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Advanced prostat cancer part 2

User
Posted 25 May 2014 at 18:27

[Note from moderator: This conversation is a continuation of an archived thread. To read the posts that came before this message, go to http://community.prostatecanceruk.org/posts/t9496-Advanced-prostate-cancer]

 

OK as I can't find my original post and it was under diagnosis also this heading is not really relevant anymore. I have decided to join you on the dark side.

So our new address is

999, The Dark Side,

Advanced Prostate Cancer Boulevard,

TAJ BFN

Love to all X

At least I will know where to find myselfhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

http://community.prostatecanceruk.org/posts/t9496-Advanced-prostate-cancer

Edited by moderator 08 Jul 2014 at 11:40  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Dec 2017 at 22:01
I have thought long and hard on how to bring this thread to a close it has been such a part of my life for so long and you all have been my crutch and support system for so long .

I will still pop in every now and then to check up on everyone .

I couldn’t think of the best way to end this thread and then suddenly today it came to me , of course it’s XMas eve and what better way to honour Trevor and my boys .

So here goes .

There stockings are hung by the chimney with care

But all they wanted was for there Dad to be there

I’ve made there hot chocolate

With marshmallows and care

But all they wanted was for there dad to be there

The table is set with love and with care

But it’s not the same because there Dads not there

Xx

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jun 2017 at 20:21
Just a really quick update Trevor is now on the oncology ward and the difference in the level of care is like night and Day.

His bloods show that he is responding to the Antibiotics and his Liver scan showed nothing untoward , his kidney function is responding to the IV fluids.

My Man is fighting back he still isn't eating but I did manage to get him to have a mini triffle .

He is still confused and hallucinating when I arrived he thought we were in Beirut apparently there has been gunfire and explosions all night and he was worried that we wouldn't get a flight out . I have worked in care homes for years and have experience with Alzheimer's patients and one thing I learnt was go with it and don't try and bring them back to reality but join them in there world. So I told him that I had booked us a first class seat on the first plane out of there .

He was really happy with that but then the pirates and the long boat arrived and he wanted me to cut someone's throat I told him I only had a hospital plastic fork but I would stab them in the eye 😱

So we are very much still in Shark Territory but we have a huge sprinkle of HOPE and I feel so much more confident with his level of care . He is Shamazing and I don't know how or why he has so much fight in him but he does and as long as he does I will stand shoulder to shoulder with him wether we are battling bombs and gunfire in Beirut or Pirates in a long boat. He is fighting and I am right by his side.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Jun 2016 at 21:49
You no Guys it's ok Chris in particular to not no what to say , I wouldn't no what to say to me either but I do have a sneaky feeling that we have a similar sense of humour.😆

Debbie thank you for posting it is still such early days for you and I can remember those oh so raw feelings and complete panic moments.

Steve no worries about mentioning your wife it is ok my friend.

Where do I get the strength from ? Time , Time is the only way after 3 years on this journey you somehow manage to get everything into perspective it hasn't always been like that in the beginning I was a quivering nervous wreck afraid of everything . It is impossible to live your life like that and yes I sometimes think that it is easier to accept from the beginning that as in our case to hear the words Terminal you don't expect much and every day is a bonus and wow we have had over (just got to nip of and add that up)1095 days . That's an awfull lot of days to waste, I have said this before Cancer isn't a death sentence it is a LIVE sentence and yes my humour has helped me and I hope lots of other people, it isn't a coping mechanism it realy is me , not quite sure where I get it from . I think I was born with it , for me laughter is the essence of life it doesn't matter how serious the subject there is always a funny side and almost always it makes everyone feel better. The three Ls are my mantra Live ,Love and Laugh.

So what better way to end this post LIVE, LOVE and don't forget to LAUGH.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Jul 2016 at 10:45

Yet another twist and turn in this roller coaster ride! Everyone's ride is different - some have long stretches on the level where you can sit back and 'enjoy' the ride, some only get relatively short and turbulent rides. Then there are the slow upward sections - if you can just relax you can enjoy the scenery. But of course you know that once you reach the top of this section there will be a drop; it might be a little drop and then another level section or it might be a big drop. You just don't know for sure what is round the next corner. All we do know is that we are strapped in, the bar is down holding us into our seats and we can't get off. However much you scream or cry they never stop the ride until it's over - so we try to laugh - often hysterically but what else can we do. And in the long run we don't want the ride to end because we know that the last section is that great plummeting drop before it is actually all over. So we hang on in there, willing the ride to go on for longer, just glad to have our friends around us cheering us on.

So to Julie, Devonmaid, Glen T, Piglet and all the others on particularly turbulent parts of the ride - hang on in there, laugh and enjoy when you can and know that all your friends are behind you.

BTW I was a frenetic Googler excusing myself as I thought being a nurse would make me able to critically analyse the papers I read! What a load of tosh - I could never really understand research methodology and the terminology used. This site is real - real people discussing their journeys, feelings and all the 'little' important things that seem to get overlooked. No better source of support!

Edited by member 30 Jul 2016 at 10:52  | Reason: Not specified

User
Posted 07 Jul 2017 at 11:44
Latest update and the wheels are in motion for Trevor to come home 🤗.

He is continuing to gain strength albeit very slowly yesterday was the first day without drips they still haven't added Abbi back yet but are planning to in the next week .

It has been a very scary 3 weeks most of which Trevor isn't aware of he has hardly any memory of the first two weeks . He does have one memory that he does remember and that is trying to fly a drone over our house because he couldn't find his way in.

That memory to me says how determined he was to come home even if he had to fly a drone to do it.

Scan result on his tummy and bowel Lyn were negative for spread ,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 May 2016 at 21:36
Firstly thanks Dave K for the life expectancy calculator it is I am sure very informative , I have to admit I have googled many times PSA of 13000 life expectancy and according to the results Trevor has been dead for at least 2 years, so every morning is a bit of a shock😵 Talk about Groundhog Day.

Honestly and seriously this isn't a disease that I think anyone can predict outcomes on. It is so varied from one man to another. I remember my first desperate posts with Trevor's original PSA reading , of course I thought it was pretty high but I had no idea quite how high it was and everyone was going very gently around what I was asking, I could feel everyone thinking Julie check his pulse.😳

Not only is he very much alive and kicking he is looking and feeling good .

OK so scores on the doors are not so good but they are all just numbers ,

So Wiz visit today and

PSA up from 1,081 to 1,336

ALP up from 177 to 218

We are staying on the Abbi tabs for another 4 weeks , new bone and MRI scans scheduled with a review in another 4 weeks. Our moto is and has always been tomorrow is another day, over the last 3 years one thing we have learnt is that Cancer is not a death sentence it is a LIVE sentence.

So in the words of the two Ronnies it is goodnight from him and a goodnight from me.

Love you all.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Jun 2016 at 23:22
Guys I haven't done individual thanks but a huge and massive thanks to you all , your replies are so Heart warming and make me feel very humble I also know that many read my ramblings but don't comment. So for those that do comment I just love ya, for those that don't comment it's ok you can just do a smiley , lots of people don't know what to say and I get that I understand.

So this is a mid way catch up , I have been trying not to do mid way catch ups because they can get a bit well boring I suppose🤗 Sorry just laughing at my self how the Feck can our lives be boring.

So Trevor and the boys decide to go to there annual meeting at Santa Pod , I have never been so this is a women's interpretation of what is my worst nightmare , loud cars , drag racing, and not a burger van insight, so I decide that I would stay home and do my nails.😍

Next thing is I get a phone call to say T has slipped down a grassy slope with I say with his fold up chair still over his shoulder , he has skidded to a halt and then been helped up by his 6ft 3 inch nephew , GLen he is just the sweetest lad but at 6ft 3 and as black as your hat not quite what you would call a paramedic. Trevor was a bit dishelved but otherwise ok. So my nails are chewed but not painted .

MRI and Bone scan completed results on the 13 June

.

B FN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Dec 2016 at 22:19
This man of mine is going to see me of long before he goes, so last week he couldn't stand unaided with the pain. This week with the morphine he is popping in and out of the conservatory door like a Jack in the box.

Ok so he won't be running a marathon any time soon but the turn around is remarkable , I am having to run to keep up with him.

He has been outside organising a bonfire tonight , not starting just organising .

I Am lost for words and oh so grateful that we have another Xmas together.

I am really not sure how or why he manages to rally and as I said earlier if I could sprinkle some T dust I most certainly would , so for any newbies initial diagnosis of PSA 13000 , spread to all of his torso, and three plus years down the line , here we are hanging by a thread but hanging we sure are hanging

BFN

Julie x

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Feb 2017 at 20:48
Flipped and rolled Guys thank you all for your support over the last four years you really don't know how important you have all been seriously you are all mega to my well being 😘

You are all my safe haven , my outlet to the roller coaster ride that this disease wants to spin me on and it spins me quite often .

Just want to say a Huge Thank You to every one of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Mar 2017 at 22:02

And an update ....

"Trevor is home and looking good so drama over although I have no doubt there is a blockage somewhere but the scan will reveal all on Thur.

It's been a very long day xx"

Edited by member 13 Mar 2017 at 22:58  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Sep 2017 at 19:43
Beginnings and Endings

In the beginning I thought it was the end

Turned out the end was just the beginning

Can't help wondering is this the beginning of the end

How will we know if this is the end

Or is this a new beginning

There has been so many ends

But for every end there is always a beginning

And for every beginning there is always an end

Mountain high Valley low

We have climbed every mountain

And then sunk so low

Then back up the mountain

As high as we can go

How will we ever know

Is this a beginning or is this the end

Is this the beginning of the end

Or just maybe this is end of our beginning

Beginnings and endings

Loads of love to everyone of. You Guys

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Nov 2017 at 14:23

Dear Julie,

I am absolutely gutted to hear of Trevor's passing.

Never in my 12+ years on the PCUK forums have I witnessed such a very long and so difficult a battle by such a courageous man.
He was a hero, and we all wished he'd continue to defy the overwhelming odds for even longer.

We salute a truly outstanding man who inspired us all.

Julie, our hearts go out to you and your boys today.

You shared with us every up and down over the years and yet never lost your unique feisty spirit and so often you were still able to type so many 'laugh out loud' postings.

Only you could have written these moving lines about the love of your life:
You summed up everything in so few words.


Trevor
The Man
The Myth
The Legend
Has left the building.


We all love you, and wish you all the strength in the world to get through this sad sad time.


REST IN PEACE NOW TREVOR

 


George & Lynn

User
Posted 07 Nov 2017 at 12:49
Trevor has left the building....

Julie you are one Orrsome lady.

I wrote this poem about 6 weeks ago for a friend struggling after the loss of his wife. I know you won't find it inappropriate for you or your family.

I am deeply sorry for your loss.

xoxxx Mo

Ours is not to reason why

it matters not how hard we try

we can hide under that darkened sky

or spread our wings and learn to fly

Our grief isn't measured by our tears

nor time constrained by months or years

the smallest things can make us cry

yet ours is not to reason why?

each day we start with good intent

to try and simply re -invent

but that is living in a lie

For ours is not to reason why.

So we change the question to simply how?

and take one step forward in our here and now.

User
Posted 19 Dec 2016 at 20:24
Not sure what has gone on but hey I have been busy,

So sprinkles and patches

Patches is for the life boat we have secured a huge patch from the morphine so ok still in shark territory but he is know up , walking , talking , I can't tell you all how much he talks. Ok not running a marothon any time soon but able to stand unaided and mobile .

The morphine has been incredible he isn't sleepy or drowsy and his appetite has improved beyond belief, so Xmas is back on. 😄

Still waiting for the scan results but I think everything will be ok, as for McMillan nurses I am sorry but I am severely disappointed and if they ever actually get in touch I will be telling them exactly what I I think.

The sprinkles are for all of your good wishes , a little sprinkle of fairy dust for each and everyone of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jun 2017 at 15:52
Julie

my SS

I haven't been on the forum in ages almost everyone I knew on here has either gone or I keep in touch on a more personal level. Like Devonmaid I got a little person on my shoulderr telling me I should look in. Well that's if it is fair to call Si superman a little person!

When we last chatted I told you that I had become tired of being the person that people only seemed to associate with the partners about to lose their loved ones, as if my loss somehow made me a tower of strength or gave me a divine power to make things seem better. It really never did and does not now.

I am so sad to read your latest posts and that Trevor is quite probably facing his final battle wih this s*** disease. The war against PCa is not over for you Julie and it never will be as long as you have a breath in your body. You will fight for Trevor to have the dignified death every person should be given and you will silently pray for a miracle of some sort to happen. All those blue light incidents wih the amazing reoveries from ambulance rides to ride on mower resurgences ...please, you will ask, let there be more of those?

Trevor's battle is also yours and after 4 years of rollercoaster riding you are exhausted.So please let others help and when that proverbial fat lady starts wobbling on her vocals, you yell at her to sing as loud and strong as she can. Trevor deserves the biggest finale possible after the brave fight he has fought.

I can offer you very little comfort or wise words. Moving him now may not be an option so fighting for the best care and just surrounding him with the love and knowledge that you are there with him and for him as always is the most you can do.

I do hope his family can come and give you some support and help and take the time to help with the boys too.

I will be thinking of you,and wishing that when the end does come it calls him gently as it did for Mick just 3 years ago ... swing low sweet chariot

xxxx

Mo

Edited by member 20 Jun 2017 at 15:55  | Reason: Not specified

User
Posted 23 Nov 2017 at 10:06

For those wondering, today will be Trevor's funeral. It must seem like a long time to have to wait, especially for the boys and I think Julie will know that we are all holding her in our hearts.

Rest easy Turmeric T xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 May 2014 at 23:25

OK so here we are on the dark side, boxes are unpacked , ornaments are neatly arranged, kitchen is up and usable.  I have to say moving to the dark side was a scary thing to do but it is not quite as dark as I thought it would be.  There are friends here and Si has his fish tank so it's not as scary as I thought.

Given a choice I would rather be under the pca undetectable with no lymph or bone mets, but hey ho I wasn't,t given that choice.

Our new grandson has visited today, 4 weeks old (he didn't drive himself) proud Mum and Dad bought him in his brand new car seat, I have cuddled and sniffed all afternoon, the newness of new life. I am an atheist , sorry for those that I might offend but I don't believe in God or a afterlife, what I do believe is our memories live on in future generations, the future is our new beginning. The passing on of our genes and memories,  We live on in our children, grand children etc. . We will live forever.

Watching Trevor today cuddling little Louis , priceless. A wonderful moment

This is just my thoughts and beliefs , we all have our own belief and what ever is right for you I respect.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Oct 2016 at 20:56
My how time flies when you are having fun , I have been so busy with puppies first two litters have all gone to there new homes we have had some lovely new owners and when they climb into there cars with there new additions to the family wrapped in there blankets it makes me so happy to no that I have given people so much happiness , all of the hard work and poop , poop , poop and yet more poop is so worth it when I see there smiling happy faces . They always ask if I am sad when the puppies leave 🤗🤗🤗🤗🤗🤗🤗🤗🤗 honesty is my middle name so I always say Of Course I am I will miss them terribly 😂 . They have no idea how much hard work it is .

Trevor and the boys have had a weekend away , Ts eldest daughter organised a rented stay in a 9 bed Manor House with all of Trevor's children and there offspring it's not easy to get everyone together in one house. I had to stay and look after the gang but I did get a Sunday roast delivered .

So where are we on the PCa front , scans were done 2 weeks ago and Wiz visit was yesterday have to say I was fully expecting worsening of Mets and a move to Raduim 223 imminent . Trevor's movement has defiantly declined in the last month and even though he has protested that his back pain is just Well Back Pain i didn't believe him .

So it turns out he was right and my new name is Negative Norma , scans revealed improvement in mets i kid you not ( totally gobsmacked) HB back up to 9.7 . PSA up,so not all plain sailing but hey , not sure how , not sure why after a year on Abbi and continuous rises in PSA to get this result is Shamazing .

So just for the record

PSA up to 2340

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Oct 2016 at 09:15

I don't know Trevor well but I share his struggle with a disease that we can resist but ultimately cannot defeat. I think there are many ways that individuals can go in dealing with this inevitable if reluctant decline. I think Trevor and I know as will others on here, take the view that a single focus on the disease itself can be self defeating. Do what you can whether it be taking turmeric, or aspirin or conventional hormone therapy etc etc but then try to normalise your life as much as you can. By doing this I think you help those around you to make sense of this senseless challenge.

I know others will worry for me and I appreciate their dedication, as I am sure Trevor does for your wonderful support, Julie. I will in the meantime try to get on with my life, I never forget what the ultimate outcome is but there is plenty to do in the meantime. I have spent nearly five years doing that and am still here, likewise Trevor rolls forward, long may this challenge be met with life affirming actions.

User
Posted 14 Mar 2017 at 23:42
OH My Si Superman you will neve know how much your post means to me a friend and a Golden Oldie any time you want to visit my draw bridge is open. 😍

Yes yes yes what is happening with our posts WHY are they going through moderation before appearing I feel like I am in some sort of time lapse OH I get it , it's just in case I say TITS 😆

BFN

Julie X

Ps I can see you chuckling Si. Much love to Ness and the girls xxxx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Oct 2017 at 23:11

All my thoughts are with you Julie - I hope as you do that Trevor can simply be at peace and that you are able to be with him when he finally stops fighting. A friend sent me this poem after Tony died. It's by Raymond Carver who had cancer and was written shortly before his death as a tribute to his wife. When I was full of useless guilt about what I had and hadn't done she reminded me that I had been the best there could possibly be for him, and that he absolutely knew that he was loved. That's all that matters in the end and if ever a man was loved and cared for and fought for and supported and comforted, it's Trevor. You have been and are extraordinary - for him and for us all. Love and hugs to all of you, Ruth xxx

Late Fragment

And did you get what
you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself
beloved on the earth.

User
Posted 31 Oct 2017 at 06:29
I hope no one finds this inappropriate, 3 years ago when I was diagnosed Trevor's story was one of the first I latched onto. Trevor gave me hope and I used to (I still do) hope I am a tenth as strong as Trevor as my cancer develops.

Julie has been such an angel and fought so hard for Trevor, and like a few others on the forum been here for everyone when they need it.

I watched my mum die of alchzeimers and towards the end she was I imagine like Trevor is now in part, my family made the choice to make what was left as pain free and short for my mum as the doctors could allow.

Reading about Trevor brings tears to my eyes, when I am unable to post and should my wife ever join the forum please tell her fast and pain free is the way for me when I am where Trevor is. I am sure that I speak for others on this forum that we will support you Julie if any difficult decision has to be made.

I wish Trevor and you peace now and spiritually peace in eternity.

Thinking of you constantly

Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 28 Nov 2017 at 00:40
Well today is my Birthday 59 years young and feeling more like 109 at the moment this is the first birthday without Trevor in over twenty years and one of our first withought him of the tick list.

Next is James 18th birthday and then XMas so our train is still speeding along , “ life or the lack of it is a very strange thing “

None of us know what we have in store .

A very dear friend in fact my best friend has also just lost her partner they also have a 14 year old son , our lives have always been in in sync. Her partner Carl a bit of a lad although not a lad 60 years old and should have been more sensible left the pub at 12 am on the 18th Nov decided to ride home on his bike and for some reason stopped by the Sea Wall ( probably for a tiddle ) the police suspect he slipped on the rocks at high tide . His bike and phone where found on the wall and his body was found by the breakwater at 3.30 am .

He lived his life on the wild side and departed the same way.

It has made me reflect on so many things , yes Trevor defied the odds time and time again but can I say hand on heart that the last 4 plus years have been good years honestly I have to say no it’s been a long hard road that has been full of stress , worry , and sadnesses.

When you know from the beginning there is no hope then it is just a sad journey until you reach the finale destination..

If I had to choose between a quick slip on the rocks like Carl or a prolonged illness like Trevor I know which one I would choose.

My boys have made me so proud those boys that I was so terrified of losing there dad 4 years ago are almost men , James helped carry his dad to his finale resting place and Zack helped choose the music .

So we had Trevor entering to James Brown ( he would have loved that ) James Brown the Boss. Leaving was “ I feel Good Nina Sinome “

There was no flowers other than DAD from the boys and G DADDY from the grandchildren he would never allow them to call him grandad he always insisted on G DADDY.

Donations where given to pcuk instead of flowers.

I just want to say although this is the end of our journey and OMG what a journey it has been it is going to be hard to leave I am not really sure how or when I will be able to leave you guys behind , maybe I will just linger awhile until I feel ready , you have been such a big part of mylife for so long I am going to feel lost withought you

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 May 2014 at 18:27

[Note from moderator: This conversation is a continuation of an archived thread. To read the posts that came before this message, go to http://community.prostatecanceruk.org/posts/t9496-Advanced-prostate-cancer]

 

OK as I can't find my original post and it was under diagnosis also this heading is not really relevant anymore. I have decided to join you on the dark side.

So our new address is

999, The Dark Side,

Advanced Prostate Cancer Boulevard,

TAJ BFN

Love to all X

At least I will know where to find myselfhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

http://community.prostatecanceruk.org/posts/t9496-Advanced-prostate-cancer

Edited by moderator 08 Jul 2014 at 11:40  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Jan 2016 at 17:24
Julie my lovely SS

I am back at home now and will call you in the next day or so, we have talked about the long and winding road many times together. Every time you get to a sharp corner you slow down a tiny bit but still manage to get round it, 2 wheels off the ground, tyres screeching and oncoming traffic diving for cover!

We know that one day that corner is going to be just too big an ask, but for now you will still make it round them.

Tearful moments are expected they happened many times for me too, that is because we are normal human beings.

PSA is still in check and the Wizz is happy with that.

We are all here with you Julie

xxx

Mo

User
Posted 21 Apr 2016 at 23:51
You are so right DM this disease is so varied from man to man ,Trevor and Si's stats are so similar but poles apart in there PSA . I totally agree we should volunteer them for testing. Between them they well may hold the answers and at the very least Ness and I can have two weeks in Tennerife whilst they are away😆

Lyn the Wiz is going to keep a close eye on the Cancer drugs fund and she said even if they change it that it would take 3 months to come into force and she would let us know Asap. She is still very wary of Trevor having chemo.

So life carries on as normal well normal for us, the boys have basketball practise every Thursday so of they all went with Trevor driving leaving me at home with the hounds, all was going well until Tulip (Bull Terrier ) spotted Dave ( the cat ) in the field and decided she was going to leap the fence to get to him. I have a sneaky suspicion that she was planning a spot of ABH, although Dave isn't a celebrity I did feel his days could be numbered.😵.

So my first thought was get all of the other dogs in before I opened the gate , then I ran to catch her this wasn't easy as you can imagine a very unfit nearly 60 year old chasing a Bull Terrier. 😤I was onto a loser before we started. Luckily she had jumped onto the patio and that is fenced I thought yes I am in with a chance and Dave will live to fight another day.

Of course once I had caught her my next dilemma was how was I going to be able to walk her without a lead passed Dave who was still sitting there like a sitting duck . (Cats can be so stupid sometimes). So daft idea number one was take the belt of my skirt and use it as a lead. I managed to get it of my skirt one handed because I am hanging onto her collar the whole time. I even managed to get it over her head, I then realised what a ridiculous idea this was it was way to flimsy to hold a Bull Terrier. Know my skirt is round my ankles and I have to hold my skirt up with one hand while holding Tulip with the other.

This is when smart idea number two comes into play. I thought if I can man handle her to the conservatory door I can force her in that way and we don't have to go past Dave who is still sitting there but now with a very smug look on his face.😹. Of course that would have been way to easy, because MRs ocd has locked the conservatory door from the inside.

So it was at this point that I spot the window slightly ajar, I will admit I did hesitate mainly because it is my brand new conservatory and dogs are not allowed in there but being an animal lover the life of my cat won over the no dogs in the conservatory rule. So hence I know this has been a long story but this is how I came to be chucking a Bull Terrier through an open window while my skirt was round my ankles.😵. Just in case some one spotted me and it goes viral no animals were harmed in this escapade.

Who says my life is dull..

BFN

Julie X

Edited by member 22 Apr 2016 at 00:06  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Jun 2016 at 00:57
Although I am not suspicious the last few days leading up to our Wiz visit and the thought that I would be posting on page 13 and our appointment on the 13th has given me the Eebiee Jeebiees ( for those living in the North of England that is scared witless ( no I said Witless 😀 , ok I was tempted I cannot lie to say the Word bugger it I am going to say it ( Lyn get your tea away from your laptop ) shitless , oh dear that's me moderated.

So scores on the doors PSA up from 1336 to 1552

Alp slightly up from 218 to 220

Bone scan revealed new hot spots on ribs and down the right leg so ok not the best of news but certainly not the worst and with all those 13s flying around I think we got of pretty lightly.

I know that for some of you that would be devastating news but we knew the bone scan would be worse and in the words of the Wiz she is not overly concerned (how crazy is that statement ) who would have thought that 3 years ago I could even think that let alone type it.

How life changes .

So again in the words of the Wiz for now we are staying with Abbi and will squeeze every last drop from it and her words kind of echoed my thoughts . The results of the MRI were not available but she said she had a brief look and everything looked ok but she will take it to the MDT on Thursday and ring with results.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Jul 2016 at 19:50
Hi Frank,

No worries about jumping on my post pages 12 and 13 are just the tip of the iceberg the rest is a bit like War and Peace hard going in places but oh so worth the read.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jul 2016 at 09:25
Chris,

I thought we were keeping our on line bromance a secret!

J ( sorry Julie for gate crashing here ....)

User
Posted 01 Nov 2016 at 23:05
Ok Guys so here we are Christmas is just around the corner and this will be Christmas no 4 since diagnosis you all know I never thought for one minute that we would celebrate that first Christmas let alone number 4. So bring on the tinsel. 🤗

So scores on the doors PSA 00.01 😂😂😂😂😂😂 that had you all going I have just wanted to say that for 3 years.

Ok the real score 2,530 so yes up but there is always a silver lining it's not up as much as last time and I just posted to Sallyyy this is such a strange disease and I really have to pinch myself because who in there right mind would be happy with a just over a hundred rise in a month. Well I can honestly say we were .

Back to reality awhile ago I posted about 3 wheels on our wagon well I think we are down to two and a bike pump Zometa has been discontinued until further notice due to the Osteonecrosis . Trevor has been referred to just about every dept known to man and a few that haven't been invented yet. Know one really knows what to do with him (no comments). Nothing can happen until the Zometa is out of his system so it could be two months , could be six months , could be a year . So a rock and a hard place but hey Mr Turmeric is not known for giving in without a fight.

Basically they would have to remove all of his teeth and then file the bone that is growing in between and it seems to be growing quite quickly, I just want to say for anyone just about to start Zometa that this is a very rare complication and he has been on it for just over two years.

Is there any good news you are all thinking well of course there is, Drum Roll Please! Mets in his hip have reduced ( don't ask I know it's crazy) PSA rising month on month for over a year and yet a decrease in his mets in his hip that good old saying WTF springs to mind. (Please don't moderate me) 😆

Si Superman and Turmeric Trev you both just continue to defy the odds and spin pca on its head.

Also appointment to start Raduim 223 is here and due to commence (this is where the bike pump comes in) on 22/11/16 and again another drum roll Abbiraterone to continue along side the Raduim.

So 2017 here we come. 😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Nov 2016 at 21:00
Si I wouldn't change a winning formula if I where you so stay with the Fosters but switching to roll ups and adding some Turmeric might be a good compromise we could call it chasing the Dragon. 😆😆😆😆

SS I know I don't understand it myself and neither does the Wiz she is as gobsmaked as we are none of it makes sense , rising PSA in the thousands and a reduction in mets how crazy is that. The last scan 6 months ago showed a worsening in the Mets and the PSA is know over 1000 higher and yet the mets in his pelvis are reduced. How does that happen ?

The Wiz called him an Enigma let's face it if she can't work it out then there is no hope for the rest of us . She has also never seen a case of Osteocrenosis and admitted that Trevor's starting PSA and the length of time he has survived she has never witnessed before. For me it just goes to show that we can put all of the data on paper and come up with statistics and then certain people chuck those statistics straight out of the window..

It reminds me of a few years ago a friend was having trouble with her dog going into labour and she quoted the signs from a book that she had read and couldn't fathom out why she was acting differently from the book . I simply told her " your dog can't read and so she has never read the book".

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Feb 2017 at 00:56
So here we are Raduim no 3 tucked under our belt and completed today. Cardiology tomorrow and day stay for teeth on the 16th it's all go here. That has just reminded me of when our calendar was crammed with fun excursions / party invites/ meals out/ etc etc and now it's like a list from a scene from Casualty.

Talking about excursions if anyone can bring up my post about the train journey and put the link here I will be ever so grateful 😉I am not naming the two guys I am thinking about but S and C if you are reading 🤗😍

It's all about journeys isn't it that's why the train journey came into my mind , we are nearly 4 years into our journey ( a bloody miracle) I can't put into words how gobsmacked I am by that , it is just mind blowing after all that he has been through the highs the lows and there has been so many lows again probably more blue lights than Casualty.

Here we are almost 4 years into our journey and 4 weeks ago he could barely stand and today he has done the school run and then stopped at Tesco where he bought me a early Valentine gift / no wait for it , it was a giant bag of Walkers Cheese and Onion Crisps and this is the best bit a box of Mr Kipling special pink edition Fondant Fancies . 😍 What more could a woman ask for in life !

He knows how to tug at my heart strings .😄😄😄😄

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Feb 2017 at 21:52
Ok so he is home and in bed resting he has had soups / warm hot chocolate and oodles of TLC oh and rice pudding with custard.

So they removed 3 teeth ( this is going to be a very long and ongoing process) it was difficult to remove the teeth because of the bone growing around them the bone was gripping the teeth and apparently the new bone growth splinters if not done carefully. The bone growth had grown considerably since his last visit . Look away now if you are squeamish they then had to file the bone down . I can't imagine it !

He then had a huge blood loss because of his blood thinners for his heart, trousers and coat covered .

Next appointment to do it all again is in two weeks . Depending on how well the healing goes.

He has had a lump in his jaw for a while probably the size of a large marble that we and his dentist put down to the abscess but today they / they being head neck and throat department ( I am sure they have an Ology but I haven't got to grips with it yet) want an MRI done .

So after all of the drama I would like to add a little song.

My Guy.

I won't do all of the versus because hey I've got soups to make / children to sort / dogs to get to bed/ and a new venture on its way.🤗

So My Guy ( feel free to sing along )

Nothing you could say could tear me away from My Guy

Nothing you could do'cause I'm stuck likeglue to my Guy

I'm sticking to my man like a stamp to a letter

Like birds of a feather we stick together

I'm telling you from the start I can't be torn apart from My Guy.

As a matter of opinion I think he's tops

My opinion is he's cream of the crop

He's my Guy

BFN

Julie X

Edited by member 16 Feb 2017 at 22:03  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Apr 2017 at 18:16
Before I do our update we just had news from one of Trevor's cousins he has just been diagnosed with pca he is 55 years young , PSA was 4.6 and his Gleason is 7 his bone and ct are clear and he has been offered RP at Guys hospital . I have told him about the forum and I hope he decides to join us .

So oncology was last Mon .

Scores on the doors ALP down from 244-201 so good news there

Raduim number 5 has been completed with number 6 due beginning of May

Trevor did ask the Wiz if maybe a second round of Raduim treatment would be offered as he has done so well on it but sadly the computer says NO.

Not enough funding .

PSA with no surprises is up from 3473-4087 ouch.

That's the boring bit done and now to the important bit how is he feeling and the answer to that is pretty darn good. He has been gardening , putting up blinds and yes he is feeling and looking good. So I think the Raduim has been a success.

Still undergoing tests for the heart issues with appointment at the end of the month.

The teeth issue is also still ongoing and he has had more bone growing through where he had his extractions but at least he is managing to eat almost normally.

4 years in May to our Cancerversary and I know I say this every year but a huge thank you to everyone here for carrying me through my wobbly moments and boy there's been a few😛 You guys have been there through the good, the bad and the down right ugly moments of the last 4 years . A Huge THANKYOU. X

I am trying not to concentrate on the fact we have only one more Raduim treatment to go and to listen to my own advise of live in the moment and this moment is a good moment. 🤗

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 May 2017 at 23:39
So here we are our 4 year Cancerversary on 1st May (bloody hell) would you believe it . I am totally gobsmacked talk about life is a roller coaster . We have had more lows than highs over this 4 years but we are still here ! Still fighting ! .

Ok I will be honest and probably nearing our destination but heck I thought that 4 years ago and yes we have pretty much used all of out tools in the tool box . Trevor had his last infusion of Raduim 223 on the 2nd May.

So just for the record scores on the doors at last oncology visit .

6/417 - PSA 4087

ALP - 201

The mouth issues due to the osteocrenosis are still ongoing and bone is still growing where the extractions where so healing on the gums has been a major issue , Aunty Bs have been ongoing almost every 3 weeks the bone makes wholes in the gum and causes gaps which causes infections the term Hamster and wheel comes to mind.

The heart issues have seemed to settle so phew for that we are still waiting for the test results 😤

So any way that's the bad news out of the way and who knows the cure for advanced pca might be just around the corner ( never give up hope my friends never give up hope )

I have told this story before but I think it is so important.

HOPE that is what they said to us in the beginning , never give up HOPE !

I am a glass half empty so you can imagine my face when they said 4 years ago ! Sorry it's terminal ! Sorry you can't go on trials ! Sorry you can't have chemo ! But never give up hope ! Seriously I thought ! Is she having a laugh ! I thought oh yea that's the standard comment . Hope it's free on the NHS because there isn't anything else we can offer .

I know most of you guys will understand that feeling of hopelessness as we walked away that day with our prescription of HOPE .

For all newbies that are given a prescription of HOPE ! All I can say is cherish it , roll with it , you never know how far hope can take you. Here we are 4 years on and today he hasn't felt too good but tomorrow who knows , tomorrow just might be the day a cure is found .

BFN

Julie X

Edited by member 06 May 2017 at 23:59  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
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Posted 07 May 2017 at 10:06

You managed because you had to but look what you gained.

4 extra years with the love of your life. Yes there have been up, downs and lows and I'm sure there have been times when you wouldn't have wanted to put any of you through what happened in those four years, especially your lovely boys who have had to learn very early on that life is fleeting.

What else have they gained though in that time? They've gained the knowledge that you never give in. They've gained the knowledge that love can surround you and even if it can't make you whole again, it can offer the comfort blanket that will swaddle you and make you feel better even if only for a limited time.

They have seen their dad conquer his physical limitations and they have seen their mum supporting him every step of the way.

In spite of, because of, what your boys have grown up with this last four years, they will be men you can be proud of.

You and their dad have moulded them into worthwhile human beings. Not only should you be proud of Trevor and yourself for fighting this disease but also that despite everything else you will have both left a legacy of hope and determination.

Love to you all

*****

We can't control the winds - but we can adjust our sails
User
Posted 30 Jun 2017 at 22:50
Hi Guys,

So sorry for the delay but by the time I get back from the hospital it's full steam ahead feeding dogs and children I just collapse with exhaustion .

So he is still critical but stable and looks much better than a few days ago dare i say I have a very small sprinkle of hope , he is much less confused and is able to sit in a chair he is still not able to stand unaided but is eating and feeding himself.

He was apparently fighting 2 infections a lung infection and also the one from the necrosis of the jaw so no wonder the Sepsis.

The confusion is improving but as reality is hitting he has been a bit tearful he hasn't really been aware of anything that has happened in the last week to ten days.

He did relay to me today how he was confused about how to get home and how everything looked different so he had to fly a drone and get an Ariel view of our property so he could just get home and be safe.

He has had 2 blood transfusions and a whole gamut of drugs that are ongoing , his bloods are still all very unstable and electrolytes are all over the place. The catheter is still in place and numerous drips are ongoing.

Ct and bone scan were done yesterday , stomach and bowel are clear of cancer and his liver and lungs all ok but much more progression in the bones so it looks like the Raduim wasn't successful .

I am totally in awe that he is still here and still fighting and when he refused the walking frame and said if I have to drag myself on my belly then that's what I have to do I am not having a frame that's when I knew he has got a chance to come out of this.

He is just such a fighter , no wonder all,of his hallucinating was about fighting wether it was about pirates or Beirut he was fighting for his life.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 02 Jul 2017 at 23:50
Just wanted to add I have had some amazing support from people that I never expected it from you guys on here on here have astounded me and humbled me, you all know who you are.

Also even though these people don't come on the forum they have no need to but just for the record Mrs B who took over the care of my puppies for the last Two weeks a mahoosive thank you.

And Mrs D what a star she has driven like a bat out of hell to take on my two pregnant dogs and taken them down to Essex and will keep them there until I can bring them back .

Sometimes help comes from unexpected places .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 Oct 2017 at 19:06
A very quick update,

Got a call this morning from the hospital ( after yesterday when he seemed much improved although very confused). To come ASAP he had been sick in the night and aspirated.

He has a lung infection and is now on IV Aunty Bs and it seems we are pretty much back to the situation we where in a few weeks ago . Albeit he is now much weaker ,

I have to be honest and the situation looks pretty grim he has been placed back on the Amber Pathway ( ie no improvement in the next 24/48hrs and they will withdraw treatment).

The Wiz has visited and as you know she is a no nonesence Gal and said even if he pulls through this episode and that’s a big IF then we are looking at maximum 8 weeks .

She said today that she would have stopped Abbi at the next visit ( I had already guessed this ) . Chemo has always been to risky and he is know way to weak to cope .

At the moment he is to weak to be transferred to a hospice so I will leave that for another day.

They are going to deactivate his defibrillator because if he goes into cardiac arrest it will fire automatically and cause him more distress.

At the moment there is only one phrase that springs to mind and that is

It’s Goodnight from Him and it’s Goodnight from Me.

BFN

Julie X

Edited by member 27 Oct 2017 at 19:17  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
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Posted 29 Oct 2017 at 19:57
He is still hanging in there, mostly sleeping he does try and speak if I speak to him but it’s so garbled it’s hard to understand what he is saying . He has lots of secretions in his throat , they have given him something to help stop it building but can’t suction what is already there.

He is not in pain as such but when they try and move him he calls for his Mum.

Tomorrow is D day depending on blood results whether they will continue with the Aunti Bs or call it a day and I have to be honest I wish they had not even started them for me there doesn’t seem much point to try and get him over this for what would be a few more weeks.

Zack our youngest is terrified he is a lot like Trevor and is refusing to accept he has said that I am overly dramatic and people are cured of pca all the time so why am I being so negative.

James is accepting of the situation but doesn’t want to talk about it .

All I can do is be there for them when they need me , I can’t force them to talk and I can’t force them to accept. Everyone handles things in there own time and in there own way.

It has been a long and at times very hard 4 plus years but we are now nearing the end of our Rocky Road .

I would just like to thank each and everyone of you for being my support network in the last 4 years , you guys have no idea how much you have helped me in every way possible .

You have been my crutch in my many hours of need .

Thank You

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Nov 2017 at 23:10
Julie my love

Only leave here when it’s the right time, you will know when that is. You’ve been a hugely important member here, bringing laughter through the terrible sadness and joy through the nightmare we’ve been living through. As you know John and I continue to live through our journey, it’s not much fun and I know exactly what you mean when you say you wouldn’t choose it, me neither. I couldn’t love my man more, but oh, how this illness has changed my life it’s not something I relish.

Iknow your lovely boys will be OK, they have a lioness of a mum to show them the way. They will make their way in life and make you proud, or even more proud than they do now. As you stare into the future you must wonder what it might bring, me too. Let’s hope it’s all good.

Think of you often Julie, Hugs

Love and best wishes

Devonmaid xxx

Edited by member 30 Nov 2017 at 08:42  | Reason: Not specified

User
Posted 08 Nov 2014 at 11:45

Ah my lovely friend, I'm not clever at all. But I have to train a lot of Head Teachers and learned many years ago that if you want them to understand something they don't want to hear, you have to use words of less than two syllables! I also use a LOT of puppets!

If you look back at previous members' stories, some have had a really good AAWR so perhaps use those stories to boost T's confidence. This time last year we were all worried about your boys and Christmas ..... I think this will be a good Christmas for you all.

I am worried about you though, particularly your eyesight or the resolution on your screen. The hat is pink :-0

Love Lyn x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Nov 2014 at 19:22

Oh dear, note to self do not go out to a party and wake up with a hang over and try and make sense of this threat, but here we go 

Sorry to hear that Trevor is now allergic to Apples i  do not agree with Lyn that Trevor should now substitute them for crisps if it was me i would try bananas.

Lyn looks nothing like Chris De Burgh, not really sure where you get that from. but she should use spell checker what is AAWR it makes no sense to me at all.

Mo why are you on about wobbly you said you was going to the gym if that is the case then there should be no wobbly http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Julie only offering Trevor Half a sandwich when he has been out all day is bad http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif i will be ring child line.

I thought Trevor was having results, what was they!!! typical women yacking on about onions, apples, crisps just don't get it

Si xx       

Don't deny the diagnosis; try to defy the verdict
User
Posted 29 Nov 2014 at 22:53

Got to thinking about this Cancer and the journey that we are all on. This is just a little poem about the road we are all travelling. Hope you enjoy it.

The station is so busy far to hectic for me, I can't remember what train they said , I'm not sure where we should be. I look at him for reassurance but he looks more confused than me, sit down and take the weight of I'll fetch us a cup of tea.

I spy the ticket office but there's crowds of people there should I push my way through or just politely que.

The family in front of me have buckets and spades day trippers I thought, they brought a return ticket to RP they say it's nice there this time of year. I think they used there rail card and this reminded me I had accidently dropped mine when I went to get the tea.

Finally it's me, 2 tickets to Cancer central please, "sorry love this window is return tickets only you need window 3. I looked around for window 3, this station this station is so busy it's beginning to worry me.

I saw a guard he might help. " Excuse me do you know where I can find window 3 , you don't want window 3 love that's the non stopper it terminates at the end of the line. OH I thought bu@@er me, so where should we be. Try window 2 he said that's the scenic route it stops at all the stations.

Come on I said to him lets try window 2 there's a buffet car included and you get a free cup of tea.

Are you sure this is our train he say's , are you sure you heard him right. The speaker booms out the train leaving at platform 2 is for Cancer Central and is calling at all stations so of we set into the night. Yes I thought I heard him alright.

The lady with the buffet car came rattling down the aisle anyone with a HT season ticket gets a free curry, that made him smile.

We dozed awhile grateful for a nap, The train started slowing as we approached Chemo many fellow travellers stood up we gave each other a knowing nod as the speaker said Mind the Gap.

The train is speeding along know, clickety clack , clickety clack , should we stop at Abiraterone or go further up the track.

We chatted to the man opposite he was going to Enzalutamide, he said it's brilliant there's a water park with a slip and go slide.

This journey has been exhausting and I think we both agree, if we have to come this away again it'll be the Bus for him and me.

BFN

Julie X

 

 

 

NEVER LAUGH AT A LIVE DRAGON
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Posted 28 Dec 2014 at 22:49

So sorry to hear this Julie. Bit of a cliche but Trevor is in the right place now....hopefully the medics will get whatever it is sorted asap

Thinking of you all

Bri x

User
Posted 08 May 2015 at 00:51

CANCERVERSARY WHOOOOOOOOOOOOOOOOOOOW 2 YEARS ON. Stick that diagnosis right up your backside. Stuff you Cancer. I said it last year and I will say it again who would have thought it, certainly not me and certainly not our Oncologist. Sometimes some people will defy the odds. OK so I will bore you all and repeat myself 4 heart attacks, 8 stents, 1 stroke, chronic Asthma. psa of 13000 and advanced pca , sorry forgot the phneumoniahttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.  (couldn't spell that and life is to short to go to spell checker).  There must be some kind of medal , I can hear you all thinking (she is making it up, no one could survive that) trust me he has and I am not. I am making light of it as usual and yes life has been and still is pretty tough but my goodness I hope that our story can give hope to so many people, with Trevor's 1st heart attack he arrested on the table and that could have been and so very nearly would have been the end of the story but Trevor being Trevor he hadn't finished with life . 

How does he do it , I have no idea he certainly is no fitness guru, not like some of the guys on here , yes he has always eaten a healthy diet but c'monn even eating fish and olives 5xtimes a day couldn't pull you through that lot. 2 years ago he could barely stand or walk unaided his pain level was pretty much a 9 out of 10.  Yesterday he helped me drag in a 12 kg bag of dog food. 

I don't have answers , he is as much a mystery to me his GP his Oncologist his heart Dr and every on else he has come into contact with I sometimes wonder if it is because he never stops talking maybe he just hasn't finished his story . 

What ever it is that keeps him going I would be a millionare if I could bottle it, I do make light of it  but there has been many and I mean many scary bluelight moments along the way but here we are 2 years on from the big C word.  I did do a post about TIME and how grateful I am to have this extra TIME and how important it is to cherish Time , it is the only thing that you can't buy, make the most of it . Please don't waste time it is so precious. 

Laughter is my mantra, no matter how hard life gets humour will always see me through I know some will find that hard to comprehend but for me it works. Never Laugh at a live Dragon.  Cancer is the Dragon and yes Dragon I am laughing at you. 

Tomorrow , Tomorrow is another day and yes it could all go tits up but TODAY is a good day. 

For all those Soul Divas out there I dedicate Chairman of the Board , GIVE ME JUST A LITTLE MORE TIME.

BFN

Julie X

Edited by member 08 May 2015 at 01:17  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
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Posted 30 May 2015 at 21:13

We have just had a lovely visit from Trevor's half brother (Nixi) Earl is his actual name they haven't seen each other for forty years, same Dad different Mum's . I have posted about this previously but thought I would update as after chatting we know have (info from the horses mouth so to to speak) .

Earl was visiting from Canada, he is one of 4 brothers all born in Jamaica all from same parents same upbringing he described how before school they had to tend to the animals, goats , chickens , pigs they had to clean and feed them and then after school they had to do the same again so more feeding and cleaning before bed, home work was unheard of , all having exactly the same diet and life style, life was hard out of those 4 brothers 1 remained in Jamaica and is still living there alive and well . 1 emigrated to America at the age of 15 he died at 69 of advanced PC . Earl said it was advanced when he was diagnosed and there wasn't much that could be done.  So pretty much like Trevor.

Brother number 2 emigrated to Switzerland when he was 16 and was diagnosed with locally advanced PC at 67 he decided to opt for no treatment (this reminded me of Lyns father in law we all make our own choices in life) he died at 70 of and not with PC. So out of the 4 brothers 2 are still alive but living very far apart and 2 have passed with PC but also very apart in distance. 

Then there is Trevor same Dad but a different Mum and the same diagnosis , he was born in Nottingham , just about as far as you can get from Jamaica , yes he probably would have had a similar diet (his Mum would probably have cooked similar food)  but honestly genetics for me plays the most important part in this story.  Added to this the very hopeful and recent research into genetics and Cancer I can just see things taking off and one day there will be a cure. Not in time for Trevor but for all of the others that are yet to be diagnosed. Hope and science WAY TO GO.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
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Posted 23 Jun 2015 at 13:58

Devastating emotionally but also I suspect financially? I hope the little one makes it (not Trevor, the puppy - I don't think T could be described as 'the little one'!) The puppy has you and T has the Wiz - all will be okay xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Sep 2015 at 18:12

Yes, good to hear from you, Julie, I just wish the circumstances for Trevor were better but you have been right to want some 'normal' for a while. I can picture you overwhelmed with puppies ! The pup Zanzi has been one of the few happy distractions I have had since losing Neil. She is now a big whopper, noisy, overactive, in fact a normal collie pup. Sometimes I think about getting a fourth one but that would be masochism taken to the limits ! Take care,

 

Love, Fiona and gang. xx

User
Posted 08 Sep 2015 at 21:01

Sweetheart, I thought last summer was probably going to be your last normal one and then I worried that last Christmas would be the last the boys would have with their dad. Just shows that I am a fatalist and T is made of steel. As long as the Wiz is keeping an eye on things, you have hope my lovely friend.

Loved the 'first day at high school' photos on fb x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Sep 2015 at 09:04

To google or not to google that is the question
Whether it's nobler to suffer the slings and arrows of outrageous fortune
Or by opposing end them
Ah that is the question

I am sure Bill won't mind me leaning on his soliloquy! (I wonder if it's painful to lean on one?, only if you have bone mets I guess) when we are worried and fretful we seek solutions however bizarre they may sound. It is so hard to switch off search mode and I think google is just the latest in a long line of ways of knowing. I recall lying in bed with my then wife circa 1982 when she said somewhat irritably - if you are in pain go to the doctor or look it up. So I got out of bed and got our symptoms book. I was careful to follow the guidelines and she said (impatiently ) well what is it. I replied testicular cancer. Oh let,s go to sleep, put that book away! A week later I was having a right orchitecdomy and the rest is history! But the book also said it was likely to be terminal and 33 years later I am still here. So no matter what you read or dream or create its what's happening before your eyes which determines how you operate. It's a difficult journey but we go as far as we can and there is plenty of travelling to do yet.

Rest Julie and re charge the batteries for whatever happens. Thinking of you both as always.

User
Posted 26 Sep 2015 at 20:48

I don't want any puppies - give me your children instead as I am pretty good at making sure they are safe and generally speaking Head teachers are very scared of me.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Dec 2015 at 17:47

Julie, you do such a good job of pretending life is a big bowl of chocolates and you are allowed a few tears now and then. The problem with magic is that we know it probably isn't real and although every new year that comes along is a reminder of the gifts we have had so far, it is also a marker that the coming year may be the one where the magic runs out. When the children were small I loved that they were so excited about Santa but then immediately felt sad that by the next year, they might know the truth.

Lots of love to you and all the family for a magical start to 2016 xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2016 at 20:00

Not sure what your post is signifying.malthough that sounds like big rise it's over five months and your figures are high so not doubling. Or have they stopped abby because they think it has stopped working. I understand all this as I limp towards four years and another change. Your wheels my circles, I know the concept. Trevor is lucky to have you fighting his corner, this alone will extend his time. I like being on my own (mostly) not putting a partner through all this but it can be a bit frightening. Your humour in the face of adversity I love. Keep those wheels turning and I will keep the circles in the air!

User
Posted 26 Feb 2016 at 22:58
Love you guys you are all shamZing, yep T was up the ladder and looking for a tiny weeny hole that Mr rat could squeeze in l, ah ha newly found tile that could be a rat entrance so Roland your days are numbered. We are slowly eradicating Mr Rats entry . I know you would think with numerous Cocker spaniels that they would sort out Mr rat but they are just so dopey , they seem unaware that anything is going on, l love them to death but come on you lot Wake Up . Of course then there is Tulip, she is so smart a typical terrier she is awake alert and ready to rip a small rodent in a heart beat. Only problem is she is just to darn big , she is going to rip of those kitchen cupboards , she is ( let's go Mum).

So I would like to introduce to the forum RITA, yep Rita the rat killer, a very tiny 10 week old JAck RUssel little miss lion heart . Rat poison isn't an option with the other dogs, so Rita 👹 It is all down to you.

Lyn don't Hold back I am under no illusions, we have had nearly 3 years of extra time and there has been so many moments when I have thought (this is it) and yes after seeing the scan results. Well honestly my thought is how the friggg is he still standing. Yesterday up on the roof, today he is attempting to put up plaster board and insulation in our dog room.

How does he do it ? I have no idea, turmeric ? It must be because I have no other explanation.. Of course it could just be bloody mindness and a refusal to give in. But then so many others have have the same mindset.

When I think what he has gone through , the heart attacks, the stroke, pneumonia, the cancer and there he is climbing on the roof and dare I say I don't think think you should do that, he would bite my head of, so I say I will hold the ladder . 😊

Honestly it doesn't really matter what any of you guys say , you could just give me a thumbs up or a silly smiley face but just to know that you all have my back when it all goes tits up is for me knowing that I am not alone. Nuff said.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Mar 2016 at 21:32
No Rosy only only 17 (peice of cake)🙀 to say that I don't get to sit down for more than 10 minutes at a time is a true statement. If I described my day honestly all of you would not believe it. I don't believe it and I witness it every day.

I have got a stinking cold (not surprising) I just hope that I don't pass it to Trevor. Just when I needed it most my SS flew down and made a wonderful visit , what can I say she is such a diamond , jerk chicken in tubs ready to cook and chocolate flapjack what more could you ask for in life, OH and a lovely bunch of Tulips. Life doesn't get much better than that. The chicken is pretty much gone and the flapjack (wow Mo that is fandabidosie).

So I have been able to spend a few hours under the cuddle blanket on the sofa in my ivory tower ,(prices less ) there is know a huge pile of tissues by my side . SS THANKYOU. X

Lyn YES PASSED with flying colours, sorry I waffle on and forget the important bit. 😄 UKAS Accreditaion and Breeders of EXclence for another 3 years , certificate will be in the post. Our last inspection was just as T was being diagnosed and was such a stressful time

Also forgot to say previously latest PSA 2 weeks ago was 789 so rising 100 every four weeks, but I am sure as MO would testify he looks and feels well.

Onwards and upwards guys , onwards and upwards.🤓

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 May 2016 at 23:11

I say leave him up there with some turmeric - seems to be working so far!

Three years ... 3 Christmas days, 3 lots of birthdays with the boys, at least one big family reunion, Lord knows how many puppies, rats and ride-ons, 36 months, 1098 days, 26352 hours of worrying, and being grateful, and fearful and brilliantly strong. Happy canciversary lovely xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 May 2016 at 22:20
Paul thank you, that is one for the breakfast menu. 😜It sounds so scrummy I might even try it myself.😋

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jul 2016 at 00:00
Hi Guys,

I haven't updated for ages life has been hectic with the arrival of new puppies the wonders of new life always gives me a boost. Unusual for me but I will make this short and to the point.

PSA up from 1552 to 1712

Alp - 219

So steady progression on the PSA (no surprises there) it was as we had expected the positive was not quite as big a rise as last time, alp about the same . No change in treatment staying on Abbi for the next 4 weeks at least.

I do think that Trevor seems a bit slower in his movement but it is very easy to put that down to the cancer when it could just be the heat with a liberal helping of old age thrown in, come to think of it I am not so sprightly myself these days.

No real increase in pain which is what the Wiz is waiting for as soon as that happens she will switch to Raduim 223.

Just had a thought how easy these things roll of my tongue after 3 years of living with this disease how remarkable we are at adapting to situations .

So many at the moment going through tough times the song that springs to mind tonight has to be Simon and Garfunkal !Bridge over Troubled Water!

I'll leave with you that thought

Much love to all

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Jul 2016 at 19:29

Entering the unknown again is always difficult. I have no easy answers. I have just had two severe bacterial infections which did have stomach cramps as a symptom so assume they will check out infections. Nasty and sudden but lasts ten days at most and not linked. The pains may obviously be linked to the bone mets. Do you have a copy of Trevor's last bone scan? When I get new pain I check my last scan to see if it corresponds with where the pain is. If it is I worry, if not I breathe a sigh of relief.

Hope these things work themselves out, Julie. If the GP comes up with a 'normal' solution, you can google that but beware looking around for symptoms. I used to have a symptoms book and in 1982 I had a swollen testicle so looked it up and it told me testicualr cancer. I laughed! Me, 29, cancer. A week later I was diagnosed with testicular cancer. Stay positive.

User
Posted 07 Sep 2016 at 09:47
Hello all I havebeen following this post and although I am new to the forum and at the start of the journey with my OH who was diagnosed in June with a G 10 I just wanted to add my love and respect to you all. It must be such a comfort when things get difficult and to me Julie, I don't know you but I think you and all the others staying strong and positive, well on the outside, is worth so much. I only hope I can draw inspiration and strength from you all when I need it.

Thank you so much.

Love and very best wishes

Yvonne

User
Posted 12 Sep 2016 at 23:43
Oh guys I must apologise for my last post it was all a bit down , I have re read it and it was almost like I had given some one the stats and said stick that on the forum for me. .

So any way here I am not quite a bounce back but more back to my old self, The puppies are adorable and new owners say "How can you part with them " "you must be so sad when they leave" and I am thinking are you Mad ! Are you Fricking Mad, They are just s*** machines ,they look so sweet and yes they are adorable but a litter of five puppies produce at least 25 poops per day and they are so darn happy that as soon as they see me they are skidding and treading in the poop . James and Zack are brilliant and the most used words in our house is " Can Some one Do A Poo Run". Constipation is my friend 🤗 As soon as I wake up I think please let those pups be constipated. 😉.

So yes SS it was a typo 2160 and that is just the PSA not the number of puppy poops. 😆 Yes I am worried guys but hey I have been worried since the start , the last few days T has seemed more like his old self from the start we have had such a hard journey but somehow and I don't no how he has continued to defy the odds and I hope any newbies reading with a similar prognosis can take comfort from this post. Today he has helped strim some grass, done the school run , been to Tesco , fed the dogs . OK so he can't bend to help with puppy poop but I think that is pretty amazing . Or is he having me on 🤔

Bone scans are booked , blood tests are done , so onwards and upwards ,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 04 Oct 2016 at 21:02
2,340 not sure what happened but think my iPad had a coronary. The Wiz is contacting Addenbrooks because she is confused but more good news new NICE ruling is he can start Raduim 223 and stay on Abbi at the same time , so watch this space guys.

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Dec 2016 at 21:34
Guys I don't deserve your lovely comments although they have cheered me up no end , well cheered me up and made me cry in equal measure. Thank you all of you.

It's funny isn't it when the going gets tough we head for home because home is where we feel safe and home for me when the going gets tough is right here on the forum .

Not sure if any of you have noticed but I have been told that I have a brilliant sense of humour and I must admit I do think laughter is the spice of life , well apart from Turmeric that's also a pretty good spice.

I just had a flash back to my dads funeral , I loved my dad beyond measure and still do my mum and dad had a balcony on the front of there house and myself and my brother decided to be there together and watch people arriving . Everything was very solemn and dignified until my Auntie Rita arrived (she had a shortened leg and wore a built up boot) hence her driving and especially her parking wasn't very good. She took 25 mins to park and managed to flatten the 4 cones put out for the hearse. She then went on to blame my Uncle Bill in a very loud voice saying his " back a bit " forward a bit " was to blame . I could hear my dad chuckling as well .

Laughter is the best medicine but some times it is hard and at the moment even I am finding it hard. the breathing issues are better and the bp has returned to near normal so that's some good news but he has now got pain in his hip and left leg ( Trevor is adamant it's syatica ) me not so sure so very gently managed to persuade him to see the GP. GP has prescribed stronger pain killers his walking is quite bad.

He is sleeping loads and is very low in himself , the teeth situation is still far from resolved and we are still waiting for the second referral . Not being able to eat and chew is depressing him ( Trevor loves his food) . Just made him a fish pie and put some mushrooms in that I thought would be soft but he couldn't chew them.

It's the eve of our eldest sons birthday tomorrow he will be 17 , that's the hardest part of all of this just trying to make life as normal as possible for the boys. Things to be thankful for though are the last 3 years my handsome boy has had his dad there to see him through from being a child to becoming a young man, I am so happy for that.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Dec 2016 at 23:16

Mike was fine the first three days after the radium but then it hit, like you we were told to increase his meds. The oncologist said to expect a spike in the pain with the first two treatments. He didn't experiences sickness but did have diarrhoea just one day though. Xxx

User
Posted 26 Dec 2016 at 01:30
Not such a good post so sorry guys, Xmas day should be such a happy day but I suppose for many a stressful day, well for us an emotional day. I have always kept my posts upbeat but today has been emotional.

Trevor got tearful when he was opening his presents and left the room unable to control the tears the boys were shocked and obviously worried. I managed to calm the situation and bring him back but I tell ya this clucking disease has got a lot to answer for.

Between us we managed to pull everything back for the boys but it was hard flicking hard.

Without a minor miracle this will be Trevor's last Xmas and the pressure to make it wonderful with all of that sadness hanging over us is almost impossible. Sorry if I am making everything sound miserable but this is our reality.

He went to bed at 4 his HB is low again so his energy levels are low.

Tomorrow or is that today is another day and I suppose it is apt that it is Boxing Day because I will be fighting to make it a normal day .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Dec 2016 at 00:36
Well what's happening in our household in True British Style we have managed to pull ourselves together hitch up our britches and carry on. There really was only two alternatives pull the quilt over our heads in self pity or get on with life.

So although unspoken it was a kind of let's open the sweetie tins and move on. So the after eight mints and the cadburys Rosie's have taken a bit of a bashing but hey that's Xmas isn't it.

So things are a little bit more like normal in as much as we are ignoring the elephant in the room and oh boy is that elephant huge but Xmas is even huger when you have children.

I say things are more like normal well I suppose for us our emergency trip to the vet today is pretty normal . It would be crazy for most other families but for us just an ordinary day.

I have to back track on this story so firstly to set the scene I am a very well respected Breeder of Cocker Spaniels (as some of you will know) I don't agree with all of these cross breeds , Cocker Jacks, Cocker Poos, and all of the other weirdly named cross breeds out there that people charge huge amounts of money for what is essentially a mongrel.

So enter Tulip our Bull Terrier who had her season about 6 weeks ago and I have noticed over the last few weeks that she has been gaining weight and also been suspiciously subdued .

So the thought that I might be the first person ever to produce the very first out cross between a Bull Terrier and a Cocker Spaniel was not only terrifying but would have been so embarrassing.😱

So emergency scan results are we are not , I say not expecting a litter of BULL COCKS and it is probably a phantom pregnancy . (Pheeewwww)

My vet didn't charge me for the scan he was doubled up laughing when he said what would you call them after I told him BULL COCKS he said I should be charging him for the laugh. Can you imagine the que of plumbers trying to but them😆

So just a day in the life of us, it is more like Monty Python our lives.

I always cook a roast lamb dinner with all of the trimmings on New Years Day followed by charades so Trevor is not up for charades so I am going to order board games instead . This will be our next big hurdle.

Wishing Xmas and new year away is so hard but I always think in our hardest times there are children out there suffering from cancer , children who have been in hospital over the Xmas , there are many who were not at home to open the Rosie's tin.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Jan 2017 at 18:26

I love you, crazy lady - I can't bear all the insensitive sods that have sent me Christmas cards with comments like 'hope this is your best one yet' or 'have a great new year' .... wtf? So I am not going to wish you a happy new year, simply that whatever 2017 brings you, we will be here xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jan 2017 at 18:15
I am going to make this a very quick update before the server goes down again 😄

So after the emotional and physical dramas over the last few weeks what can I say this man of mine has rallied beyond belief, the slow release morphine has enabled him to be back up on his feet, driving and he has just been outside lighting a bonfire.

I have said this many times on here he is obviously not human and quite how he does it I will never know.

Second Raduim was last Tue (drove himself there and back)

I can now see our 4 year Canservasory in May in sight ok he won't be attempting Britains Strongest man or Running a Marothon any time soon but for know the Dingy is patched and we are rowing towards the shore.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Jan 2017 at 18:57

Just to be clear, the strap-on is actually a ride-on mower which Trevor doesn't use very often. I wouldn't like anyone to get the wrong idea about him :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jan 2017 at 22:51
Oh Gosh Oh Dear I haven't been able to log on for days ( talk about withdrawal symptoms)

Seriously Guys I thought I had been Nominated I couldn't figure it out I thought I have said far worse in the past ! Honestly I have been much more near the knuckle ! I couldn't even log on to see what I might have said . That's it I thought there is no doubt I have been Nominated . Then of course it struck me like a thunder bolt would I have not got a letter in the post ,

So I have been nonchalantly hanging about by the post box of course not wanting to attract attention (which is hard when you are dressed in a red dressing gown with a hood).

Then that's when I had a breakthrough in my thinking I thought some one and you always get one would have messaged me through fb to say Jules I didn't want to tell you but you have been Nominated.

We have all got those friends that can't wait to tell you bad news , so that's when I thought ( you have to go with me on this thought process) I thought are they not saying anything because

A They don't want to give me bad news

B There isn't any bad news

C There is no forum it's all been a dream

D there has been a major C.... up with admin.

E Julie you have been Nominated and the letter hasn't arrived yet . 😆😆😆😆😆😆

BFN

Julie X

Sorry not Nominated! Moderated😆😆😆😆

Edited by member 31 Jan 2017 at 23:01  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Feb 2017 at 07:15

Your slightest wish, my dear, is my command:

http://community.prostatecanceruk.org/posts/t9751p2-Advanced-prostat-cancer-part-2?=#post122611

Page down to 29 November 2014.

 

User
Posted 09 Feb 2017 at 18:28
Julie I loved that poem then and even more now

Who would have thought back then in 2014 that in 2017 we would still be riding that train you sitting there with your pink fondant fancies and me staring at all the ticket windows thinking bugger that your can stick your treatment 😀

Would be nice once in a while to just step off and have a bit of our old life's back

Love to you all

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 17 Feb 2017 at 09:25

As ever you manage to make me smile and cry all at the same time Julie. Thanks so much for the update. All bits crossed for you both.

And here's one that was clearly written especially for you...

https://www.youtube.com/watch?v=GhkwRBGZEN4

I'm a Woman W.O.M.A.N.

I can wash out forty four pairs of socks and have 'em hangin' out on the line
I can starch and iron two dozens shirts 'fore you can count from one to nine
I can scoop up a great big dipper full of lard from the drippin's can
Throw it in the skillet, go out and do my shopping, be back before it melts in the pan
'Cause I'm a woman! W-O-M-A-N, I'll say it again

I can rub and scrub til this old house is shinin' like a dime
Feed the baby, grease the car, and powder my face at the same time
Get all dressed up, go out and swing 'til four A.M. and then
Lay down at five, jump up at six, and start all over again
'Cause I'm a woman! W-O-M-A-N, I'll say it again

If you come to me sickly you know I'm gonna make you well
If you come to me all hexed up you know I'm gonna break the spell
If you come to me hungry you know I'm gonna fill you full of grits
If it's lovin' you're likin, I'll kiss you and give you the shiverin' fits
'Cause I'm a woman! W-O-M-A-N, I'll say it again

I got a twenty dollar gold piece says there ain't nothing I can't do
I can make a dress out of a feed bag and I can make a man out of you

'Cause I'm a woman! A W-O-M-A-N, I'll say it again
'Cause I'm a woman! W-O-M-A-N, and that's all.

E

x

User
Posted 20 Feb 2017 at 21:57
What a turn around Oncology today and in walks the Wiz with the biggest smile on her face so drum roll please!

PSA down from 3188- to - 30552

ALP down from 494- to - 355

So ok I know pretty scary figures BUT we are going down and we are happy with those figures especially Trevor he is now on cloud nine and after the last week this is just what he needed.

His mouth and Jaw pain is continuing to improve and he is now able to eat slightly more solid food ( cooked him a shepherds pie and added carrot , parsnip, brussel sprouts into the mash ) sounds healthy doesn't it but sorry guys inthen added cheese 2 tons of butter and a splash of double cream even the kids ate it🤗

The Wiz thinks the growth in his jaw is probably extra bone growth, and I am going to roll with that. He has lost another 2 kilos but I am planing to get some more of my special mash down him.😍

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Mar 2017 at 20:57

Julie is having trouble accessing the forum (her log in doesn't work so perhaps it is a glitch but it may be that the moderators are finally taking action to minimise the risk of us all laughing too much) but she has asked me to pass on the following:-

"Trevor has been blue lighted today with chest pains , sweating and blurred vision to Peterborough we are still waiting on blood results.

He had a appointment for a nuclear scan on Thur to investigate but things are escalating. I will update as soon as I'm able to.
Xx"

Carol at PCUK is working to resolve the problem and get Julie back with us asap but I have asked her to let me know what is happening in the meantime. T has been blue-lighted so many times before but I know we will all be worried by this news.

Edited by member 13 Mar 2017 at 22:02  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Mar 2017 at 00:10

My head is full of disturbing images of po-going up open drawbridges on mobility scooters shouting 'tits' in a time-lapse. Best I go and lie down in a darkened room with a wet flannel over my face until I calm down.

Gems you lot!

E

x

User
Posted 23 Mar 2017 at 09:21
Hi Julie,

I have slight bone thinning which I was told was as a result of the HT. My oncologist prescribed Adcal-D3 tablets. When I recently collected my tablets the pharmacist wanted to see me for a medication check, she said vitamin D picks up the calcium from your system (blood stream I think) and puts it into your bones.

Arthur

User
Posted 30 May 2017 at 00:31

You need to move to Tyne & Wear Julie - everyone wears their pyjamas to the shops and thinks nothing of it!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jun 2017 at 00:55
Yes Lyn he is on a general ward but on my Insistence and with Claire's help he will be moved as soon as a bed becomes available onto Oncology. Apparently there are only 18 beds on Oncology as aposed to 30 on a general ward.

I have told all of them that he needs ro be moved ASAP and I don't want him on the ward that he is on a minute longer than he needs to be .

I have reported it to PALS but just by phone and I will be taking it further . At the moment they are very apologetic on the ward and have organised a electronic bed / an air mattress. The ward are are know trying to bend over backwards but it is all to little to late.

I am not a very assertive person but back me into a corner a watch this Lioness Roar.

Trevor is fighting and as long as he is fighting I am right there behind him .

It ain't over till the fat lady sings and from Trevor and myself she ain't singing YET.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Jun 2017 at 21:41
SS

The force is with you

hugs xxxxxx

User
Posted 30 Jun 2017 at 21:36
I've not heard anything for a few days, I think radio silence is to be expected but am hoping that it's for good reasons and not bad.

Devonmaid

User
Posted 12 Jul 2017 at 00:03
Just a quickie Guys to say he is home and tucked up in bed!

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Aug 2017 at 11:25

Hi Julie and Trevor,

We're in awe of 'Super Trev'.

As you say, how crazy it is that the ward doctor gave him a few weeks to live.
He seriously underestimated who he was dealing with.

Your two are a force of nature, absolutely unstoppable, and your posts light up the days of those here who have been worried sick after being given similar prognoses by doctors.

These medics don't seem to realise that patients are not just statistics.

We're each unique, and if you add in defiance and stubbornness, then statistics are out the window!

Long may Trevor continue to defy them all.

Warmest wishes,

George & Lynn

User
Posted 24 Sep 2017 at 14:13

SLOW COOKED SHOULDER OF LAMB IN FOIL

Ingredients for 2 - 3
A lean half shoulder of lamb, preferably blade.
6 small – medium carrots, peeled and topped but left whole
2 medium leeks, peeled, darkest green removed and each cut into 3 pieces
2 – 4 cloves garlic, peeled and thinly sliced (optional)
Chopped herbs – any combination of thyme, mint, rosemary
500 ml chicken or lamb stock – from stock cube is fine as long as it’s low salt
e.g. Kallo
1 tablespoon oil
Seasoning


Method
Place a large piece of turkey foil in a roasting pan, long enough to make a not
too tight envelope around the lamb and vegetables. Take care not to tear or
puncture it.
Place the carrots and leeks in the foil.
Trim any excess fat from underneath the lamb and from the sides of the joint.
Heat the oil in a large frying pan and brown the lamb all over, particularly the
skin side. Drain the lamb of fat and place it on top of the vegetables. Sprinkle
over the herbs and the garlic slices, if using. Add about 100 ml liquid - red or
white wine, or sherry, or some of the stock. Season with a little salt (not too
much as the gravy is made by reduction) and fresh ground pepper. Bring two
edges of the foil together and fold them to make a seal. Now fold or scrunch
up the other two edges to make a seal each side. You should now have a not
too tight foil parcel in the roasting pan.
Place the pan in the oven an cook at 150 C (Fan 135 C) for 3½ hours.
Carfully open the foil and use a couple of forks to move the lamb to an
ovenproof dish. The lamb should be very soft and easy to pull away from the
bone. If you want to crisp the skin a bit, turn the oven up to 220 C (Fan 200 C)
and cook the lamb for about a further 15 mins. Otherwise just keep it warm.
Meanwhile, transfer the vegetables to a dish and keep warm. Pour the liquid
from the foil into a saucepan. Add the stock and boil rapidly to reduce and
create a nice gravy. Season to taste. If you want a minty gravy, add a
teaspoon or two of mint sauce.


Options
Whole shoulder can be cooked like this, but will probably take 4 –5 hours
depending on size. Most root vegetables including small potatoes can be
used. Peeled whole banana shallots are a nice alternative to leeks.
For a Spanish flavour use peppers cut into large chunks instead of leeks, add
a teaspoon or two of smoked paprika and some dry sherry to the foil parcel.
Curry spices can also be used for an Indian flavour.

User
Posted 27 Oct 2017 at 20:17

Every fibre of my body wants to be there to take some of the strain. Every bit of my heart is crying for you, for T and for the boys. The best anyone can hope for is that the pain is managed and T doesn't fight so hard that he ends up battling against himself.

Is there someone that can stay with the boys if you need to be at the hospital? Are you okay with getting taxis or does the forum emergency 🚒 🚨team need to step in? You know that we would do anything we could to ease this for you xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Oct 2017 at 20:45

Is he only having antibiotics? If so, that may be more about keeping him comfortable for the time that is remaining - uncontrolled infection could cause unnecessary discomfort and distress? I don't think ABs could keep T with you for longer than his body can bear.

I know what old friends would be telling you - Alathays would say that the fat lady isn't singing yet, Topgun would offer to lock her in the cellar but Spurspark and Nimeniton would say let her sing, the music may be very beautiful.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Nov 2017 at 20:51

Julie
Forgive me for taking so long to send my heartfelt sympathies, I’ve been in denial land so not on here. You have been so very kind & encouraging to me & I cannot thank you enough for that & for sharing your journey with Trevor & your dear boys. All I can do is wish you peace, the comfort of love from those who surround you, strength for the coming changes & hope for brighter days when the memories of the laughter outweigh the tears. Trevor & yourself will always be a part of so many of our journeys so he will never be forgotten. We will share stories with others of the The Legend Trevor & of his remarkable fire breathing wife whose boundless love and comfort blankets seeded rainbows in so many dark skies.
Love to you & your boys
Mel x

User
Posted 28 May 2014 at 00:37
Hi Julie,

Whatever your beliefs the miracle of life is a 4 week old Grandson😍 even if he is a bit behind in his driving skills🚙

I hope Trevor is bearing up and coping with your zany humour.

Take care,

Life is for living

Barry (alias Barrington )

User
Posted 28 May 2014 at 08:46

Julie my other half is a complete non-believer too, much as Trevor believes in fact. Me, I'm more ambivalent (~called hedging my bets perhaps!!)
We co-exist happily together each with our own views. I am happy to accept anyone's bviews as long as they don't start telling me to change mine.

Edited by member 06 Jun 2014 at 11:52  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 02 Jun 2014 at 09:22
I've found your new hiding hole, Julie.

I don't intend to change anyone's views, we still pray for you all, no matter what ! The medics can't do it all themselves.

Julie, reading your last posting before you moved I'm surprised with how well you are coping, well done girl !!

In our house we've only had 2 breast cancers, 1 basal cell carcinoma and my PCa, so I count ourselves very lucky.

Blessings to you all.

Chris.

User
Posted 06 Jun 2014 at 10:42

Onco visit yesterday, I was running late as usual so decided to wear my new skirt rather than iron something. Off we toddle slightly apprehensive as T missed a Zometa infusion when he was in having his stents fitted and we were both wondering would this affect his psa.

I helped him off with his boots for his weigh in (3kilo lost but he has been very careful with his diet) the extra weight he had gained was probably not helping with the heart issues, any way bending down back on with his boots. We go and sit back down and a very nice lady came over and said "excuse me dear your label is hanging out on your skirthttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif Know every one in Oncology knows how fat I really am and how much I paid for my skirt , if Trevor didn't have mets in his ribs I would have elbowed him for not telling me.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Score on the door 15.4 so another drop for those newbies who haven't read our journey his starting point was 13000. Trevor was for the first time slightly negative at this drop, I think because he has had such huge drops in the past , his last psa 12 weeks ago was 25.2 . After I gave him the pep talk , any drop is good and after missing his last infusion etc etc he seemed more positive.

We then spent nearly an hour with our lovely oncology nurse Sue, she also gave him the pep talk and asked him how he copes with everything for the first time since his dx he opened up and admitted that some days he wants to give up. Again for those newbies (heart attack, stroke, chronic asthma) and of course cancer. Our roller coaster is pretty steep. He then looked at me and answered for Julie and my boys that's why I don't give up. Yes I was teary eyed. Then typical T said shall we have lunch in the canteen. So off we toddled but this time with my label firmly tucked in.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Jun 2014 at 11:55
At least it was only the label and not the skirt tucked into your knickers. Now that's embarrassing believe me!!

You are both such strong people. All the best Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Jun 2014 at 12:46

Must admit Julie, I'm fast getting to the point where I don't want to know some of Neil's results ! Good that Trevor's PSA is on a downward slide though. I rarely wear shirts but am often guilty of wearing my pants back to front. Thankfully a reasonably quiet week here, but it's another oncology appointment and a second bout of chemo for Neil next week. I can't get over how frail he is starting to look. Like Trev, from what he has said, he carries on for me. Have just taken him up to Bristol Downs where we sat in the van and had coffee and carrot cake, just take one day at a time and see how he feels. Love to you both !

Fiona.

User
Posted 07 Jun 2014 at 11:28

Hi SS Julie ( for newbies Julie and I are Soul Sisters)

Your news of Trevor's PSA continuing to drop has cheered me up no end in what has been an awful week not just for me and my family but for others as well. Just tell Trevor that the next drop will take him to a score 1000th of that at diagnosis very , very few Men get to say that.

I laughed at you and your label, unlike others I did not envisage you with your skirt tucked in your nicks more of a Paddington Bear moment 'If found please return to Tom Cruise' or something.

The harsh reality of "man jobs" has hit me this week, I have never been any good with gadgets or tools maybe because I have never had to be, so this week I decided to take on the strimmer ..... the results were a little haphazard as in oops I didn't like that poppy anyway and oh s..t that was my own foot. After about two hours I had managed to complete the task of edging all our lawns, significantly reduced the stock of plants, almost remove a toe or two and finally the wretched thing stopped working. How was I to know that rack I took it off on the wall was the thing that charged it ! My next door neighbour was very sweet and refrained from telling me what a muppet I was. He was very sweet and actually mowed the lawns for me as he was worried I might do serious damage with the mower. Maybe I need some of TGs super grass stuff.

Tomorrow I will see what havoc I can cause with a hedge trimmer (Chainsaw massacre part 3 coming up I fear)

Maybe I need to come and get lessons from you, Trevor and the boys xxxxx

your SS forever

Mo

xxx

User
Posted 08 Jun 2014 at 11:44

The Man Jobs,

Mo maybe we should start a new thread with helpful hints and operating instructions for all of us lady's that find Man Jobs so difficult. Of course then we would have the big debate on which of the 24 headings we list it under.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif and a route map would be needed to help us find it again.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I am no shrinking violet and years ago actually built a brick wall, OK not exactly a wall more of a brick border, but it was 4 bricks high and in a straight line. So why do I find all of the jobs that Trevor used to do so difficult. I was known locally as the flat pack Queen, I can assemble anything in flat pack form faster than you can say Ikea.

Give me anything that needs plugging in and I am totally useless and as for the ride on, well that's a drama in itself. I can't even get on it, let alone start the blooming thing and yet I watch Zack and he is 9 and he is zooming up and down on it. I find it very frustrating.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I have taken a leaf out of TG's  book, (no pun intended) not the fake grass that's not possible in an acre. Fake flowers, I kid you not. My plant pots are brimming with colourful blooms, they don't need watering , pruning or dead heading. So I have got that one sorted.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Sep 2014 at 12:18
SS I am looking forward to seeing this interior design fest ..silver and grey I cannot believe that you have not put purple or red in amongst that somehow.

Hope all went well with Ts check up, post soon or we will all be chewing our nails again.

xxx

Mo

User
Posted 17 Sep 2014 at 20:44

Lyn thanks for reminding me of the missed infusion, I had forgotten about that. As you say it may have nothing to do with the rise but Trevor was immediately lifted when I mentioned it.

Our lovely urology Nurse only works Tue-Thur and our appointments have been moved to Fri so we didn't see her but I have left a message saying that I want Ts alp and T levels phoned over. That was Mon I left the message and so far nothing, so I will be ringing again in the morning. Thanks to PRO-MO for the suggestion.

Alison, Nanny, I love it. Casodex was added last year so we have already used that option.

News front the ride on is now fixed again, it spends more time at the pig farm (that's where our ride on fixer man lives) than it does in our barn.

I have just realised where the silver grey inspiration came from, I just caught sight of my self in the mirror, OH NO it's my hair.

Love to all as always.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Nov 2014 at 22:21

Well it's nearly that time again we are off to see the Wizard tomorrow, my how time flies. Trevor has been down with his usual breathing difficulties for the last few days and is back on steroids this morning. I have to smile as our GP now asks me how many days I think he needs and would I like them reduced gradually or a abrupt stop. Who put me in charge.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

 

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Nov 2014 at 06:57

Hope all goes well today Julie

Take care
Bri x

User
Posted 07 Nov 2014 at 07:58

Good Luck today Julie oh and Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 Nov 2014 at 08:15
Thinking of you and Trevor my SS

I think the change in weather has affected a lot of people with respiratory issues, make you sure you stay snuggly warm xxx

Mo

User
Posted 07 Nov 2014 at 08:49

Fingers crossed for you.

User
Posted 07 Nov 2014 at 14:05

Same here, hope all goes well !

 

Fiona x

User
Posted 07 Nov 2014 at 16:54
Hi Julie

wishing you both good luck for today.I can relate to Tremors breathing problems not nice.

So no giving him a wee poke.

Love and best Wishes

Carol x

User
Posted 07 Nov 2014 at 18:56
Hi Julie

Hoping everything went well. We have our visit to oncology on Monday - can't say I'm looking forward to it.

The change in weather doesn't help those with breathing difficulties, hoping Trevor's asthma is under control now.

Big love

Allison xx

User
Posted 07 Nov 2014 at 21:50
Hi Julie

sorry to read your news.I have written 6 replys and deleted them nothing I can say would help with how you must be feeling today.

As for blumicamide I agree with you.

Will be thinking of you both.

Best Wishes

Carol x

Edited by member 07 Nov 2014 at 22:50  | Reason: Not specified

User
Posted 07 Nov 2014 at 22:12
Julie my friend

not the news you wanted the rise In PSA does seem to confirm that Trevor is now technically either castrate resiatant or on the way to it. I could try and explain why stopping Biculatmide is not as crazy as it sounds but I am sure Lyn or Rob or one of the others who has much more technical knowledge will do a much better job.

I have been thinking about you all day today. I will ring you tomorrow night or Sunday, just let you have a while to draw breath and get to grips with the next battle plan.

xxxx

Mo

User
Posted 08 Nov 2014 at 02:33

Julie, not what I was hoping to see and definitely not what you wanted to hear. I think you have recalled wrongly though; either it wasn't me that said it or you have remembered upside down - to be hormone independent the PSA needs to be rising despite T being below castrate level. Simply, the cancer has been starved, is still being starved and so has found an alternative food source. Or .... There are no crisps in the house, your boys want crisps, they crave crisps, there are still no crisps but they are starving so they learn to like apples instead.

The explanation of antiandrogen withdrawal response (AAWR) is I think only a theory but it's believed that in men who have casodex for a long time, the cancer can learn to use the casodex as a food source so it ends up doing the opposite to what was intended. So the boys crave crisps, you give them apples instead but if they eat too many apples, eventually they might learn how to make the apples into crisps. Take the apples away and the boys have nothing to eat.

How has Trevor responded to the news?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Nov 2014 at 09:57

To the Lady in the red hat who never sleeps thank you for that brilliant analogy (how did you get so smart)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif .  Trevor showed no outward signs yesterday although I could tell he was devastated. On leaving the hospital  his first thought was his tummy and where we were going to have lunch he amazes me that he can eat and think of food at these times. I am sure if he had been fighting in the trenches in world war 1 he would have had a flag to raise to say stop Guys it's lunchtime.

So in M&S over his Penang Curry he paused mid mouthful , sighed and said" So it's up again " my reply was" Do you want half of this Turkey sandwich".

Getting back to food analogies Trevor is like an onion, brown and crusty on the outside with so many layers it is difficult sometimes to peel them back and get to the middle. You know what it is like when you have been with some one for so many years, you don't always need words to know how they are feeling.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Nov 2014 at 10:34
So sorry to hear your news and thank you for replying to my post when you have obviously had your own bad news yesterday. I will be

thinking of you both. X

User
Posted 08 Nov 2014 at 18:41
Julie

I posted on here this morning but the website was wobbly and my post obviously got the chop! A few posts have come up since then.

I love that Trevor is still worried about his tummy, good for him.

I also commented on Lyn's great way of explaining the crisps and apples, one of these days we should get her to do the birds and the bees so we can use that with kids and grandchildren!!

will ring sunday evening

xx

Mo

User
Posted 08 Nov 2014 at 19:28

Ah didn't go back far enough http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Sorry to hear the PSA has gone up again.

Now Abbi i would give it a go, i have read that once the body has been loaded with the drug say 2 weeks worth of 4 tablets a day the dose can be reduced to one tablet and it works just as well. that came from the guy that invented it.

More than happy to try it, anything for a friend http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Honestly though Julie, not good news but i would defiantly give it a go.

We all send our Love

Si

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Nov 2014 at 19:56

Just found this Julie might be of interest

Si xx

 

I don’t understand why if I have hormone resistant advanced prostate cancer why the new drugs, Zytiga and Xtandi work. These drugs are still hormone therapies, is my prostate cancer hormone resistant? I recently received an email asking me this question and I thought it might be a question many people have, so I am going to answer this on the blog.

First, I want to be clear, yes Zytiga and Xtandi are both hormonal therapies that do work for many men when their cancer has been classified as hormone resistant.

The failure of Lupron etc. and Casodex does not mean that our cancer no longer is dependent upon testosterone. What it really means is that our cancer now has adapted itself and become more sensitive to lower levels of testosterone and is able to find alternative sources of testosterone. Simply put, the Lupron and Casodex are no longer powerful enough to do the job.

This change is the result of three different mechanisms. We have now found out that prostate cancer cells themselves are capable of making their own testosterone, making them independent of outside sources; the cancer cells often are able to modify their androgen receptor so that Casodex encourages the cancer growth by treating the drug as if it were testosterone. (This is why in many men stopping Casodex will initiate a positive response) and the androgen receptor becomes more sensitive so that it needs much lower levels of testosterone to continue growing.

To be accurate it is quite uncommon for prostate cancer to become androgen independent. This understanding of the progression of prostate has led us to the new forms of hormone therapy using Zytiga and Xtandi

Zytiga (given along with prednisone) was the first FDA-approved drug to respond to this understanding. Zytiga ‘s mechanism of operation is simple, it is much more efficient at blocking testosterone production then Lupron. Its most important difference is that it blocks testosterone production throughout the body; including the adrenal glands and the cancer cell itself. Zytiga is more efficient at lowering the levels of testosterone production in the entire body (not just from the testis).

The other new hormone therapy drug is known as Xtandi and it has a different mechanism of action from Zytiga and the other hormone therapy drugs. Xtandi has been called a “Super Casodex” because like Casodex, it binds to the androgen receptor, however Xtandi is five fold better at competing with testosterone for the androgen receptor than is Casodex. Xtandi uses different pathways that are used by Lupron and Casodex and is able to work even while Lupron and Casodex have failed.

The bottom line is that it is a misnomer to call prostate cancer that has begun to progress in the face of Lupron (etc.) and Casodex hormone resistant. In fact prostate cancer at this stage is still dependent on the androgens, but the cancer has actually developed additional pathways around these first stage treatments so that it can continue to progress. Zytiga and Xtandi respond to these new pathways, but they too only respond for a limited time as this cancer is able to develop even more new pathways.

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Nov 2014 at 20:46

In other words then, Zytiga is spread on the garden to kill the apple trees and xtandi is like putting a blindfold on so you can't find the crips?

Allison, you have seen my blue hat. Phew!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Nov 2014 at 21:56

Si is that a medical dictionary in your pocket or are you just pleased to see me.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Nov 2014 at 23:50

I don't know about the Apples and Crisps, straws comes to my mind, clutching at! Lyn, you certainly can give some illuminatory responses, Simon, where did you find that post?

Julie, not the required numbers?, ask for a redial!, Seriously, it is good for Trevor to be thinking about food, but as Lyn also says, "she is worried about you" well, so are we, your sense of humour is only a mask which you use to good effect, SO TAKE CARE of yourself, sweet girl.

God bless,
Chris.

User
Posted 09 Nov 2014 at 09:47

Thinking of you both, not the results you wanted but lovely that everyone on the forum rallies round with love, advice and support, often what gets us through ! Now off for a dog walk having been gardening at 8.am ! Takes my mind off things though at this rate I'll be needing some of that sandwich soon to put on weight,

 

Lots of love, Fiona. x

User
Posted 30 Dec 2014 at 19:18

Slightly more optimistic news T has Pneumonia so OK not a brilliant diagnosis with his other health issues but he as usual is fighting back and so far winning. His temp has returned to normal and the BP is rising slowly he was started on IV fluids and Aunty Bs before leaving here and that has continued and is doing the trick. He is sitting up , chatting and managed to shower and shave by himself. So a huge improvement from how he was two days ago, I on the other hand am still a quivering wreck and am know facing up to the fact that at this rate he will probably out live me.

HAPPY NEW YEAR GUYS

LOTS OF LOVE

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 31 Dec 2014 at 17:58

Great to hear things are on the up Julie....as others have said take care of yourself too.

Oh and you get a gong for managing to get Lyn to admit she had a wobble at your poem (she's a softie really ) ;-)

Bri

User
Posted 04 Jan 2015 at 22:43

Thank you SS,

firstly I cannot believe that you lot got me to move over too the dark side and know you have all bu@@ered of and left me on my own, I only came to keep you lot company.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

So the news is 2 steps forward and 4 steps back the spikes in temp and low BP are indicating that the virus has not been knocked out . To quote the DR his bloods are all over the place as usual we are not sure if this is from PC related issues or the Pneumonia . He had a bad day yesterday very high temp and very tired but seems much more perky today. He is as usual very preoccupied with the hospital menu but then he asked for an egg sandwich half an hour before I called the ambulance (and he ate it).

We were concentrating on the PC and our next Onco appointment on Fri (this is for scan results and maybe starting Abi) that we didn't see the Amsterdam Express coming round the corner. He is still on the short stay ward so I am taking that as a positive.

Life eh , it can get a bit tough at times.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Jan 2015 at 21:23

Good news at last Trevor arrived home at around 6.30 so finally I can say HAPPY NEW YEAR. He still looks weak and a little frazzled around the edges but soooooooooooooo much better than when he left.

He certainly likes to keep me on my toes, BP is still on the low side but his bloods are much better and temp seems to be behaving. I think he is just trying to go through the alphabet of medical ailments we must be getting close to Z.

I just want to say a HUGE Thank you for all of your messages of support . It means so much and in dark hours keeps me afloat .

Lyn thank you for offers of help , Si and Mandy looking forward to Thur you can both have a go on the ride on (no fighting or racing) and there are more than enough dogs to go round.

Thanks again to all. XX

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Jan 2015 at 13:32

Bloody hell Mo is that lot for me to eat on the way, it will only take an hour, oh well i will try my best.

Hang on i have just noticed it is ALL for Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

Better make an effort as well then, i will unwrap some of the Christmas biccies and make out i have baked them http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

 

See you Thursday

Don't deny the diagnosis; try to defy the verdict
User
Posted 06 Jan 2015 at 20:44
I got a tiny bit carried away with the chicken, enough to feed the most hungry family.good news it won't smell in the car as it is now foil sealed and marinating.

Julie I hope you have time to make rice and peas to go with it not sure if I know how to?!!!

Xxx

Mo

User
Posted 08 Jan 2015 at 21:47

What a lovely day , Mandy and Si arrived with enough food to feed an army . We had a lovely afternoon chatting then for tea we had Mandy's jerk chicken which got the thumbs up from Trevor and WOW you should see her Carrot cake . Well actually you can't see it now because we have eaten half of it.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

The boys are half way through Mandy's flap jack . I am going to hide it before I go to bed otherwise it will gone by morning.

So Onco tomorrow with results of bone and MRI scans that were done before Xmas also PSA result if we have had a drop with stopping Bicalutamide then we will hold of with Abbi tabs for now, if we have had a rise or scan results show progression then onwards and upwards with Abbi.

T has had a good day today even doing the school run this morning and even though he was slightly nervous about meeting Mandy Mo and Si he is now glad that they came and at last I know have witnesses to vouch for Trevor talking the hind legs of a donkey.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Who knows I may even get him to Newark.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Jan 2015 at 22:29
Cracking day out, I can truly say Trevor is a chatter box but I think that is because the way to a man's heart is through his stomach and we went well armed. I reckon we could have two more for Newark which would be magic as Trevor is every bit the character match of Julie. I loved chatting with him about his life growing up in the old style south London when there was still a rag and bone man with a horse and cart and a yard just around the corner.

Julie I hope you and Trevor have a very good day at the oncologist tomorrow. By the way trains run every hour from Peterborough to Newark

Xxx

Mandy Mo

User
Posted 10 Jan 2015 at 22:59

Julie

 

My PSA has risen to 1001 (like the carpet shampoo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif) but I feel just the same as when it was under 1. I get free parking at the hospital and they've arranged an MRI for me this Monday (efficient NHS or what?). I hope Trevor gets better - you just can't predict what's around the corner with this disease http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Edited by member 10 Jan 2015 at 23:00  | Reason: Not specified

Nil desperandum

Allister

User
Posted 06 Feb 2015 at 23:16

Isn't life a funny old thing, just when you think you have got a handle on it and you are predicting what is coming next it goes and swithches on you. I didn't post yesterday because to be honest I couldn't have handled anyone saying good luck for our Onco visit today. What we were expecting was the predictable psa rise and the start onto Abbi tabs.

So when we walked in and Dr T was smiling we both thought either she needs a holiday or she has some weird kind of bedside manor going on. When she stood up and hugged Trevor we both looked at each other and in a silent agreement thought YEP  she's flipped.

Up shot is, she didn't believe it , we didn't believe it PSA 81. CAN YOU BELIEVE IT. Just a quick recap for anyone not following our story

13000 start line

all the way down to 15

Last psa back up to 280

Today 81, her first question was What Have You Been doing,  she said she had to look at the results over and over, she said rarely had she seen this with no extra drugs and no extra treatment.

Dr T took notes of everything Trevor eats and drinks on a blow by blow account. She has no answers , I questioned did she have the right notes ? were the test results right ? is she mentally stable ? Am I mentally stable ? ( don't answer that one) 

So as Allison would say Ill go to the foot of our stairs.

Review in 8 weeks , Abby tabs on the shelf for know and a very happy Trevor. He skipped backed down the hall way with me in hot pursuit.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Feb 2015 at 23:51

Julie, now you have had a few days to celebrate, I am going to spoil the party a little by saying please don't forget that in some cases the PSA falling inexplicably is not a good sign - ref TopGun and Stan. The onco should know that sometimes as the PCa becomes more aggressive, it doesn't have enough energy to produce PSA any more.

Could you email the onco to ask whether she had considered this possibility and how else the disease might be measured? Is T due for a scan any time soon?

Maybe I shouldn't say anything but in both the cases above, the realisation that this was what had happened came too late. Sorry hon if you wish I had stayed quiet x

Edited by member 10 Feb 2015 at 23:52  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Feb 2015 at 16:02

This thought had occurred to me Lyn in the middle of the night when all of the what ifs are going through your head this was one of them. Then in the morning when I see Trevor's face and how on a high he is at the moment could I burst his bubble. No I couldn't and honestly what would be the point, if it was a case that the pca is advancing so aggressively and this is why the psa has dropped in all truth with Trevor's other health problems our options with treatment's are so limited. There wouldn't be much that could be done if this is the case So I chose not to mention this to him or the Oncologist.

He had scans in Nov and there was no change on the scans, at the moment he is feeling well and looking well and his bubble is about the size of a hot air balloon.

When I think back to how he was at dx and how ill he was and I didn't think he would make more than a few weeks but here we are 21mths down the line there has been many downs and a few ups , this is an up moment.

BFN

Julie X

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Mar 2015 at 21:25
Hi julie

just been catching up on your posts sometimes I hold back from posting Lynn has alredy said about the drop in psa.

If you remember Erics psa kept falling to the best it had ever been.

Trevor and Eric both with heart and other medical problems still feel Eric should never had chemo but on abby.

Hope i haven't upset you and I agree not to burst his bubble just keep him happy and please take care of yourself please.

Thinking of you both often

Carolxx

p.s. Looks like you have a new friend posting lol.

User
Posted 12 Mar 2015 at 18:55

It's lovely to hear from you Carol, I hope that life is getting easier  and you are finding some strength to get you through. Please never worry about posting things that might upset me . It is important for others to read that a falling psa with no new or extra treatments can be a sign that the cancer is advancing. 

I was glad that Lyn mentioned it , as newbies may not be aware that this can be the case. It was my first thought when Dr T announced the drop. 

I am going to do an update soon but just wanted to say hi.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Mar 2015 at 20:58
Julie SS

I am no knee expert, I do have two actually one on each side and they sort of hold the top half of my leg to the more useful bit. I know when you bump one it bolody hurts and swelling often ensues. As to watching it intently I can promise you that does not make it or anything else go down (as far as I know and IMHO) I have no smiles on my tablet or I would put one or two in now and then.

As for Trev's colour then it has to be a tumeric side effect, that or a lack of action on the ride on in the sunshine. Or not enough of my jerk chicken and carrot cake? I bet as soon as he gets outside in the spring sunshine he will start to go a little darker I always do?!!

I know the cancerversary's are always here for someone but I have to say celebrating 2 years with you and Trevor is going to be party time for me .. I never ever would have thought it possible with such an outrageous PSA and other results at diagnosis. All those blue light rides, heart issues and asthma a thousand and one puppies later and here you both are. Shamazing I love you funny, warm, bubbly and slightly crazy Lady

xx

Mo

User
Posted 25 Mar 2015 at 22:15
Oh julie

You are truly a ray of sunshine. Can't quite stop laughing at the idea of your gaze constantly seeking out Trevor's knee, it's quite weird actually and he must feel like he's got a stalker for a wife. Hopefully the swelling will go down but I do find everything takes longer as you get older, including swellings going down... Frankly, we are sitting watching telly with John sat with his Pjs rolled up with cold flannels on his ankles to reduce both swelling and intolerable itching, between you and me, it's not a pretty sight, blooming side effects eh?

I will be with you in spirit on the next visit, I am so grateful to be able to wish you a happy cancerversary, here's to many more of them.

Lots of love

Allison xxx

User
Posted 26 Mar 2015 at 10:03

Hi Julie,

So happy to read your update, certainly it has been a good news week, from Bri (more still to come) Kevlaa and now Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Girls are really looking forward to coming down but thanks to Mo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif i feel i need to come bearing gifts, now this carrot cake thing i am sorted, cake mix and some carrots http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif but what is gerk chicken, i have the chicken but cant find gerk anywherehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Mo should i be looking in the freezer or is it a tin, the girls at sainsburys looked at me as if i amhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif nuts.

Would Trevor be happy with a peanut butter sandwich i promise to put turmeric on it.

Love from us all here

Si xx

PS cant wait to see the lumpy knee  

Don't deny the diagnosis; try to defy the verdict
User
Posted 26 Mar 2015 at 20:18

Julie,

Best wishes for the next appointment.  Perhaps you can train your puppies to pull the ride on with Trev aboard  resting the knee ,getting some vit d from the sun.

Atb,El.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

User
Posted 26 Mar 2015 at 22:20

Julie I had a vision of you and Trevor having a conversation whilst laying in bed. Trevor saying "it's swollen from banging it" but of course he can't see you as your head is under the duvet staring at it and making muffled noises.

Si if you are struggling to find some gerk....why don't you try some gerkin and make gerkin chicken instead ;-)

Good to hear the two year anniversary is upon you.

Bri x


User
Posted 26 Mar 2015 at 23:24

Julie, your posts, whatever you are writing about, always make me smile, I remember Shirley asking an American, of Trevor's ancestry, how they spot a bruise and apparently it goes a purply colour!

Good luck with the next Onco visit.


Chris. xxxx

User
Posted 07 Apr 2015 at 22:40

B definitely - and C if you get the opportunity xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Apr 2015 at 23:24

Julie and Trevor,
Good luck for Friday.

I'd say B, and yes C if you are able, and an E for you entertaining us.

Big hugs,

Chris.

User
Posted 08 Apr 2015 at 07:38

It might depend on how he is feeling on the day?

But, B and C sound good.

Hope it goes well for you both.

dave

User
Posted 08 Apr 2015 at 08:29
Hi Julie

B C sounds good and of course

H. for that wicked humour of yours

good luck for friday.

Carol x

Edited by member 08 Apr 2015 at 08:35  | Reason: Not specified

User
Posted 08 Apr 2015 at 08:55
It's a B from me too

Good luck for Friday

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Apr 2015 at 09:49
Good luck and best wishes for Friday

Arthur

User
Posted 08 Apr 2015 at 13:08
Hi Julie & Trevor,

Just wanted to wish you good luck for Friday. I'll be thinking of you both.

Steve x

User
Posted 08 Apr 2015 at 13:20

You will do D and C regardless so let Trevor be happy too! Hope all goes well Friday. Look forward to some good news!

User
Posted 08 Apr 2015 at 14:24
Julie

dismiss A (nothing you can do to change it)

definitely B ..you just had to see that huge grin on Trevor's face when he had all his sons with him over the Easter weekend. He is happy, very happy so let him stay just as he is, after all he has been through he deserves to be

C .. maybe if you get a chance as it may at least give you some indication of what, why etc.

D .. my Dearest is just you all over, it is you, it is what you do and always will do Nuff said.

Others have given you E & H so for my part well there are only 2 letters I can give and they are both a lot further down the alphabet and are both the same..... SS my Soul Sister.

Make sure you also create time for you to be happy, I know just how hard it is for you to stop for a while and think of just you ....

I might be sitting thousands of miles away on Thursday when Si Si superman has his review and on Friday when you see your Onco but for every second you will all be in my heart and I will be thinking of you. I will be checking in here as soon as I land at Gatwick on Saturday morning and can get WIFI and will call you and Si as soon as I can.

love you Shamazing Lady

xx

Mo

User
Posted 08 Apr 2015 at 20:31

Hoping all goes well for Friday Trevor and Julie.

Julie I am sure you will choose to do what is right for Trevor....you have so far :)

Take care

Bri x

User
Posted 09 Apr 2015 at 21:31

Everything crossed for tomorrow Julie hope the PSA is stable.

Will drop you a message about next week

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 09 Apr 2015 at 22:54

Good luck, tomorrow.

Paul

Stay Calm And Carry On.
User
Posted 09 Apr 2015 at 23:08

Hi, Julie, just want to say good luck for tomorrow and hoping Trevor skips to Zippidy Doo Dah all the way down the corridor again!

Steph.

User
Posted 10 Apr 2015 at 06:29
Hi Julie

you are both in my thoughts today on saying that I think about you often.

GOOD LUCK.

Carol x

User
Posted 10 Apr 2015 at 23:31

How did today go, hon?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Apr 2015 at 01:01

You're one crafty lady! Well done, Julie and Trevor. Keep it up!

Paul

Stay Calm And Carry On.
User
Posted 11 Apr 2015 at 07:33
Glad to hear it was a good day, I can't comment on Trevor's knees though, is it a threat for Leicester? I trust everyone slept well last night?

A turmeric question, I have read much about benefits and I don't mind the flavour but I do not want every meal yo taste of it, I take pomi-t which has it in but what does Trevor do, thanks? Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 11 Apr 2015 at 07:52

Hi Julie & Trevor,

That's really great news!  Congratulations.

 Long may it continue.

Have a great weekend.

 Steve x

User
Posted 11 Apr 2015 at 08:08

BOOM!!!

What great news to wake up to. Well done Trevor

With regard the turmeric it will be quicker for you to list the things the Trevor doesn't  put it on http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

looking forward to seeing you next week.

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 11 Apr 2015 at 09:41

Well after a few tough weeks for a number of us, this is apparently a good news weekend 🎉 🎉 🎉

Love to you all xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Apr 2015 at 10:25

Hey Julie. What great news, this is a great return. Brave but I think right to take the kids less mystery the better for me. It's interesting that the drops are attributed to ending casodex whereas my drops are taking it, so maybe I might get same effect when it starts to rise again.

Great reporting as always, sneaky manoeuvring which worked great. No doubt turmeric on toast for lunch! Enjoy your weekend.m

User
Posted 11 Apr 2015 at 10:52

Brill news....I also think you did the right thing taking the kids.
sounds like you will all have a wonderful weekend

Take care

Bri x

User
Posted 11 Apr 2015 at 11:43

Very good news for you all...

I have been following your story Julie, but will admit that most of Trevor's ( and others ) treatments  have gone way over my head, so I don't feel able to add any meaningful contribution to your posts.

I can only admire the way you and many others  are all dealing with what life has thrown at you.

You are all an inspiration to me with your approach and attitude to this disease...

Enjoy your weekend

Best Wishes
Luther

 

User
Posted 11 Apr 2015 at 12:46

to borrow your response to me SS 

xxxxxxxxxxxxxxxxxxxxxxxYAYxxxxxxxxxxxxxxx

Mo

back on tera firma

User
Posted 11 Apr 2015 at 13:29
Hi Julie

Have read your husbands history and remarkable progress, I am so pleased to see the latest results and am so pleased for you and your family

Lesley xx

User
Posted 11 Apr 2015 at 19:05

Turmeric and suntan lotion, for the knees, ankles and foot-tops.

Excellent news, have a great weekend.

dave

User
Posted 11 Apr 2015 at 22:36

WELL DONE TREVOR and Julie. XXXX

User
Posted 12 Apr 2015 at 21:47
Ah brilliant news Julie and good on you for being sneaky and sensible. I hope the answers to your questions were what you needed to hear too.

Your posts make me laugh out loud.

Lots of love

Allison

User
Posted 08 May 2015 at 01:24
Incredible, Julie.

Send him my best wishes. Here's to many more years.

Steve x

User
Posted 08 May 2015 at 06:37

Well done Trevor and Julie...whatever you are doing keep doing it.....I also think your postings helps others immensely Julie.

Chairman of the Board...now there's a blast from the past

Take care

Bri xx

User
Posted 08 May 2015 at 08:14
What a fantastic post to read, such an inspiration to others.

Happy anniversary to you both, in the words of Bill Withers have a lovely day! 😃

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 08 May 2015 at 08:48
Trevor and Julie

What an encouraging post

Best wishes

Arthur

User
Posted 08 May 2015 at 09:16
Julie my SS, friend and comrade in laughter. ..you are just the best ever giver of hope. Trevor defies medical odds as a handful of other Men here.

Love,laughter and living you both excel at all three.

Without your support and that of others on this forum I would never have got through the last 2 years and yet because of people like you I have.

We share the hardest times to try to lighten the load, we laugh and cry together and some would say create a fair bit of mischief too !

You are one amazing woman and I love you for everything that you are and everything you are destined to be.

Looking forward to this weekend and of course Leicester where I am sure together with some of our other mischief makers we will laugh at that dragon together.

COTB ..interesting choice and Bill Withers too .. I will go for someone a little less well known but a very fitting song just for you ... Time in a bottle by Jim Croce

Xxxx

Mo

User
Posted 08 May 2015 at 10:02

Such great news, Well done Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Look forward to seeing you both tomorrow, i think a Fosters is due tomorrow .. of course with a sprinkle of turmeric

Love from us all here

Si xxx

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 May 2015 at 12:07

WOW! WTG TREVOR & JULIEhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

CONGRATULATIONS TO YOU BOTH.

 

Two great comments in there:

 

"Stick that diagnosis right up your backside. Stuff you Cancer."

 

and

 

"Laughter is my mantra, no matter how hard life gets humour will always see me through I know some will find that hard to comprehend but for me it works. Never Laugh at a live Dragon.  Cancer is the Dragon and yes Dragon I am laughing at you."

 

Si has a good one too: Don't deny the diagnosis; try to defy the verdict.

 

And everyone knows mine.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

"BOLLOCKS TO PCa"

 

I think this defiance helps us combat whatever we're facing.

 

Wishing you both many more happy years and really looking forward to seeing you, Julie, for the first time at the big bash in June.

 

Vey best wishes,

 

 

George & Lynn

 

User
Posted 08 May 2015 at 13:32

Trevor & Julie

 

Keep enjoying life, I know I do! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

 

Nil desperandum

Allister

User
Posted 08 May 2015 at 21:53

Lovely post Julie and some wonderful supportive comments above. It's a great story of survival and long may it continue. Hope to see you both soon.

User
Posted 09 May 2015 at 09:35
Oh Julie

Just wow really, what a man, what a gal. There is something about the two of you that should be bottled.

Unbelievable and very, very inspiring.

Love to your wonderful man and to you, you lovely lady you.

Love Allison

Xxxxx

User
Posted 10 May 2015 at 04:07

hi julie

been reading some of the post, find it hard to express my thoughts on them all, if you wrote it as a story people would say no that would be impossable, its an inspiration to us all, you are one terrific lady.

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 16 May 2015 at 09:41
Juie SS

83 is not a bad vintage and 53 was not all it was made out to be.

We have talked long and often about PSA and what it means to those with the worst prognosis .i.e it is just an indicator that the disease is active and possibly progressing but if T is feeling good and doing more now than he was at any previous time in his journey then that is a good result.

XXXXXXXXX Mo

User
Posted 16 May 2015 at 09:55

Julie

A mere piffle indeed. Just keep doing whatever you are and enjoy!

Paul

Stay Calm And Carry On.
User
Posted 16 May 2015 at 09:58

Time to ditch the Turmeric and get on the Si diet http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Half term soon girls need there fix of Doggies

Si  xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 May 2015 at 12:46

If he's as upbeat as he was the other week then things are probably good. Compared to his original scores it's comparatively low..but certainly worth a conversation with the consultant

See you next month

Bri

User
Posted 16 May 2015 at 13:09

I've been catching up on some of the posts (crap computer - 6 months old and slower than me with arthritis!) and have had a good laugh reading through some of the old posts.

Well done Julie and Trevor or course.

Your results that you regard as a mere piffle - well let's just say it puts things in perspective. Thank you for that.

Best wishes to you and Trevor, 15 dogs and your boys. x

We can't control the winds - but we can adjust our sails
User
Posted 30 May 2015 at 22:13

Fascinating info Julie. Must have been a great reunion.

User
Posted 30 May 2015 at 22:47

Hi Julie,

Really interesting, thanks for posting.

Steve

User
Posted 31 May 2015 at 10:46
Julie SS

Interesting post and does start to back up my theory, genetics first and environment second.

Xxx

Mo

User
Posted 08 Jun 2015 at 20:37

inspirational thread.

User
Posted 08 Jun 2015 at 22:39
Hi Julie

I'm also sure that it is primarily genetics, my reasoning is how come John with spread and a G10 is doing so well four and half years after diagnosis, on an old hormone treatment too. I reckon it's having a dad who lived until 91 and having inherited pretty good genes. I'm not saying the damn disease won't get him and I am enormously grateful that we caught it when we did, who knows if a few more months would have made a difference, untreated.

John is quite slim, but has always eaten a varied diet, with nothing restricted although he rarely drinks alcohol (not so when he was young, but he was never a massive drinker). Anyway, I always said to him that his genes would help him and I firmly believe they have.

Lots of love

Allison

User
Posted 09 Jun 2015 at 01:27

<<hugs>>

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jun 2015 at 11:02

Lots of love and hugs, Julie. My collie pup, Zanzi, is now just over five months, a real little thug. Wish you hours of fun and chaos with the new bullie !

 

Fiona xx

User
Posted 09 Jun 2015 at 13:03
SS

let me see brave, bad, ugly Hmmmm

Tulip does not entirely look like her name, I doubt she smells like it and I don't think she is dutch so now I am trying to decide why Tulip? will have to think about that one.

The boys broke your computer being typical boys and scrapping indoors I believe, so endless house chores seems a reasonable way to repy the debt. If you really need to have them temporarily fostered you can send them to me anytime! Best to check I m at home first though!

User
Posted 09 Jun 2015 at 13:31
Sorry SS got cut off in mid flow there (story of our lives?!)

Creatanine increase may just be down to the fact that Trevor has been so much more active the last few months. More muscle usage = more Creatanine as a by product and if his Kidneys are a bit iffy they probably can't process it that well. I am not sure why Zometa would be reduced probably to give the kidneys less by products to deal with so they can cope with the Creatanine better.

Still trying to think why Tulip, and I have decided it is just that it is a cheery little name for what I hope is a cheery little dog.

will phone this week

xxx

Mo

User
Posted 23 Jun 2015 at 07:02

Morning Julie, just to say I am sorry for the loss of the puppies.
That must be very hard work, especially as you not only have the physical aspect of night time feeds but also the worry that the little chap might not make it.
Fingers crossed for you
Best Wishes also to Trevor. Hope he gets more comfortable soon
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 23 Jun 2015 at 13:19

Sorry to hear of the puppies but know the surviving one has a good chance in your care.

Fingers crossed for Trevor next appointment..He is also in good hands.

Weather ....well it is 35 degrees here and the sun is shining...just having some time out in the shade and thought I'd look in on my friends

Bri

User
Posted 23 Jun 2015 at 14:02
Julie

SS

you know I am sad about the puppies and have fingers xd for solo survivor.

George and I do not x and tell so I will not spill on what happened when I went to see his etchings... pole dancing was postponed until I am the same size as Lyn Eyre either that or we have to swap roles next year.

I will be home before your wiz viz

So we can catch up properly then

Xx

Mo

User
Posted 23 Jun 2015 at 19:42
Oh Julie

That's so sad about the puppies, I can only hope that your kind ministrations will keep the little one going until he starts to thrive.

Always going to be concerned about Onco visits, especially when symptoms seem to be worsening, fingers crossed it is down to the extra work T is doing now he is off the horrible bicalutimide.

Lots of love

Allison xxx

User
Posted 23 Jun 2015 at 21:15

I am sorry to hear about your puppies Julie.

Hoping you are all okay.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 04 Jul 2015 at 08:19

Congratulations Mr and Mrs B.

Love the new avatar, you could be a model posing there!

Sorry to hear about the last little puppy, it must be very hard to have that happen, even financials aside.

Hope you have more success with the next brood

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 04 Jul 2015 at 08:20

Congratulations to the new Mrs Boothe.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 04 Jul 2015 at 09:32
OMG Julie you wild dragon you ...love the photo. Initials JTB would not be that bad, could have been worse like JCB ha ha.

Many congratulations I am really happy that you have finally tied the knot so to speak. You know what my thinking was all along.

Julie Boothe sounds kind of cool.

Love you SS

When do we get to party?

Xxx

Mo

User
Posted 04 Jul 2015 at 10:59

Waaaaaaa - this is so exciting. Loads of love and congratulations to you both ❤️👰⛪️

Very sad about the puppy though and guess that means you won't be having an all expenses paid Caribbean honeymoon

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Jul 2015 at 11:03
Congratulations to you both

love the new avatar

Best wishes for Monday

Carol x

User
Posted 04 Jul 2015 at 19:08
Hi Julie,

That's really wonderful news.

Congratulations to you both. Enjoy your weekend.

Steve x

User
Posted 05 Jul 2015 at 13:14

CONGRATULATIONS  MR & MRS BOOTH!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

 

 

 

Hi Julie,

 

So Mo says you've married your 'Turmeric Prince'?

You should change your signature here to 'NEVER LAUGH AT A TURMERIC DRAGON'http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I would never let a day go by without my five spoonfuls of turmeric in my veg drink. It's magic stuff!

 

So sorry we didn't get to see you at The Mill, and I'm deeply saddened about the loss of your puppy.

May life bring you more happy moments than sad from now on.

 

And please keep the banter going between you and Mo. You two have had me in stitches here so many times.

I see Mo has announced she's now an avid bird watcher. Aren't theses folks nicknamed 'Twitchers'?

I wonder if she found her new hobby while on the bike ride?

If I'd experienced a 'Perineum Crunch' like she did, I'd be twitching too - for months!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

All the very best,

 

 

George

 

 

User
Posted 05 Jul 2015 at 16:28

Lovely post and married, brilliant! I love the avatar too. Hope you had a great celebration and the blood tests go ok when the results come.

User
Posted 05 Jul 2015 at 16:50

Congratulations to you both...

I also read you don't drink Julie..erm I think I may just mention the Wurzels

Take care

Bri xx

User
Posted 05 Jul 2015 at 19:13
Well congratulations Mrs B ,you are a dark horse

Best pack away my big hat , agree with Mo when's the party

Good luck tomorrow

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 06 Jul 2015 at 13:04

Many congrats from me, Blossom, Storm and pup, Zanzi ! Love the avatar !

Fiona. x

User
Posted 06 Jul 2015 at 17:26

After a very busy week, I am trying to catch up. Many congrats to the 2 of you!

Paul

Stay Calm And Carry On.
User
Posted 06 Jul 2015 at 22:49

Scores on the doors, up to 137.5 so pretty much what I had guestimated in my sane hours. Although no where near the figure that my mind had run riot with. So yes a pretty big rise and although for some this would be a change of underpants time the Wiz who has nerves of steel pointed out we are still not at doubling point as last score 6 weeks ago was 85. So basically Abbi still in the back pocket next psa test in 4 weeks and next Onco visit in 8 weeks that is on the assumption that we don't have a huge jump at the 4 week test.

I have not only warmed to the Wiz over our 2 year relationship but I know think she is pretty smart. It makes such a difference to have confidence in your Wiz her thinking is that even though Trevor's starting psa was sky high it was and I say was not as aggressive as a low psa with the same spread. She thinks his body gives of a lot of psa and his disease had been there for a long time. Coupled with his brilliant response to Bicalutamide she also thinks he will have the same response to Abbi but herein lies the problem choosing the right time to start. Also with his heart problems it's a huge gamble so the longer we can put it off the better.  We live to fight another day.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

BFN

Julie X

 

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Jul 2015 at 23:08

Julie, I am so pleased to read this - not the perfect set of results but fair to middling I guess xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2015 at 19:42
julie SS

how I missed this post I don't know, maybe so caught up in your other news I just did not see it. I am sure others haven't either.

I know there have been one or two of our regular posters who have been having difficulty logging in just like you it seems to be cured by shutting down and going back into the main PCUK site so I am thinking there is some sort of bug in the cached info I will message the forum IT whizz and let him know.

Talking of Whizz, Wiz etc. The news on T's PSA is not the best ever for you but I am just thinking of something Jamie said at Leicester about PSA at diagnosis. He suggested that this is often a kind of benchmark and an indication for the Onco of what is happening with cancer activity. If that logic holds good your wiz is possibly thinking that a score of 137.5 is actually pretty good in the circumstances.

I Know the lovely Mr B always said to us that in advanced PCa the PSA is just a number and how a patient feels and how good the quality of life is was more important.

Anyway as you say T seems to be handling Bicultamide well and you still have more things to try so whilst things are relatively stable and T is doing well make hay while the sun shines.

xxx

Loads of hugs

Mo

User
Posted 08 Jul 2015 at 19:54

bit late

but congrats from me

must be the north south h time lag

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 08 Jul 2015 at 21:16

So Pleased Julie, i missed this as well, i rang Mo today to find out how Trevor got on.

Hope to catch up with you all over the summer holidays, still not told the girls about the puppies http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

So my low psa is worse than trevor high psa http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif Bring it on !!

Love from us all xx

 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Jul 2015 at 21:18
Oh wow, I've been absent due to family visitors (BIL/SIL over from Sweden for a fortnight). Many congratulations to you both, what a wonderful post, I expect the boys were over the moon. So sorry about the pup, such a shame, poor little mite.

I think it is true about the PSA being relative, we have been told that from the start, why is it that someone like John has a PSA of 25 and spread (guess the G10 is the cause of that)? Whilst men with PSA of over 100 can have no spread. Maybe it is the G score element that counts in these cases.

Either way, I'm just thrilled to bits for you both

Love

Allison xxx

User
Posted 09 Jul 2015 at 00:26

Nope this post didn't seem.to crop up at the time.
Main thing us how are you and Trevor doing? Newly married couple, perhaps I shouldn't ask ;-)

I think Alison is right, it's just a number.

Hope you both enjoying the summer

Bri xx

User
Posted 08 Sep 2015 at 17:33

Good to hear from you Julie although it's a shame the news isn't better

Chin up girl.

Good luck with this lot of puppies

We can't control the winds - but we can adjust our sails
User
Posted 08 Sep 2015 at 18:43

Hi Julie,

So you are having some "normal" time http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif for those of you that have never met Julie believe me there is no such thing as normal.

So book us in, girls for the puppies and me for the conservatory for a beer.

Results not brilliant but you now have Abbi, you know how much i rate this drug, i have put i link from Gerry Potter who developed Abbi worth a read about reducing the dose, worked for me but don't tell Jamie.

Let me know when your free, hope the boys enjoyed being back at school.

Love from us all

 

Si xx

 

  http://prostatecancerinfolink.net/2012/02/06/long-term-use-of-abiraterone-acetate-at-250-mgd-is-this-really-viable/

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Sep 2015 at 19:29
Hi Julie

Don't think I have ever commented on your thread before, but I am one of these people who reads many threads and laughs and cries quietly with everyone at what I read.

I'm glad you have had a nice summer of being "normal", I appreciate it is lovely to put cancer to the back of our minds to give us a break from the stress of worrying

Bob had about 12 months on abireterone and responded well, and without too many side effects, just tiredness. Though I do appreciate your concern with his heart proB's.

Julie you are a truly inspirational lady and I wish you and your hubby al the best with your next treatment.

Love Lesley xx

User
Posted 08 Sep 2015 at 20:06

Hi Julie

Agree with Si on the normal comment.

The results aren't what you wanted but maybe not totally unexpected either.
Now get rid of the pessimist streak....There are weapons in the armoury and more summers of fun and frolic to be had....did I just say that lol

Sounds like you are gonna be busy with them pups though

Take care
Bri

User
Posted 08 Sep 2015 at 22:07
Hi Julie

been a long time since you have posted I can understand your reasons.

Sorry to hear that treatment has moved on .

Both Eric and Trevor with the heart problems treatment isn't the sa me path that others are given.Im glad that they won't give Trevor chemo in Scotland you have to before abbi worst thing for Eric with heart condition.I hope abbi works for him with no side affects.

You are both in my thoughts.

Best Wishes to you both

Carol x .

User
Posted 09 Sep 2015 at 02:39

Good to hear from you Julie and thanks for the mention. I am feeling ok at the moment after the scares of early summer but life is changing for me and when it has I shall reveal all on here. Your silence now proves to be wonderful news as you have enjoyed a great summer. The results are never what we want and Trevor has moved on to that next stage causing worry as you and he adjust to the new drug regime. I would label this your 'new normal' and embrace it for as long as it works. We all know that having bone met spread means that we will continue on this uneven and unwanted journey. It happens and we have to re define how we think about the world around us. I went through this in the summer when I had such pain with bone spread in my legs I thought I would be moving to my new normal and it has created changes in my thinking and my actions. But we never forget TopGun's wonderful phrase Life is for Living. For how long none of us can be certain but I know you and Trevor will embrace it whatever happens.

I do hope Abby tabs are a great success and further reports talk of Trevor,s resilience. Good luck on this next stage of this journey.

User
Posted 09 Sep 2015 at 02:43
Hi Julie,

I just wanted to welcome you back and say how sorry I am that Trevor's results weren't what you have hoped for. Please give him my very best wishes. Hopefully starting on the Abby tabs will help him in the coming months.

Thinking of you both.

Steve x

User
Posted 09 Sep 2015 at 05:41

hi
just wanted to put in my two penneth
like most of you am on other sites one of the guys been on stampede with abriaterone I assume this iwhat you talking about, well his resuls are awesome, hotspots have gone just a bit of increase in his spine, hope and pray this is what you are talking about and that if it is you get the same results
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 09 Sep 2015 at 11:11
Julie my SS

I know this summer has been a welcome time of normality for you all, I have been lucky to share some of those moments with you.

The next few months will be a difficult time as you wait to see what happens with the new drugs.

Having the conservatory finished will give you space and a little sanctuary.

You have such a wonderful humour and you are stoical rather than pessimistic in my view. Lyn says it perfectly.

Know how much you are loved because it helps believe me.

I am booking myself in for a closer inspection of the new visitor reception facilities at your gaff in a week or so. I will be ready to have Cruella de V greet me with 40 or so of the 101 !!!

Tell T and the boys if they are good I will bring a Tumeric spice cake and the new 5* flapjacks..Si can explain when he sees you.

Love you loads

Xxxxxxxxxxxxxxxxxxxxxx xxx

Mo

User
Posted 09 Sep 2015 at 20:33
Hello Julie

Well not the results anyone would want. Let's hope the Abby Tabs work their magic. My friend's hubby did very well on them for nearly two years and he had had a few heart attacks previously. Close monitoring and changing the steroid helped him a lot.

I, too have been mostly absent, just enjoying life and counting my innumerable blessings this summer. We had a holiday abroad for the first time for ages and despite a few touch and go moments re the loo visits, and a fantastic new bladder drug which helped a million, we went and had a great time. Our latest visit to the Onco shows a rise too but from 2.3 to 3 so no change this time in treatment, so we carry on with our normality too. Mind you we saw the head Wizz, who was new and wanted to see John as his G10 and nearly 5 years on and well (you know what I mean, well for cancer!), John's a legend at our hospital. We also saw a urologist who said he felt that we were friends not patients, all in all our confidence in our medics is through the roof. What a difference it makes Julie.

I'm so glad you have trillions of pups on the way, fingers crossed for better on that front, I can't imagine how wonderful it is to have the patter of all those tiny paws around, just gorgeous.

Sending you loads of love and all the best for the Abby tabs.

Lots of love

Allison xxx

User
Posted 22 Sep 2015 at 16:27

Hi Julie,

I'm so sorry to hear that news.  I hope the Abbi tablets start to work better.

Thinking of you.

Steve x

User
Posted 22 Sep 2015 at 16:36

So sorry to hear about this setback. You would have hoped for an early win with Abby tabs hope they get their act together pretty soon and do some damage to that PSA.

User
Posted 22 Sep 2015 at 17:30
Hi Julie

Not brilliant news but around 10% of men experience a PSA flare when they first start and in Trevor's world a rise of 100 is a tiny flare

Are you around the next couple of weekends for a visit

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Sep 2015 at 18:11
Julie my lovely SS

Not the news you wanted on the PSA front, I can only assume from Trevor's comment about his bones that his ALP or something else has come down a bit he is never the most specific is he?!

Si has a point the PSA up 100 since the start of Abi in Trevor's journey is a teeny weeny flare and even at 351 that is 350% better than it once was. As I said in my PM Abi can take 3 - 5 weeks to get going so try not to worry too much just now. I do hope the puppy front calms down sufficiently for you to go with him next visit to the Whiz.

xxxxxxxxxxxxxxxxxxxxxxxxxx

Mo

User
Posted 22 Sep 2015 at 19:28
Hi Julie

Really hope this is a flare and those abbi tabs start to kick in

Bri x

User
Posted 22 Sep 2015 at 19:40

Not such good news Julie.

Fingers crossed that Trevor is one of Si's 10%

We can't control the winds - but we can adjust our sails
User
Posted 23 Sep 2015 at 05:12

hi julie

cant offer much advice but from what I have just read the folk on here have come up with some good advice already

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 23 Sep 2015 at 14:19
Hi Julie

My fingers are so crossed for you both that the next psa reading is lower. Sounds like it may be early days, don't give up hope.

Take care, Lesley xx

User
Posted 23 Sep 2015 at 23:09

Sorry to read your latest blurb Julie, take heart dear girl, you are both still in our prayers as are several others.

xxxxxxxxxxxxxxxxxxxxxx

Chris.


PS, keep looking at the HUG !

User
Posted 25 Sep 2015 at 00:04
Julie

you are all googled out?, that is a bit like being puppy maxed to Cruella de Ville !!

We thirst for knowledge but then hate what we read, we try to compartmentalise issues that actually belong in half a dozen different places and most of all we rationalise, for there always has to be an answer, not always the one we want to hear but that is our new world. Joy, sorrow, fear etc. all of those emotions we all can deal with on a one off basis but now we multi task on emotions, each day can be different but we deal with it. That is what we do and that is what friends are for ...will call you this weekend

xxxxxxxxxxxxx

Mo

User
Posted 25 Sep 2015 at 00:46

I never google - mainly because I wouldn't trust the information that pops up. It makes my world a happy place most of the time :-)

Julie, I worry that you are over-tired with too much on your plate. What if anything can I do to help?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Sep 2015 at 01:05
Hi Julie,

Just to let you know I'm thinking of you both and while I was in church this afternoon I prayed that things would get better for you and that Trevor's condition would improve.

Steve x

User
Posted 25 Sep 2015 at 08:39

You're right Julie.
We do all google, well I certainly do, but it's how I cope.

Thinking of you anyway

We can't control the winds - but we can adjust our sails
User
Posted 25 Sep 2015 at 11:59
Paul

I think Julie and I (as well as many others) will really look forward to your post retirement writings, even when you are being serious you write with such a wickedly dark sense of humour.

Julie I also worry that you have got so much to deal with right now. If the puppies have not all gone by the time I get back I can puppysit a handful of them? Or if you ever wanted to just get away for a few days or so I will come and feed the boys and puppysit too.

Just how do you remember which puppy is which? I think I would have to tag them all or use henna dye to put little spots on them or something.

xxxxxxxxxxxxxxxxxxx

Mo

User
Posted 25 Sep 2015 at 13:59
hello Julie

Edited by member 28 Sep 2015 at 00:05  | Reason: Not specified

User
Posted 25 Sep 2015 at 15:48

Hi Julie,

Me and two girls ready for doggy duty tomorrow, if i don't hear from you then we will be on our wayhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif but you might be busy http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

You have loads of support here Julie, take it

Carol, you have given me he be jeebies   extensive mets and PSA undetectable http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 25 Sep 2015 at 19:48
Oh Julie

I haven't been here for a while, I was in a temper because I posted a bit of a long one and it seems to have got lost, so slammed the door on way out and sulked for a week. I didn't remember about Abby tab and the initial flare in some men so it could easily be that my dear friend, as already said by your wonderful support team here. It gets increasingly tough to be positive as time goes on with this disease, but you have got two lovely boys and puppies galore to pull you in all directions, many that's a good thing really, but I think maybe it is best to be positive unless and until you know differently. Your Trevor is a remarkable man, let's hope it was the ALP that was down, it's probably the only thing that makes sense.

Big hugs from Swindon xxxxx

User
Posted 26 Sep 2015 at 20:26

So love you Guys, so what can you all do to help well I have divided them all up . This is in no particular order. They are all parcelled up and on the delivery truck.

Lyn you have 7 puppies and 4 adults (I know you can cope)

Paul because you have the problem with your leg 2 adults and 2 puppies (loved your reply eloquent as ever)

Allison a genuine dog lover 7 puppies and 3 adults (you can do it)

Si you and the girls will be such a team 8 puppies and 2 adults (of course I will add some Antihistamines for Ness)

SS thanks for the offer but they can't deliver to the US

Fiona 2 puppies and 1 adult you already have lots to deal with.

Bri I know you didn't actually offer but from the FB pics I can see you are a dog lover so 4 puppies and 2 adults

Guys you can get vet bedding from Kingstown Kennels at a reasonable price , the cheapest wormer is at Pets at Home, you will all need cages and pens (it would be tooooooooooo crazy without) .  You will all have to contact each other by PM for puppy buyers as to what colours and sexes are available but compared to puppy poop that's a doddle.

I am booked to leave on Mon for the Carribean  you can contact me via Skype but I have heard the connection is a bit ropy deliverys will be anytime from 5 am and midday on Mon.

Have fun.

Ps don't get them wet (they multiply when they are wet)

BFN

Julie Xhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Sep 2015 at 20:49

On second thoughts do you have a justgiving page - I will just send you some money for doggy condoms

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Sep 2015 at 22:43

Send me the dogs Julie as for some reason I've just lost all interest in my other passion in life....let you work out what that is lol

Bri xx

User
Posted 26 Sep 2015 at 23:27

To have a dog or not have a dog
That is the question
No is the answer!

My lease does not allow me to have dogs, so sorry Julie otherwise I would not have been tempted! Send mine on to Brian as he lives nearby shame to take them back and he can form them into a rugby team to take on Australia next weekend. They could do not worse! Night all!

User
Posted 27 Sep 2015 at 01:29
Sorry to hear that Trevor appears to be in the mire again, my thoughts, prayers and hopes are with you, Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 27 Sep 2015 at 12:20
Wot no puppies or dogs for me ? OK I am good with that I will share the children with Lyn, we are both very good at scaring people !!!

xxx

Mo

User
Posted 27 Sep 2015 at 23:11
Hi Julie

My god Julie, I can't believe how many puppies you have!! I wouldn't know the first thing to do with 1 pup let alone 8!!

I understand kids much better but I see lyn and mo are sharing the children.

What I have noticed and I am really surprised nobody else has picked up on this and commented!!! Never mind the kids and the pups, I am offering something better, I will come to the carribean with you as a good companion!!!lol.

Big hug to you, take care.

Lesley xx

User
Posted 28 Sep 2015 at 20:38
Tell you what Julie, you take my miserable old Jack Russell with you and I'll take the pups. It's a fair exchange I reckon.
User
Posted 10 Oct 2015 at 22:14

 

OH Dear well firstly I would like to bring up the Thank you tradition I don't think all though I can not remember if we had this on the OLD FORUM I know we had the how many were reading which was brilliant BRING IT BACK THATS WHAT I SAY.  Anyway back to the thanks I have to say this gives me sleepless nights the what if scenario (DID I forget or miss someone , maybe I forgot to THANK someone)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif So just in case anyone has been missed I THANK YOU.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif IS THERE AN AUTOMATIC THANKS BUTTON THAT I AM MISSING? because that would make life easier. A one press thanks all tab.

I am always impressed how people thank so quickly on FB if a little suspicious of course if there is a quick thanks button then my next question would be BUT ARE THEY GENUINE ? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif 

So what has been happening in the J T household well puppies are growing rapidly and the poop Factor has hit an all time high . I am wading through it with a little help from the boys. 4 bin bags  a day http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif It is not pleasant sorry to dispel the picture of sweet puppies but what goes in must come out.

Conservatory  is up and WAS FAB, until a slight accident with the famous RIDE ON and a stone (that ride on has a lot to answer for)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif so one WHOLE panel smashed , in the words of ME when Trevor looked like he was about to have another Cardiac Arrest (It's only glass don't panic).

So anyway enough waffle where are we today well PSA down (not quite a YAY moment but as Lyn would say a drop is a drop) 231 down from 254 . So are the beans magic (not yet but for ever hopeful ) all other bloods good .

So for anyone that replies a HUGE THANKYOU just in case I forget to give you a thumbs up.

BFN

Julie X

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Oct 2015 at 22:21

A drop is a drop..
Good news Julie and no thank you needed ;-)

Bri xx

User
Posted 10 Oct 2015 at 23:09

Yes, great news. those beans are magic!!!!

while we are on the subject my puppies have still not turned up girls are devastatedhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

Love to you all xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 11 Oct 2015 at 02:58

Hi Julie,

I'm really pleased that Trevor's PSA has fallen, it's at least heading in the right direction.

Your puppies must be fantastic, even thought having so many around, does create the problem you mentioned.  It doesn't bother me but does my wife. I love dogs and have only ever had Dalmatians, but our last one died 16 years ago and my wife won't let me have another one, partly due to the poo problem and the fact that Dalmatians do loose their hair a lot.

I really miss having a dog, they always forgive and accept you as you are. There is no greater friend in life, but now would be the wrong time to consider getting another one, even if I was allowed.  It's making me feel sad thinking about it.

Take care and send my Best Wishes to Trevor.

Steve x

User
Posted 11 Oct 2015 at 05:53

Glad there's been a drop Julie not matter how small.

What is it Tesco says - oh yeah! Every little helps!!

Good luck with the poop makers !

We can't control the winds - but we can adjust our sails
User
Posted 11 Oct 2015 at 08:29

All best wishes from us both Julie
Chris and El

If life gives you lemons , then make lemonade

User
Posted 11 Oct 2015 at 10:08

So glad to hear your news, Julie. The pup Zanzi says Hi to your lot ! x

 

Fiona.

User
Posted 20 Oct 2015 at 09:24

I have reported the Placidway post and would ask the moderators to remove them from membership. Disappointing that they got through the system anyway but to choose the thread of a terminal man shows either crassness or a lack of knowledge & understanding of the subject .... neither of which would encourage me to use their services if I ever wanted to travel abroad for treatment :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Nov 2015 at 06:48
Thinking about you and doin all the rootin I can, kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 01 Dec 2015 at 22:17

Oh Dear just had a huge row with Siri and now we are not talking.

Conversation went like this.

Hello Siri - What happened to my smiley faces?

Siri- What Faces

Me - On the PCUK Forum , I put smiley faces

Siri- I added the faces

Me- There was no smiley faces added

Siri- Oh yes there was

Me- Oh No there wasn't

Siri- Are you arguing with me

Me - Absolutly Frigging right I am

Siri- I don't understand Frigging

Me - Frigging as in really cheesed offhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Siri- Sorry I didn't understand that , would you like me to call home.

Me - No I am home

Siri- What are smilies http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Me - Are you trying to wind me up .

Siri- YES

Me - You are really getting on my tits know.

Siri Is there a smiley for that.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Me - That's it I am switching you off.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Siri- Hmm just try it, you won't be able to do it without a teenagerhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Dec 2015 at 22:33
Hilarious, me no Siri don't talk at all, no siree. we don't understand each other, my West Country burr simply isn't understood. Ah well.
User
Posted 30 Dec 2015 at 22:43
Scores on the doors up again PSA now at 566 , the Wiz is still holding steady and we continue on with Abbi for another 2 weeks. I have given up hope of the big drop that some have seen on the magic beans. The positive that I am taking from this slow but relentless rise is that just maybe it is stopping it from sky rocketing away. So to be honest the Wiz is doing exactly what she promised two and a half years ago , she said I can't cure you but I can buy you time.

Two and a half years ago I didn't think we would see Xmas 2013 and here we are on the Eve of 2016 so for all of those with a dire diagnosis never give up hope keep going forward with everything that you have. Our road has been rocky there has been a fair few boulders along the way but the extra time that we have had with the various drugs that T has had is priceless.

He hasn't been so good the last few weeks just more tired and a bit more pain but certainly able to unwrap his Xmas pressies , he forced himself to polish of a bottle of wine and half a bottle of Baileys(not bad ehhh)!

I would just like to wish each and every one of you the very best for 2016 Happy New year to you all my cyber friends long may we all continue to support each other.

Getting a bit tearie know so I am off

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Jan 2016 at 23:39
SS you so nailed that with your post I feel like we have screeched around so many corners , skidded and slidded and each time we have somehow not sure how managed to get to the home run safe ready to fight another day.

So Ok now there is only 3wheels left on the wagon with a 300 point increase in PSA since starting Abbi in Sept, but in the words of the song (lots of you might not no the tune so Google 3 wheels on my wagon)

Here we go for those that haven't been on the forum very long I make no apologise for my sense of humour😮 I do like a sing song.

Three wheels on our wagon

And we're still rolling along

That PCa is chasing me

But I'm singing a happy song

I'm singing Higgity,haggity,hoggity Hi

Pioneers they never say die

A mile up the road there's a hidden cave

And we can watch PCa go galloping by

The words of this song just sort of encapsulated our journey of course ( if you google it ) it does go down to no wheels on our wagon but we are not there yet so my friends Higgity, Haggity, Hoggarty HI. Keep rolling along.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Jan 2016 at 20:50

Paul, you are such a kind and true person, never be frightened of coping without a partner. If I ever thought you needed me, your family would have to take out a restraining order to keep me away.

Julie, I wish I knew the tune, just so I could hum along with you

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jan 2016 at 20:58

Sorry to read this Julie. X

We can't control the winds - but we can adjust our sails
User
Posted 30 Jan 2016 at 23:44

I just checked - Mark had chemo and then tried Cabz not radium :-( It has also dawned on me that your Wiz may not be the same person as his Wiz ... all these years I have just assumed you were under the same person!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jan 2016 at 17:51
OK detective Mo

What gave it away

Carol

Was it the bad grammar

Edited by member 31 Jan 2016 at 18:01  | Reason: Not specified

User
Posted 23 Feb 2016 at 00:20
So here we go Wiz visit tomorrow, bone scan completed last week we are just hoping that the results will be back ready for our appointment in the morning. MRI is on the 28th so we wil have to wait for those results.

So ABbi to continue ? or ABbi to stop it is like the sword of Damocles hanging over our heads.

I say we on this ,Trevor remains non comital , non talkative, and honestly still can't cope with any discussion about his disease. I get it I so totally understand , although it took a long time for me to accept where he is coming from. We are all differnt beings and how we cope is unique.

It is his disease and he owns it , where does that leave me well that is a whole different story. That is where you guys come in. 😥

Wish us luck and keep fingers crossed, who knows the bone scans may show no progression and we will hang on in there by a wing and a prayer, we have skidded around so many corners before. It is just another corner right?.

Life with PCa it sure is a roller coaster at the moment we are on a dip (for those that remember the rocky road) I feel we have a few boulders coming up. It would seem that radium 223 is not going to be on offer but I will update on that.

I

Our DIY goes on abated, Trevor is too ill and I am too old but we are trying the best we can, to be honest we both know that there is a sense of urgency to get things sorted . Where is DIY SOS when you need them .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Feb 2016 at 09:13
So not good news but to be honest it was what I expected there is significant progression in the bones the Wiz showed me the scans (Trevor didn't want to look) . Trevor had a few tears and then quickly pulled himself back together. To say everybody's mood was somber would be an understatement.

All of his torso on the scan is affected, so numerous new sights and worsening of the original ones.

No plan B for the moment she wants to wait for the results of the CT scan (this Sunday) next visit is 21st March and she will decide what to do then. We carry on with Abbi until then , but we all agreed that it is not working .

She wouldn't comment on Raduim 223 she said she wants the results of Sunday's scan first.

Bugger this tishy disease I would like to say worse but I will probably be moderated.

That sick feeling in the pit of my stomach is back with a vengeance.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Feb 2016 at 23:54

Oh my - these are going to be a tough few days. It looks bad Julie but really this is a small setback when you compare it to the blue light times. You have done brilliantly so far and you have already survived bigger knocks than this so you will find the strength to do it again, for T and for the boys.

The only thing we can do is hold you up and keep reminding you how important it is that you get some respite sometimes - a break from the constant state of high alert.

As a starter, I have posted a picture on your FB - your T should have been a premier league footballer apparently!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Mar 2016 at 22:39

Ah Julie,

I'm very very pleased that Mr Ratty got his comeuppance. Poor Old Yodie, but I'm sure he has been well cared for

As for the rest, what can any of us say apart from the usual "I'm thinking of you"

Big hugs

PS. I'm not generally known as a touchy feely person (it was the way we were brought up) and I've had to get used to the greeting and goodbye kiss but since I've been a member of this site I have never felt the need more to hug people to show I care.

Odd isn't it

Edited by member 21 Mar 2016 at 22:41  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 21 Mar 2016 at 23:01

This is one situation where I can honestly say that I understand. I really do take my hat off to you for your positivity and sense of humour whatever the circumstances. Your Trevor is a lucky man.

The rat bit is disgusting though - I've never much liked them. I was a bit worried about your spag bol though - in the words of Monty Python I hope there wasn't a little bit of rat in it?

Thinking of you both

Rosy x

User
Posted 22 Mar 2016 at 23:05

One soggy and gin soaked comfort blanket on it's way to you now!

Rosy x

User
Posted 25 Mar 2016 at 21:50
Hello Julie

Sent you a post a few days ago thought it was moderated as I haven't posted much under wee wifie2 obviously not think I am hanging around with Mum to much (Alzheimer's) must be catching.

I haven't posted for a while since my conversation about Trevor not to take chemo it was just Eric shouldn't of had chemo with his heart and lung problems but the only way was to take low dose chemo before abbi (Scottish Law).If you remember the hugs you used to send up on the train now its my turn to send them on the first train to you and Trevor.

Eric's PSA dropped whilst on chemo but like TG was still spreading also it never made one bit of difference to his pain.My heart goes out to you all.

I'm sure the Wiz has something else for Trevor.You both have given this disease a run and long may it continue as I know you will

Wish I lived near so that I could give you a big hug and not a virtual one.

Sending my best wishes on the first train.

Carol xxxx

User
Posted 26 Mar 2016 at 22:48
Thank you ALL for replies,

When the chips are down it realy helps to hear your voices.

This is a bit of a warts an all moment so for any body sqeumish look away know.

Carol thank you for your post so many on here want to give a positive but your comment about Eric just about summed up my feelings. I try and stay positive for others on here but you told it like it is and I am grateful for that. I would rather hear the worst case scenario and work back wards.

I hope that life is getting easier for you and you are going forward in life. I hear that reduced train fares are in your area 😃

Trevor dying is something we have lived with for such a long time, from way back with the first heart attack it has been a constant state of high alert and I have to tell you it is exhausting , we have lurched from one emergency to the next.

So many people comment on how well he looks and how well he has done (both of those comments are so true) he looks on the outside as if nothing is wrong. The truth is far from that.

He has defied all expectations and must be made of some strange either plant material or some intergaltic slightly Jamaican , slightly Scottish hy-brid. I am not sure with his ancestry is true.

Sandra your comment about our boys has been the one that has weighed heaviest on my heart, in all of this crazy mess , To be totally honest my scariest moments and worst nightmares are for my boys. When Trevor dies they will still be children, I don't mean to belittle the so many on here that have children of any age, ( they are always our children no matter there age).

The boys are 16 and 11 , James has so stepped up to the plate and taken on so many jobs for me, he know drags in the 15kg sacks of dog food and helps with so much.

He is just about to take his exams and then is going onto take Chemistry, Physics, and maths ( he gets his brains from me).

Zack is realy still a baby at 11 he relies so much on his dad. Such a sweet boy they both understand what is going on but don't want to talk about it, why would they children live in the moment , childhood is wonderful it is a whole different world .

I am going to be totally honest and it is my boys ( I know most mums will understand what I am saying) that I have most worries for, you see they are the future, they will be the ones with the memories of what happened to there dad. Trying to help everyone through our next steps is such a heavy burden.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 27 Mar 2016 at 08:35

yep its strange how kids deal with the loss of a father, I recall my mam telling me when dad died I was only 8, my first thoughts where who would like my dads cloths

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 04 May 2016 at 22:50

Amazing - well done to the both of you! If sheer determination determined the progress of PC you'll still be posting on your 30th cancerversary.

How about getting up on the roof with Trevor and a bottle of bubbly to celebrate? But hang on to your skirt!

Rosy x 

User
Posted 05 May 2016 at 07:21

Many heart-felt congratulations to you and Trevor , nutty lady. You're an inspiration. You remind me of the funny ' friends ' episode where something really serious is happening and in Joey's head there is just a nah nah nah.
I don't like your new look very much , and has Trevor been hitting you again ........?
Bring back that utter vision in the blue dress x

If life gives you lemons , then make lemonade

User
Posted 07 May 2016 at 14:50
SS

oh my you are probably wondering if I have gone deep silent and utterly covert?

Not at all and I am shocked I missed your cancerversary but various things have kept me busy and actually unable to post on the forum (thank the Lord for that say some!) Happy 3rd and many more to come.

You and I have been through much together and I still cheer every time something good happens for you and Trevor.

I really think you should build a slide from the roof straight down to the seat of the ride on mower a sort of Wallace and Grommit invention. In fact I think Nick Park could do a lot worse than to make a W&G film based on your crazy life using your sense of humour for the script. It would be a real blockbuster.

I see Chris J is not such a fan of your Tulip picture complete with black eye, knowing what I know about that daft pooch I think he has a point, your swimsuit Belle certainly would have got Mick's vote (sorry Tulip)

You are an awesome Woman with an amazing family and a Tumeric Prince of a Husband with more resillience than a super bug.

Love you loads

xxx

Mo

User
Posted 09 May 2016 at 10:24
Good news best medicine humour that's how we dealt with Eric.

You and your skirts remember about 2yrs ago you were walking about with your skirt tucked in your nickers what a woman.

Sending you both best wishes and here's to many more good times.

Carol xx

User
Posted 12 May 2016 at 08:01

I thought Trevor might like this trend for turmeric latte! See link http://www.theguardian.com/lifeandstyle/2016/may/11/turmeric-latte-golden-milk-cult-following-alternative-coffee?utm_source=esp&utm_medium=Email&utm_campaign=GU+Today+main+NEW+H+categories&utm_term=171728&subid=7787429&CMP=EMCNEWEML6619I2

User
Posted 18 May 2016 at 10:52

The key part of what you say is the living part just like Topgun,s life is for living. The one thing we incurable sufferers have in common is that making the most of life is a must. We never know the timetable, can never know the timetable. So much better to keep going, enjoy every moment we can and yes the road is rocky as another old friend stated, but we will travel this together. Not great news but you will approach it as you always do with humour, optimism and fortitude, who can argue with that!

User
Posted 20 May 2016 at 18:43
Hi Julie

I still manage to get on every now and then. Work is manic

You have a great onco to still be on Abby is great news many oncos would have stopped it by now but yours is right on the money

Really hoping we can get across to see you soon maybe half term

Everyone here sends there love and the girls send there love to the dogs

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 03 Jun 2016 at 14:08
SS

now I kind of know Trevor a little bit by now, so I am guessing a wheelchair would be absolutely out of the question until really, really desperate (even one with go fast stripes, mirrors and flags like Topgun's scooter) So I have a cunning plan ....

Next time he has the bright idea of taking the lads to a race meeting or a similar grass slope type of event, of which I can list a few just in case you need help visualising ...

The Epsom Derby

rock concert at MK Bowl

party in the park

Wimbledon

Queen's garden party

OK so you are getting the scene now??

well that lovely tall nephew and your equally tall Eldest son, ably assisted by your less tall but equally gorgeous younger son, should load the ride on mower in the back of the van. Then T has his own transport at the event and can be useful all at the same time!!! When he goes to HRH's gaff he can take Tulip to grrrrr at the corgis xxxxxxxx

Love to all of you as always

xxxxx

Mo

User
Posted 14 Jun 2016 at 12:47
Hi Julie,

I'm really sorry if it seems I may have infringed on your thread with comments about my wife but it was not my intention to do so. I just wanted to say how worried I am about my wife's health issues. I'm not allowed to post anything about my wife on my own thread but it's difficult not to say anything at all. I hope you'll forgive me on this occasion.

Steve

User
Posted 14 Jun 2016 at 22:12
Julie my SS

given all that you know I think I would have taken those results and said that they were better than expected. Main thing is that T is feeling OK, mobile and retaining his love for Tumeric and food.

Having a sense of hunour and an ability to laugh at yourself is a gift that helps you to cope. Mick had it in bucket loads and I am certain it is what kept him going no matter what.

I do think that Tulip is a poser, she just looks like butter would not melt in her mouth!

Catch up soon

xxx

Mo

User
Posted 29 Jul 2016 at 08:31

I too am a Googler! In fact I am my extended family's Googler, well the older generation anyway.

Did I Google PC at the start. You betcha. Currently googling skin cancer since John has just been treated for Basal Cell and has had a biopsy on his arm.

I think we tend to warn those new members off who come across as panicky since Google can have too much information when you begin this journey and if you don't know what to check you check everything.

Hope Trevor is feeling better today

********

We can't control the winds - but we can adjust our sails
User
Posted 31 Jul 2016 at 23:15
Well it showed page 14 but didn't turn the page. Well will this one do it I wonder?
User
Posted 01 Aug 2016 at 21:55
SS

I think Rosy has summed up what we have always called our roller coaster ride perfectly. Best description ever. I think the one Mick and I got on was like that specsaver advert, not what we xpected, certainly not what we chose but once on board and that bar goes down there was no going back.

It's ironic Mick would never go on them when we were at our Condo in Florida saying he refused to put his life in the hands of a spotty high school kid. Im sure Mr B was once a spotty high school kid but he was a really good driver all things considered.

Your Onco is also a good driver so at least you are in great hands.

as for Googling I do it all the time. have since I first discovered it but I have learnt to pick around the answers and use a bit of logic and rationalise when I can. When the results of a 60+ poo test come back positive they give a list of about 20 things that can cause blood in the sample including as minor an issue as gums bleeding when brushing your teeth. Regular aspirin use is the Number 1 cause apparently. So its another case of trying to sit on those busy hands of yours and willing it to be nothing PCa related and nothing too serious.

Thinking of you though and saving my paper shredding in bin bags to bring as soon as I can. Almost done with paintbrushes, drills etc so hoping to come bearing those bin bags and also an emergency ration pack soon.

xxxxxxxxx

Mo

User
Posted 08 Aug 2016 at 23:24
Hi guys,

Update on T oncology and Wiz visit today I wasn't able able to go as it was a full day at the hospital he didn't get home until nearly 6pm. So the information has been a bit disjointed.

So here we go PSA at nearly 2000 the Wiz is saying another 4 weeks probably on Abbi then the switch to Raduim223, this will be at Addenbrooks as it can't be done at Peterborough that's a journey of just over an hour each way.

Trevor has had increasing back pain but he is certain it is just a pulled muscle and not related to the cancer I am am going to go with his interpretation he knows his body but that doesn't stop me worrying. How can that high a PSA not be causing pain?

One of the blood counts was lower than it should be but questioning Trevor on which one is like pulling teeth, apparently the wiz thinks it might be related to the rectal bleeding the count should be 120 and Trevor's was 89 any ideas guys?.

The afternoon was spent with investigations on the rectal bleeding nothing was found on the rectal exam so next steps are CT on bowel and stomach plus camera job, one strange thing found was he has developed a umbilical hernia .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Sep 2016 at 01:33

Ah lovey, this is not the best post I ever saw from you but not the worst either; there must be someone looking over your boys to get another happy summer all together. Now they will be back to school and the autumn will bring you who knows what challenges (hopefully a bit of a break from all the puppies for a while at least?) And the abby-tabby is clinging in there ... just! Perhaps you could ask them to stick the camera up the ride-on at the same time?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Sep 2016 at 08:14
SS

I know how much you worry about Trevor, when we were all there last week he was the most talkative I have ever known him to be, he ate well and looked as though he was moving about quite well. Definitely not as upright but his account of his bowel investigations was really funny. He did say he was not delighted at the prospect of a rear end camera shot. I almost suggested him watching the Billy Connelly u tube clip. He is such a fighter, maybe his dismissive attitude of the PCa serves to make him stronger!

Lyn makes, a great comment, another whole summer with the boys and all the family, 3 years ago you would never have thought that possible.

Radium 223 may make a big difference when it does get deployed and in the meantime Abbi keeps things at bay I think although I hope that was a typo on the PSA figure in your post.

Your boys are an absolute credit to you both, they have impeccable manners a quiet confidence and are thoroughly charming. You must be so proud of them.

You did look tired Julie and no wonder. Still gorgeous and witty, I wish I could get over more often. Somehow you need to make a bit of time for yourself too. Once Grace has had her puppies maybe a little break so you can slow down just a little bit?

See you soon and biggest hugs as always

Xxxx

Mo

User
Posted 13 Sep 2016 at 12:10

 

Dear Julie,

 

There you go again, having me splutter a mouthful of tea all over the place. Constipation is your friend?!

I bet we can't find that quote in any book.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Too funny!

 

Your Trevor is an amazing guy. Everything he's doing daily is incredible He refuses to have his routine spoiled despite the massive battle he's busy waging.

To sum up, you two are an incredible couple, and your posts are eagerly awaited by us all.

They bring inspiration to so many AND always a smile, whatever the news.

 

You're heroes to us, and long may you continue.

 

 

Warmest wishes,

 

 

George

User
Posted 05 Oct 2016 at 14:14
SS

YAY, YAY and thrice YAY

Reading this today has made me smile. So many dips in that rollercoaster but a nice slow gentle climb (with the brakes applied) is such a welcome relief for you all.

It will be very interesting to see what happens if T goes onto the combi treatment. Quite a few people with advanced PCa have reported that Abi seems to make things better in terms of wellbeing, mets etc. yet PSA stays level or rises. I believe it was the lovely Jamie that said Abi is only deemed as failing when 2 or more factors get worse. Adding R223 which of course works in a totally different way, may be just the solution to get T improving even more. I truly hope so.

Now, how come you didn't call me to tell me you were going to be left home alone ...I would have come over and made sure you rested, I would have done all your cooking and even stood in for you on poop patrol. I would have brought Prosecco and my slippers and slept in the Conservatory with my friend Grace.

Tut tut. If that is on the cards again you call me is that a deal SS ?!!!

Turmeric T rides again !

all my love

xxx

Mo

User
Posted 06 Oct 2016 at 08:14

Hi Julie

I am only posting to move your bloody page over http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Such great news so glad your onco is sticking with Abbi, brave lady

Hope to catch up with you before Christmas

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 06 Oct 2016 at 11:48
This page not found thing is REALLY ANNOYING ... I think I know why it happens, programming wise it should be an easy fix. I have sent another message to Sadie but doubt it will get resolved. Along with others I see no investment from PCUK to fix any of the frequently reported issues at all.

so Julie my SS forgive me while I play a childhood game

This little piggy said "identify deleted posts and clear the empty text lines"

This little piggy said "move the end of last post tabs"

This little piggy said "move the start of next post tabs"

This little piigy said "realign the end of page tabs"

And this little piggy said "renumber the pages that remain and Bob's your ydoolb Uncle!"

OK so that is my slippers and prosecco guide to bug fixing

Dah Dah

xxx

Mo

User
Posted 06 Oct 2016 at 11:49
sorry that Dah Dah didn't quite hit the spot but this one will

DAH DAH

Edited by member 06 Oct 2016 at 11:51  | Reason: Not specified

User
Posted 20 Oct 2016 at 22:00
Oh Guys just a little update and in the grand scheme of things not a Mahoosive problem but a problem none the less. I have never seen another post on here with this particular problem so if any one out there has heard of it or can give some advice I would love to here from you. Actually if you just want to send me a hug I would love to here from you. Not that I am desperate for hugs you understand.😜

Ok so Trevor has had quite a few abscesses in his gums over the last probably 10 months or so he has seen the dentist regularly and had oodles of Aunty Bs any way upshot is he has got Osteonecrosis of the Jaw caused by his Zometa infusions.

This is a side affect of the Zometa although I have to stress not a common one, they want to take all of his teeth out , actually need to take all of his teeth out , he has got extra bone growth in his gums that is loosening the teeth and allowing gaps to happen hence the abscesses.

The problem being it is not a good idea to take his teeth out while on Zometa and guidelines are a break in Zometa for at least 6 months prior to any dental treatment let alone every tooth extracted.

Trevor without Zometa would be a disaster so not really sure what will happen here.

Trevor is really low he has always been quite vain and I know with everything else he has faced this is not the end of the world but he has taken it really hard. I suppose it is just another ride on the roller coaster and we WILL weather this storm , but hey FFS (hope I get away with that one)

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Oct 2016 at 22:20
Marje,

How can I say thank you enough for replying after what you have just gone through.

Xxxxxxxxxxx

B

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Oct 2016 at 22:28

 

Oh Julie, I am so sorry to hear this about Trevor's latest (and so unfair) blow.

 

Who wouldn't be absolutely gutted to have to face this?

 

You can have a big warm, daft Geordie hug from me, and for Trevor, a big man hug, anytime. 

 

Bloody'ell, I'm stunned about this development.

 

Over the years I've seen hundreds of  guys here given Zometa.

Very many, and Allister was one of them, swore by it. They found it helped enormously.

Some did much better than others, but over all this time I have NEVER seen a post from anyone suffer Osteonecrosis of the jaw, even though it's always been listed as a scary side effect of the drug.

 

It's just not right that you have to go through all this now, after everything else.

 

 

Warmest wishes to you both,

 

 

George

 

 

 

User
Posted 02 Nov 2016 at 08:29

Great news Julie http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Jamie was trying to get me on 223 and Abbi i will be watching with interest

Tough call on stopping zometa i so need some dental work but its the same with Denosumab need to be off for 6 months.

if those mets keep shrinking i might need to look at dumping the fosters trial and jumping on board the turmeric trial instead.

Ness and the girls all send there love,

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Nov 2016 at 17:22
Julie my SS

Everything is under control by the sound of things. Well as much as it can be on a roller coaster!

Trevor has met reduction but higher PSA has he OD'D on turmeric????

Your 4th Xmas since diagnosis, WOW and last time I saw Trevor he was looking better than he did when I first met him!

I had a chance meeting up and coffee with Devonmaid today, 5 years plus for them. John is much improved following stent removal.

Great news about radium+ Abiraterone maybe they will bring that PSA back down.

Love to you and yours as always

Xxxxx

Mo

User
Posted 13 Nov 2016 at 13:31

Only just come accross this post. I was diagnosed with necrosis of the jaw back in 2013. I was just attending for a annual checkup. I was referred to the dental hospital where they promptly removed all my top teeth. And a set of dentures fitted. I have had very few problems since. The consultant who treated me was aware of all the treatment I was receiving at the time, including Zometa. I made her aware of the fact that Zometa is stopped in the case of Necrosis. She said 'we can wait 3-5 years for it to leave the system or we can proceed now and take a chance. I asked what she thought my Onco would say, her reply was 'don't tell him'. So we took a chance and 3 and a half years down the line I have had only one problem area. As a result of shrinking gum lines my jawbone was protruding through the gum. I was referred to a Professor at another hospital who's approach was to remove minimal bone and let it heal itself. I take 100mg of Doxycyline daily and have done for 3 years or so. I also still have my Zometa, Zoladex and of cause the Abby tab and steds. My psa is 3.2 , a nice drop for me after hovering around the 12-14 mark for a long time. Oh, and my Onco still doesn't know ! Bone scans show it as dental decay.

Nec Aspera Terrant

Difficulties Be Dammed

User
Posted 13 Nov 2016 at 18:56

Wow, like a voice from the Gods! Great post lfcuk

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Nov 2016 at 20:03
If*** thank you for your post it is much appreciated so little is known about it and I have been trying to find someone with first hand experience so again Thank you. It just shows why this forum is so brilliant.

Trevor has seen the specialist and as predicted they are very reluctant to remove all of his teeth, however some are now so loose that they have to come out . The plan at the moment is to remove those teeth that are about to fall out anyway he was started on long term antibiotics 2 weeks ago and Zometa was discontinued from 6th Nov. They are planning to go slowly for the moment and see how it heals before proceeding. Got to be honest though eating anything harder than soup is difficult for him.

I have tried copying and pasting your post to show the Wiz but wasn't very successful if any one has any tips they will be greatly received. 😉

If not I will have to take my iPad.😄

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Nov 2016 at 20:32
I would just like to thank a certain person for emailing me the post . I won't publicly name him but his name starts with S and ends with S he has been known to wear a cape every now and then and takes a pretty mean photo scan photo 😘

BFN X

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Dec 2016 at 21:47
So ok Lionel was certainly not dancing on the ceileing this morning but he was tiptowing around A&E at 11am . Upshot is it's probably not spcc but almost certainly tumours pressing somewhere .

I had to leave him in A&E to get back home , I feel like I am torn in two at the moment.

So urgent MRI has been ordered and referrals to the hospice for pain management. He has slept since getting home .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Dec 2016 at 14:20

The 'Myth of Pain Control' ?

 

I am so glad Lyn brought that up again.

For years now I've railed against against this practice of mythical pain relief administered by hospitals.

Why the hell do they think a few paracetamol tablets will bring instant relief?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

I too trust only in hospices to give the correct medication to take away terrible pain.

I've witnessed the total neglect of patients writhing in pain in a hospital bed, and my many experiences go back to 2000 when my mother died.

Nothing has changed in 16 yrs.

 

You really have to get very stroppy to get anything done, and it should never be like this.

My 87 yr old mother-in -law as just been in hospital for 7 weeks after breaking her femur, and although given good pain relief for the first two days after the op, they then dished out paracetamol.

I can tell you It was very hard to be firm and demanding yet polite at the same time as I argued the case with staff.

By some miracle I never once used the word 'Bollocks!'.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

 

Wishing you all the best for your stepmum, Lyn.

And Julie, may you and Trevor have that  HAPPY & NORMAL Christmas.

 

Big warm hugs,

 

 

George

 

 

User
Posted 11 Dec 2016 at 16:02

Before Tony got referred to the hospice team, he contacted his GP about painkillers. She was happy to prescribe a regime that included codeine-based drugs and (later) morphine, and told him to take them regularly, four times a day. When the hospice nurse came on the scene, the morphine dose was gradually increased, and Tony had skilled advice from her about how to tweak and adjust the dose as needed.

User
Posted 13 Dec 2016 at 22:32

Shout it from the rooftops honey, you are the storm xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Dec 2016 at 09:26
Hi Julie

Am almost at a loss for words, I'm so sorry to hear of Trevors new challenges with this horrid disease. Glad to see you have his pain under more control so hoping things will settle now for him and give you both a little respite.

I empathise with one of your ealier comments of having a stubborn proud husband. I have one of those too!!! (won't let me drive, won't use a stick or wheelchair, won't let us apply for disability car badge!)

I'm not sure where the comfort blanket is at the moment but never the less I have been so frantically knitting all night with extra large needles so that it grows quicker. It is a special xmad blanket and I send it with lots of love and sincerety to use throughout the seasonal period.

Take care

Lesley xxxxx

User
Posted 15 Dec 2016 at 10:52

My PCa site was down most of yesterday so just checking in to see if Trevor has stabilised. Hope you are all ok, Julie? Thinking of you.

User
Posted 15 Dec 2016 at 19:04

I hope the hole isn't too large Julie and that some vigorous baling will help settle the dingy. I know you must be waving that baling bucket at all and sundry at the hospital and asking them to take their turn with it. I know I would be.

I wish (like everyone else on here I'll bet) that we could help with the hard work. You know we would if we could.

Keep smiling lovely girl. Let that man of yours see what a cracker he has in you - as if he didn't already know!!

Thinking of you all

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 15 Dec 2016 at 21:50
Julie

We've never corresponded but I've read your story with sadness. I have two teenage children, am 46 and just had my prostate removed last week

I'm sending my best wishes to you and your boys. I'm a secondary school headteacher. I hope their school is being supportive. If I can ever give any advice on the school system at times like this, let me know. If they are doing GCSE or A levels, exam boards have to take personal circumstances into consideration.

Hope that doesn't seem irrelevant.

Best wishes to you all.

Walter

User
Posted 15 Dec 2016 at 22:48
Walter thank you for the advice it's really appreciated, I worry so much about the boys . James was 17 last week and is trying to study frantically he is taking math, physics, chemistry, ( he takes after me by the way ) 😉

Life is so difficult even though I have fought hard to keep everything as normal as possible for the boys all the way through this journey the truth is life has never been normal since Trevor's diagnosis they have lived on a knife edge and sadly to have a parent that is different for what ever reason sets children apart from there peers.

It all has an affect.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Dec 2016 at 22:16

It goes much wider than that though - talking to exam boards is all about data but the boys need ongoing support, a mentor, bereavement counselling, young carers provision, or maybe just to be able to pretend they are exactly the same as everyone else. As Julie knows, Si's daughters are supported by a bereavement service even though Si is still very much with us - now that is great safeguarding / early help

Ulsterman, are you using a pseudonym? Now that the forum is open to public search, it wouldn't take very much for a parent, pupil or member of the locality to find 'your name' and 'secondary school HT' and work out that this is you!

Edited by member 17 Dec 2016 at 12:56  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Dec 2016 at 21:56

I gave the doctors & nurses on ICU some feedback after our experience the week before last - I am sure they appreciated it more than they could express! The thing is Julie, people like us can articulate what our loved ones need and fight like lions to get things sorted but who fights for the vulnerable patient who doesn't have someone in their corner???? It is so sad to think about.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Dec 2016 at 01:25
Happy for you all, hope you have a really great xmas.
User
Posted 20 Dec 2016 at 11:09
Happier Christmas to you

Happier Christmas to you

Happier Christmas to you whooo

Happier Christmas to youoooooooooooooooo!

Bazza

Barry

Ten. YES BLOODY 10 years since DX!!

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money!! 

User
Posted 26 Dec 2016 at 10:45
Yesterday must have been so hard with all the added pressure of Christmas. I hope you have an easier and more relaxed day today x
User
Posted 27 Dec 2016 at 09:50
Julie,

Just wanted to send my love and let you know that I'm thinking of you.

I had a similar time on Christmas Eve (my birthday) when our youngest grandson was rushed into hospital. I couldn't stop crying and had to hide myself away. I think all the worries and stress that I'd been bottling up suddenly came out. I felt so low. Fortunately our grandson was released in time for Christmas day. Turns out that a rapid rise in temperature had caused him to fit several times. It can happen with babies. Thank God it wasn't more serious.

Christmas aways seems to be a time when we find things surface that we are trying to put to the back of our minds. I think it's because we are reminded of the love we feel for those around us and the love they feel for us.

I hope things become easier for you all.

Steve xxx

User
Posted 27 Dec 2016 at 16:17

Julie, I saw your latest post soon after you sent it, but it made me so sad that I simply couldn't think what to say. It is all so horribly familiar to me, and however brave and positive you and Trevor are, you know, as we did, how it's going to end. Special dates such as Christmas, birthdays, etc sometimes only heighten your emotions as you compare them with previous, happier occasions you shared before it all started to go wrong.
I hope things will settle down for you all a bit now that you've got Christmas out of the way. New Year can be safely ignored, and that's probably the best thing to do with it if you can.

Keep in touch - you have been so generous with your support and words of encouragement to others that there's a big pool of collective goodwill and kind thoughts here for you to tap into when you need them.
Marje

User
Posted 14 Jan 2017 at 18:18

Wonderful - you, him and this news.

Keep on rocking and rowing Julie.

Love

Eleanor xxx

User
Posted 14 Jan 2017 at 18:58

Damn it , servers gone down again .........
Hang on , there you are , patched dinghy and all xxx

If life gives you lemons , then make lemonade

User
Posted 14 Jan 2017 at 19:09

Brilliant update :-) x

User
Posted 15 Jan 2017 at 15:49

Originally Posted by: Online Community Member
PS Don't let him near the strap-on though

I think we need to introduce the equivalent of a spoiler alert for your posts Lyn. Something along the lines of:

"Before reading further, please do not fill your mouth with coffee, tea, beer, any other liquid or food."

David

PS. I'm still cleaning up the mess I've made of my laptop and my kacks.

User
Posted 15 Jan 2017 at 19:01

Too late for explanations Lyn - the image is firmly (and disturbingly) fixed in my brain!

User
Posted 16 Jan 2017 at 19:29
I am so glad that Lyn explained that so elequently it has been for those newish to the forum a long standing joke about our ride on. The avatar is Trevor sitting on the ride on but by the shape of his hands he could well be sitting on a strap on. 😂😂😂😂😂😂😂😂😂😂😂😂

Love you all

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jan 2017 at 21:59

Hi Julie

I've been doing some research on Radium 223 since my OH will be starting it soon and you are right - it doesn't target the PSA. Nonetheless some men in some trials did see lower levels of PSA (and some had a a sudden rise). All seems a bit random really! And when you factor in Trevor's unique titanium and tumeric constitution best guess would probably be that no-one will have the foggiest idea. Hope he continues to be a medical phenomenon for the foreseeable...

Love

Eleanor

x

User
Posted 23 Jan 2017 at 22:34

From the Prostate Cancer Research Institute 2017 update:-

"Radium-223 may also reduce PSA levels. As most know, PSA levels are an indicator of cancer progression, with higher PSA values corresponding to worse outcomes. A significantly larger proportion of the radium-223 patients experienced at least a 30% reduction in PSA levels compared to the men who received a placebo. Although most patients do not experience a decline in PSA, they may notice a slowing of the PSA rise, which is a more common outcome with radium-223."

http://pcri.org/insights-blog/2016/7/8/xofigo-radium-223-an-overview

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jan 2017 at 22:41
I have just reposted something from Allathays on Raduim and PSA I am not techno enough to copy and paste it on here but he is saying the same that Raduim has no affect on PSA. I had forgotten that he had the ful 6 treatments. .

Lyn Zometa also doesn't reduce PSA it helps with bone pain and helps to strengthen the bone but has no affect on PSA .

So if Raduim isn't reducing it then what is ?

Titanium ? This is a very strong contender as Eleanor has pointed out.

Trevor himself as he is such an egnima this could be another strong contender

Abbiraterone I really doubt it after 15 months

Turmeric I also don't think so he has given this up

Cancer so active that it isn't giving of much PSA another strong contender given that the ALP is rising

Super human and about to make prostate cancer history another strong contender.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Feb 2017 at 01:44

Silly mare - you should have known that I would have been straight on to you ... bad news holds no fear for me :-/ 

Edited by member 01 Feb 2017 at 01:45  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Feb 2017 at 22:29
So just a smidge more serious update and I can't believe the difference 6 weeks have made.

Not sure what to call him anymore , Turmeric Trev , Titanuim T, or just Mr Shamazing . Wow what a transformation 6 weeks ago he could barely walk even sitting up in bed was difficult.

Today just 6 weeks later he has been to B&Q ( pensioners day 😆) he said he was going for light bulbs I thought that's ok not to demanding even the fact that he can walk to the car and is driving is a minor miracle . Anyway he arrives back and nearly reversis into my picket fence , of course I said very sweetly ! Mind the fence Darling ! That is what I was trying to say but my inner fish wife took over and what I actually said was ! For F..... sake you have nearly crashed the f...... fence.

His answer I had to park as near as possible because I can't carry the door very far. I know you are the thinking the same as me ( he only went for light bulbs) .

So upshot is he forgot the light bulbs but we have a brand new bedroom door 🤠

The crowning glory was when I said what the hell are you doing , what are you thinking carrying a door ! His answer was I know I wanted white but they only had it in cream ! 😱

So there we are 2nd Raduim in and we have gone from severe pain and not able to stand to 6 weeks later carrying a door . Remarkable doesnt even come close.

Just had mid term HB results and up again so it's gone from

9.0

9.1

9.8

10

Appointment for his teeth extractions is 16th Feb it is going to be a day stay not sure how many teeth they will take out but any amount will make him more comfortable.

Cardio appointment for Papworth is 10th Feb

So things at last getting sorted.

It's all go isn't it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Feb 2017 at 12:27

Ah the infamous train journey post; one of the few times in my life I have cried.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Feb 2017 at 23:41
Sorry Lyn yes a typo 3052😄Although some would still think a typo

Sorry again Lyn the turmeric has long been abandoned so it's just Trevor power know

Eleanor I am in the famous loop so unless some one pushes me into the next page by way of replies I will be forever in the page not found mode. (Could be the story of my life)🙃

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Feb 2017 at 09:29

Ah ha. I did it!!

We can't control the winds - but we can adjust our sails
User
Posted 21 Feb 2017 at 11:44

Dear Julie,

i am so pleased to see you both get some good news after all the trauma Trevor has been through.

Those results must be such a boost for you.

Super Trevor kicks ass yet again. Amazing!


Big Hugs from George & Lynn

User
Posted 14 Mar 2017 at 10:41
Firstly a Huge Thank you to Lyn for updating for me.

I haven't been able to log on since last Thur but thanks to Carol she has been able to sort it for me 👍

Had I have been able to update on Sun my post would have been everything is tickety Boo and we are chugging along nicely so fast forward 24hrs and the tornado struck.

All was fine until lunch time and then Trevor had tighning in his chest /nausea/blurred vision /sweating and excessive yawning , the yawning isn't described as a symptom in heart attacks but in previous attacks with Trevor this has happened so something to watch out for guys.

It is probably lack of oxygen to the brain caused by blockage in the arteries.

He took his gtn spray but the pain continued

So I hit the panick button , ecg was normal but he has had normal ecg before and then 20 mins later had a full blown heart attack so the paramedics decided to blue light him to Peterborough .

His blood tests X2 were normal ( they check for markers to see if the Heart has been under stress) it has got a name but I can't remember it.

He was allowed home last night looking and feeling much better! Phew!

So the Nuclear scan to check his arteries was already booked for Thur so that will go ahead as planned he has been having niggling issues for a few months hence the investigations . When we have been this route previously while waiting for appointments he has managed to jump the que by having a heart attack so you can understand my haste to hit the panick button and thank goodness I have in the past because quite honestly I wouldn't be sitting here typing about him if I hadn't.

Bless Trevor he is still trying to persuade me it was probably indigestion as ecg and bloods were normal but I know it wasn't indigestion and there is a blockage somewhere. Just hoping it is a collapse of previous stents and not that he will need new ones as that is a bigger procedure. Plus he already has 8 stents.

So today the sun is shining and everything is calm let's hope it stays that way .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Mar 2017 at 09:00
J

Your posts really should come with a warning, to burst out laughing with a new SPC in is quite painful. Keep going girl.

Thanks Chris

User
Posted 22 Mar 2017 at 21:35
So scores on the doors

PSA up from 3052 to 3473 I know dizzying heights but hey we have had worse.

ALP down from 355 to 244 again I know dizzying heights but hey it's gone down .

Calcium is low and T has been prescribed tablets plus vitamin D is also low if anyone knows if there is a conection I would be grateful to hear from you.

T is feeling ok and we are bumping along he has had a follow up appointment on his jaw and the healing has been slow as predicted so they won't attempt more treatment until his jaw is healed from the last onslaught but his eating has been better so ok he still can't chew nuts 🌰 but he has progressed massively in things he can eat so the 300 cans of soup have know been moved to the back of the cupboard . He has developed a taste for shell fish he couldn't chew a prawn 6 weeks ago so it's been a bit of a secret challenge to tackle a scallop 🤗

It has opened up a whole new recipe of turmeric based dishes 😛.

The heart issues are still ongoing and he is still experiencing tightenings and twinges next appointment is on the 30th for more tests I know it is just a coincidence but the pain he gets under his armpit I thought I was coming out in sympathy with him but I then realised it's my wire from my bra sticking in me. 😆

Lots of love to all.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Mar 2017 at 22:13

Another keyboard ruined by splurted tea.

Keep going, lovey xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Mar 2017 at 22:22

So good to hear you are still standing, scallop-tackling and making us splutter (mine was wine but I forgive you) in spite of the usual mad results Julie. PSA clearly has no meaning for Trevor so best we just concentrate on the bit that's coming down and give loud hoorahs for that. And another set of loud hoorahs for the fact that you don't have galloping armpit disease. (I've decided to go commando chestwise and give up on bras altogether - except for important occasions obviously - the Queen's garden party, the Oscars etc. Never found one that's even remotely comfortable...)

I think that you need Vitamin D in order to absorb Calcium but not sure quite what the link is. Maybe if the former is low it limits take-up of the latter so then you'd need a booster for both I guess?

Sorry to hear about the continued heart problems, and the slow recover from the horrendous teeth op. Extraordinary people the pair of you.

Keep on trucking.

Hugs

Eleanor

xxx

User
Posted 23 Mar 2017 at 00:05

I've just started on Vit D, large dosage for 3 months 3200, then down to 800. But I was advised this by my diabetic consultant not the onco. Not sure I've felt any difference yet. Another set of stats to conjure with, he is still there and eating scallops. What more could you want.

User
Posted 23 Mar 2017 at 06:19

Scallops, prawns, yum yum yum yum yum!

Now all it needs is a nice, well hopped, beer to wash them down. I recommend St Austell Brewery's Proper Job, 4 for £6 from Mr Tesco.

User
Posted 23 Mar 2017 at 07:00

Thanks for the encouraging update Julie.

We can't control the winds - but we can adjust our sails
User
Posted 07 May 2017 at 01:16

....... Or perhaps it is the strap-on :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 May 2017 at 01:32

I must be feeling a bit maudlin. I just spent ages looking for your brilliant train poem and finally found it on page 2 of this thread along with some of the funniest posts ever - look back and see how far you have come since autumn 2014 xxx

For newer members, I recommend page 2 as essential reading but have a hanky nearby.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 May 2017 at 10:39

Hi Julie

Throughout the 4 years you have always kept me smiling and it is the humor that keeps me going.

So what will be our new target http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif I find it so difficult looking back to the beginning of yours and mine thread all of the guys there that offered so much advice and sadly no longer with us.

but on a more lighter note we went to see Micky Flanagan last night and he started with how men weeing habits change as they get older it was called P*ss patch, now this should be played in every urology department in the country.

Girls want to know if any puppies are due soon ??

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 May 2017 at 10:45

You've shared your trials and tribulations with us Julie and had us in tears of sadness and laughter in equal measure. Yes Hope is something to cherish but so is the support of family and you are providing that in bucket loads

I hope today is a better day for T and you and the kids.

Let's all keep hoping for that cure

Bri x

User
Posted 08 May 2017 at 20:23

Dear wonderful, hopeful Julie

Congratulations on your 4thaversary... Johsan has put it brilliantly (she has a way with words that one). But she has missed one thing out and that's the mad hope that you have sprinkled in bucket-loads among us lot. That's been worth the world to me - and clearly to many many others on this site.

Thank you for being awesome.

Lots of love

Ruth (Eleanor)

 

User
Posted 16 Jun 2017 at 21:00
So another dip in the roller coaster ride Trevor is in hospital he was taken in on Wed by ambulance with severe chest pain . We weren't sure if it was his heart but it turns out it is the Mets in his sternum . He is not able to take in a deep breath without pain.

We had oncology on Mon and

PSA up from 3838 to 4722

Alp fairly stable last month 140 up to 144

The Wiz on mon advised continue with Abbi as although there is another jump in PSA his pain level remained the same fast forward 48hrs and everything was completely different he said his pain level in a score of 10 was a 9.

He is having morphine through a drip and a strong concoction of other pain meds. He is not eating very well which is very unlike Trevor he says the hospital food has seriously gone down the pan since his last visit.

So I am fetching him home made food tomorrow, the blinking abscess has also come up again and the plan is to lance it rather than give more antibiotics.

They have discontinued Abbi .

So it looks like Father's Day will be around his bedside. The boys have ordered Father's Day cards with there photos on and 2 T Shirts , one with there photos on saying !We Love You Dad !

The other one says

Trevor

The Man

The Myth

The Legend

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Jun 2017 at 14:02
Really sorry to hear About Trevors situation, hope that Father's Day love perks his body up a bit. Take care Julie.

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 18 Jun 2017 at 00:00
Oh Guys I wish this could be a better update today was my first visit since Trevor was admitted on Wed he is in Peterborough Borough Hospital . Not being able to drive and home commitments meant today was the first day I could visit.

I have spoken to him on the phone and have had concerns over what if anything he has been eating . Nurses on the phone have assured me he is fine and eating well . So when I arrived today at 2.15 and his lunch was still on the table stone cold untouched he was asleep and totally unaware that food had been delivered.

I have since found out that this happens at every meal and he has lost 2.5kg since Wed . He doesn't have any appetite for food his pain level is still making it difficult for him to move.

He asked for a cold drink which I purchased from Costa as the only alternative was a warm jug of Luke warm water next to his bed . I asked the nurse for a straw she looked at me is if I had asked for Maruana.

His abscess had burst on his face and saturated the bed and his pjs the nurses had dressed him in clean pjs and clean sheets but not washed him in 30 degree heat.i am so angry and so disappointed in the NHS I will be lodging a complaint with the hospital.

I am so angry and sad at the same time . I intend to be at the hospital for 9am on Mon and they better watch out because I am armed and dangerous. I will be wheeling him out of there in a wheelchair and demanding home care.

There is loads more but I can't even put it into words .

You place your trust into hospitals and they let you down massively.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jun 2017 at 17:05

Dear Julie,
I am saddened to read your recent posts , I feel a bit awkward writing this as it's to someone I don't know, yet have read their thoughts and experiences . My thoughts are with you and your family. I have read your posting laughed, cried and reflected on them, your are one wonderful lady, and a dear wife. This is a cruel thankless disease yet somehow you have squeezed laughter memories and life from every corner for Trevor and you and your family.

Leila x

Edited by member 20 Jun 2017 at 20:26  | Reason: Not specified

User
Posted 21 Jun 2017 at 20:37

Julie, how are things? Worried about you x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jun 2017 at 18:26

Dear Julie,

What a nightmare, and what criminal neglect. You do need to roar like the lioness you are.

After all Trevor has gone through, this is unforgivable.


Reading your posts have had me absolutely boiling mad at the treatment you've both been given.


Be strong Julie, stronger than ever.
As you rightly say, Trevor has never stopped fighting and neither have you.


Big warm hugs from George (and Lynn ....she's even angrier than I am).


User
Posted 24 Jun 2017 at 22:30
HB dropped so he has had a blood transfusion today, he has lots of pain in his tummy which is very swollen he hasn't pooped in days so they are thinking this might be the problem . Scans have been ordered on his abdomen and bowel .

Bloody pirates are still hanging around .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 26 Jun 2017 at 09:39
I've been thinking of you all night Julie, this is such a devastating time for your little family. I think the vast majority of us would wish to go peacefully and in my humble experience, a morpphine driver does make that possible. I believe they only offer this once there is no hope for any recovery, my father's passing from this life was made gentle by it, as was my sister's earlier this year. Given everything you've said I'm hoping that Trevor gets one so that the boys and you (and Trevor) do not have to endure this awful phase any longer than absolutely necessary.

I'm with you in spirit you fantastic wife, mother and human being. As always Lyn gives great advice re James, my daughter is a Teacher and I'm sad to say there is always at least one child having to cope with this every year, they will understand and do what's right for him.

Hugs

Devonmaid xxxx

User
Posted 26 Jun 2017 at 10:55

Hi Julie.
I am right there with you and can understand the anger and frustration you have experienced; graham has also suffered at the hands of incompetence whilst in hospital recently for kidney failure and he too is now walking the same road as Trevor. Stay strong Julie but lean lean lean as much as you like on all your friends and supporters on this site.
Yvonne

User
Posted 27 Jun 2017 at 23:56

Trevor had some tests today that indicated no tumours in the bowel or abdomen - although he does have a chest infection.Still waiting for MRI.

Julie says his bloods are all over the place but he does look better than at the weekend.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jun 2017 at 13:10

Is there any news of Trevor? Not seen a post for a couple of days but it's also got stuck on the turnover. I will try and get it to next page.

User
Posted 30 Jun 2017 at 13:14

I've been wondering too Paul.

Keep telling myself, no news is good news

We can't control the winds - but we can adjust our sails
User
Posted 01 Jul 2017 at 00:32

Well that's a relief. Has his swollen tummy gone down a bit?

Has T ever talked about what he would want to happen when the time comes? It looks like you may have a chance of enough respite to maybe get him home if that is what you want but probably need to hound the relevant people now so that everything is in place if the opportunity arises to have him moved. Is there a home care team or social worker at the hospital? Who can liaise with the Marie Curie nurses, district nursing team etc? How much notice would they need to deliver a proper bed and any other equipment?

How are the boys?

Edited by member 01 Jul 2017 at 01:03  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jul 2017 at 23:22

Shamazing 😃😃😃 really, really happy to read this xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jul 2017 at 15:19

Julie,

 

We're back from 'The Mill Weekend' now, and couldn't have wished to read better news than this today.

WOW!  WAY TO GO TREVOR!!

 

We're so happy for you both, Julie.

 

George & Lynn

xxxx

User
Posted 07 Jul 2017 at 12:21

Originally Posted by: Online Community Member
the wheels are in motion for Trevor to come home

Good God! In-f'ing-credible. What's he made of?

He's just like Leonard Cohen when he made his last album. Everyone got worried he was on the edge of death. Cohen's response:

"I said I was ready to die recently. I think I was exaggerating. I’ve always been into self-dramatization. I intend to live forever.”

He was wrong. I think Trevor could be right.

User
Posted 07 Jul 2017 at 19:15
Wow, wow and thrice wow. Trevor is such an enigma but he's got the most amazing fighting spirit and isn't giving up yet. Knowing Trevor, I can see him astride that ride on mower in the near future.

This is the best news ever.

Lots of love

Devonmaid xxxxxx

User
Posted 12 Jul 2017 at 20:23

Great to hear, you must be so pleased

Viv
X

The only time you should look back is to see how far you have come
User
Posted 18 Jul 2017 at 22:50
So what a crazy roller coaster ride we have had in our pca journey .! We have just about ridden every loop the loop possible .

Firstly the good news Trevor is recovering well and gaining strength daily he is still weak and his energy levels are soon exhausted he is very much battered / bruised and very wobbly around the edges but he is getting there and that spirit of his is fighting back. 🤗

THE FAT LADY HASNT EVEN GOT ON STAGE YET

Wiz visit yesterday and I will get to the scores on the doors but first the embarrassment on her face was obvious she admitted that the Drs on the general ward had totally misread Trevor's condition . She also admitted that heads had started to roll . So basically he went in for breakthrough pain and when the pain wasn't under control they upped the morphine level to such a high level that he was unable to communicate.

The pain wasn't actually coming from the cancer it was from the lung infection but we were told it was from mets in his sternum.

His blood results showed an infection but it was ignored , his swollen stomach was wrongly diagnosed as cancer in his liver , his confusion was wrongly diagnosed as cancer in his brain.

His kidney problems were wrongly diagnosed as cancer in his kidneys and when the DR on the general ward told me that Trevor only had weeks to go that was also wrong all of this was diagnosed with no hard facts , no scans just assumptions .

Basically they had written him of without hard evidence . But they hadn't asked me what I thought and they certainly hadn't asked Trevor.

If assumptions were the only thing to go on then Trevor would have died 10 years ago when he arrested with a heart attack in the Royal London ! But he didn't and I am famous for my Buts .

It is so scary that if I hadn't have been there fighting his corner then this post would have a very different outcome.

So the confusion wasn't spread to his brain but from overdose of morphine and the Sepsis

His swollen stomach was gas and food because he was unable to eat and couldn't pass stools

Kidney damage was because he wasn't able to drink himself and was severely dehydrated

His scans have confirmed .

No spread to soft tissue

No new mets to skeleton

I have had my moan and I will be making a formal complaint BUT not yet I need my energy for Trevor , I don't know how he has come through that I don't know how all of us have come through BUT we have . We have all survived to tell the tale

WHAT IS HE MADE OF its crazy , I don't have the answers all I know is he has such a zest for life and QUIT isn't in his vocabulary.

So this is were it gets even weirder Abbi was stopped at the beginning of June when he was admitted to hospital

The Wiz explained that she expected a pretty big rise is PSA over the last month without Abbi and not to be alarmed.

So SCORES ON THE DOORS

PSA JUNE - just before admition to hospital - 4723

PSA after no Abbi for a month - 1787

😱😱😱😱😱😱

W T F happened there I need to say that again WTF happened there .

1787 How Can That Be .

I did get them to check and recheck

Toatly gobsmacked , lost for words just totally gobsmacked . I know Lyn sometimes with ext spread the PSA lowers but scans aren't showing that. 🙃

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Jul 2017 at 11:41
Julie

Wonderful news but very alarming from the point of view of the general ward, that scares me rigid! I almost can't believe that they just wrote him off like that (almost but I can I'm afraid). I lost my trust in the NHS some time ago I'm really sorry to say, something is rotten there and needs to be sorted. Of course I'm not saying that there isn't fine and fantastic work there, there is and I've been witness to that too but when you think of people with no one to fight their corner, it's just frightening.

Anyway, you've got through that and Trevor suffered more due to his poor management and that's not right. Between you though, you are the epitome of fighting spirit and that far lady isn't getting on stage today nor in the near future.

I can only think you must be so exhausted by all of this, I really don't know how you cope, but you do. You are remarkable.

So happy that your man is improving, he's a superstar with a superstar caring for him.

Lots of love

Devonmaid xxxx

User
Posted 19 Jul 2017 at 12:14

Originally Posted by: Online Community Member
I almost can't believe that they just wrote him off like that

This is what makes me really mad. I am in favour of voluntary euthanasia. I want the right to say "that's it, I've had enough, time to switch me off please". I know what response I'll get if/when I say it. Trevor, he's got more desire to live than probably any 10 of the rest for us. And he gets written off!!!

FFS.

User
Posted 19 Jul 2017 at 18:17

That PSA drop is incredible. In pattern terms it's a halving which is pretty good. This may be a positive reaction to stopping a drug. I had the same when I stopped casodex, surprising but it happens. Whatever, despite the worst efforts of the general ward Trevor is on his way back. Brilliant news.

And for you julie I hope you can get some time for yourself you know you need to have some time just for you. Thinking of you all.

User
Posted 20 Jul 2017 at 01:04
I have just got back from presenting to the national conference football, and as ever your tales have encouraged me to never stop believing Well done u n Trevor, rooting for u every day, Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 03 Aug 2017 at 09:11

Mow the grass???? Julie has a strap-on and Trevor isn't allowed near it :-)

Great news Julie xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Sep 2017 at 23:00
Ok guys so PSA climbing rapidly 3.200 since July so pretty much doubled in 8 weeks I will let all of the mathematicians work out the doubling time , but still under the 4000pre Sepsis here comes the important bit AlP is steady and all other bloods are good.

A bit of a cough but all in all feeling good , looking good and energy levels are on the UP

Life is back to fairly normal ! Well normal for us he is not yet back on the ride on but hey there is time before summer is completely over.

Life on the Trevor roller coaster continues and he is booking tickets for those that would like to ride in 2018 .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Sep 2017 at 21:26
Hello my lovelies ,

Wiz on Mon just gone and she is still flabbergasted at the drop in PSA when Trevor was of treatment for a month ( Abbiraterone) she has never seen the like . ! 😳

So back to reality and latest PSA up to 3800 it had to happen but hey we have got about 15 years for it to rise to the original 13000 . The all important bone markers are good everything is stable and all other bloods are good .

The blot on the horizon is still the teeth and abscess that is ongoing , Trevor has to constantly wear a very large plaster covering his jaw he has now got a second eruption in his skin were puss is oosing from . Aunty Bs back on board.

Nothing much can be done internally as the healing process is compromised from the Zometa . But hey in the grand scheme of things it is just a blot on the horizon.

For Trevor not being able to eat the foods he loves has hit hard he loves his food , chewing anything is a problem .

He loves roast lamb with all the trimmings and has been craving it for ages but he just can't chew it so when on Sat he brought me a recipe for 7 hr slow roast leg of lamb

I am not going to lie my first thought was 7 hrs wrestling a leg of lamb wasn't my idea of a lazy Sun , not that my Sunday's are ever lazy . 😄

Second thought was Jules you can do this , third thought was how about I do two legs of lamb and skip mid week meals. I am nothing if not resourceful.

As it turned out 7 hr lamb is only 45mins prep and 6 hrs on the sofa watching " only fools and and horses reruns " Cooshty 😁

So Sun lunch was

7 hr lamb

Dauphinois potatoes

Spinach

Carrots with honey glaze

Home made rice pudding.

Tonight's tea

Was Lamb ragu, Trevor said is that spaghetti bolognaise , 😂😂😂😂😂

I said not on my watch .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Sep 2017 at 00:47
Lyn you know me to well I do ttry and play the mouth issue down because I don't want to put others of from having Zometa it worked brilliantly for Trevor for 3 years and his is a very rare side affect , but it is horrendous he has to flush his mouth with a syringe 3x times per day and use Corysidil after every meal . The bone is still growing between the bottom teeth pushing them out and the extractions he had in Jan are still not healed because the Zometa stops the healing process. It's a rock and a hard place . He is seen every 2 weeks at the hospital but only to monitor there isn't anything more they can do . Long term plan is to file the bone growth back down but if they can't guarantee his gums will heal they are reluctant to attemp anything more.

So to be able to chew anything is almost impossible and for Trevor who has always been such a foodie it is depressing.

Si Trevor gave up Turmeric and adopted the Fosters diet about 11 months ago , to do a proper scientific study we need you to give up Fosters and go on the Turmeric diet and then we can swap analysis data . You can't cheat though and put Turmeric in your Fosters because that won't work . 😄 That would just fuddle the stats and then Jamie would be in in a downward spiral and end up thoroughly confused , can you imagine if he was looking after both of you.. 😳

David yes please send the recipe I am stocking up on lamb and foil at this moment .

Love to you all X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Sep 2017 at 21:03

And hugs and love and more hugs from me too.

Rxxx

User
Posted 29 Sep 2017 at 12:34

Dear Julie,

We both send you and Trevor loads of love.

I've been absent for a while dealing with annoying problems,which pale into insignificance compared to your epic battle.

Words cannot describe how inspiring you both are. The hope and encouragement you've given (and continue to give) to so many people here is magnificent..

Warmest wishes always,

George & Lynn

User
Posted 30 Sep 2017 at 10:13

Highs and Ups - hooray - good lads, lets have more of you.
Lows and Downs - boo hiss - on yer bikes, get out of here, we don't need you.

David (aka Chris, Colin, Chester)
xxx

User
Posted 17 Oct 2017 at 22:38

Originally Posted by: Online Community Member
 You don’t know who you are messing with !

BFN
Julie X

 

Never was a truer word said - it seems that train ticket you bought is still valid for a few more trips xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Oct 2017 at 22:24
I have just watched Children’s hospital and for me it puts everything into perspective there was a 15 year old girl with Non Hodgkins Lymphoma who had undergone 15 rounds of chemo and her 11 year old sister has just donated her bone marrow to help .

For me these are babies that haven’t lived a full life and are facing so many trials and hardships .

So what am I trying to say I suppose although yes for us life is tough / for others it is much tougher .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Oct 2017 at 20:33

Hello Julie,

I'm full of admiration, for the way you continue to keep us informed of Trevor's difficult pca journey.  Trevor is certainly made of stronger stuff than I am.

 

Since my radiotherapy treatment, I don't mow the grass, my wife won't let me. But I am able to drive the car, but not for long distances. My only worry is tiredness, and lack of body strength, why I don't know - I'm not as ill as your brave Trevor.

 

I continue to pray for continued blessings, for Trevor, yourself and the family.

 

 

Frank.

User
Posted 29 Oct 2017 at 22:51

You know that we are and always will be your crutch though i suspect that you prefer to manage by yourself.

Life is so hard for you all at the moment and is likely to get worse. There isn't anything we can do to help apart from be here for you. I'm one hundred percent certain that if it was just a matter of everyone sending you positive vibes to lift you all, you'd be sky high now with the speed of the response.

~Instead of which we watch and wait with you and send you virtual hugs and the warmth of our caring..

We can't control the winds - but we can adjust our sails
User
Posted 30 Oct 2017 at 20:30

Hi Julie

Must be impossible to think straight under the circumstances - and given 4-years-worth of anxiety and exhaustion piling up - but I do agree with you. Are you able to talk to the Wiz about it? Maybe she's just assuming that you will both want to keep on fighting since that's what she has seen you do over and over again.

Our consultant kept encouraging us to keep going until eventually she realised that Tony had absolutely had enough; she really supported us with that decision once she understood it. It's a rock and a hard place and neither decision will be an easy one of course but I hope that common sense prevails. You have both been through enough.

Will be thinking of you lovely lady and sending love and hugs and a shed-load of comfort-blankets.

Ruth xxx

User
Posted 30 Oct 2017 at 21:03

Julie, no one can give you the right answers as there is none in this situation. You can only follow your instincts which have always served you so well. As Lyn suggests he is not on treatment at the moment just care to make him comfortable. I hope you get chance to talk with him again. It’s a long road and we know the end comes at some point. If this is it, I so hope he goes with as little pain as possible, knowing you could not have done more to support him. I am thinking of you both and your family, it’s so so hard. Your friend Paul

User
Posted 31 Oct 2017 at 09:59
Oh Julie

I haven’t been on the forum for a while as John is doing ok and we needed to live a little more normally. I am so sorry to hear this latest update from you, the forum emergency fund is available for you, just say the word. You have been an absolute lioness for your man, but you remain one of the most realistic people I know. Your boys need you now Julie. Hugs and love from me

Devonmaid xxx

User
Posted 01 Nov 2017 at 07:27

Julie,

There is nothing I can say that will make it any easier for you and the boys. Have faith in the Wiz he/she has served you well. We are all thinking and praying for you and Trevor.

With love

Molly xx

User
Posted 01 Nov 2017 at 21:47

Julie
May I send my most sincerest condolences. Haven't been on line for a few months but glad I have dropped in today to be able to send you my love.
Lesley xxxx

User
Posted 02 Nov 2017 at 16:20

Julie

I'll make sure there are prayers for you all.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 28 Nov 2017 at 17:11

Birthday thoughts and wishes Julie on what must be a sad day though it is supposed to be your own special day.

I hope you and your boys managed to get some pleasure out of it,among all the sad memories.

Even if the time comes when you think you're ready to leave the site, you'll never leave us, because you and Trevor will always be remembered for your love and fortitude towards each other but especially for you Julie for the way you help others still on their journey.

Thank you for sharing your thoughts, hopes and dreams with us as well as Trevor's final journey.

Take care of yourself and your boys. No longer boys though eh? but young men to be proud of

XXXXX

We can't control the winds - but we can adjust our sails
User
Posted 30 Nov 2017 at 11:32
Julie sincere condolances to you and your family, you sound like you gave trevor the send off and celebration of his life he so well desereved, ive followed your journey with tears and laughter at your humour, your such a brave woman and youve helped others with your advice and sharing your experiences to us on the start of this rocky road ahead, just sending lots of love.joxx
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User
Posted 27 May 2014 at 18:36

Julie i have just noticed that you have come across to the dark side http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Welcome i hope you enjoy you stay http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Don't deny the diagnosis; try to defy the verdict
User
Posted 27 May 2014 at 23:25

OK so here we are on the dark side, boxes are unpacked , ornaments are neatly arranged, kitchen is up and usable.  I have to say moving to the dark side was a scary thing to do but it is not quite as dark as I thought it would be.  There are friends here and Si has his fish tank so it's not as scary as I thought.

Given a choice I would rather be under the pca undetectable with no lymph or bone mets, but hey ho I wasn't,t given that choice.

Our new grandson has visited today, 4 weeks old (he didn't drive himself) proud Mum and Dad bought him in his brand new car seat, I have cuddled and sniffed all afternoon, the newness of new life. I am an atheist , sorry for those that I might offend but I don't believe in God or a afterlife, what I do believe is our memories live on in future generations, the future is our new beginning. The passing on of our genes and memories,  We live on in our children, grand children etc. . We will live forever.

Watching Trevor today cuddling little Louis , priceless. A wonderful moment

This is just my thoughts and beliefs , we all have our own belief and what ever is right for you I respect.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 May 2014 at 00:37
Hi Julie,

Whatever your beliefs the miracle of life is a 4 week old Grandson😍 even if he is a bit behind in his driving skills🚙

I hope Trevor is bearing up and coping with your zany humour.

Take care,

Life is for living

Barry (alias Barrington )

User
Posted 28 May 2014 at 08:46

Julie my other half is a complete non-believer too, much as Trevor believes in fact. Me, I'm more ambivalent (~called hedging my bets perhaps!!)
We co-exist happily together each with our own views. I am happy to accept anyone's bviews as long as they don't start telling me to change mine.

Edited by member 06 Jun 2014 at 11:52  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 02 Jun 2014 at 09:22
I've found your new hiding hole, Julie.

I don't intend to change anyone's views, we still pray for you all, no matter what ! The medics can't do it all themselves.

Julie, reading your last posting before you moved I'm surprised with how well you are coping, well done girl !!

In our house we've only had 2 breast cancers, 1 basal cell carcinoma and my PCa, so I count ourselves very lucky.

Blessings to you all.

Chris.

User
Posted 06 Jun 2014 at 10:42

Onco visit yesterday, I was running late as usual so decided to wear my new skirt rather than iron something. Off we toddle slightly apprehensive as T missed a Zometa infusion when he was in having his stents fitted and we were both wondering would this affect his psa.

I helped him off with his boots for his weigh in (3kilo lost but he has been very careful with his diet) the extra weight he had gained was probably not helping with the heart issues, any way bending down back on with his boots. We go and sit back down and a very nice lady came over and said "excuse me dear your label is hanging out on your skirthttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif Know every one in Oncology knows how fat I really am and how much I paid for my skirt , if Trevor didn't have mets in his ribs I would have elbowed him for not telling me.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Score on the door 15.4 so another drop for those newbies who haven't read our journey his starting point was 13000. Trevor was for the first time slightly negative at this drop, I think because he has had such huge drops in the past , his last psa 12 weeks ago was 25.2 . After I gave him the pep talk , any drop is good and after missing his last infusion etc etc he seemed more positive.

We then spent nearly an hour with our lovely oncology nurse Sue, she also gave him the pep talk and asked him how he copes with everything for the first time since his dx he opened up and admitted that some days he wants to give up. Again for those newbies (heart attack, stroke, chronic asthma) and of course cancer. Our roller coaster is pretty steep. He then looked at me and answered for Julie and my boys that's why I don't give up. Yes I was teary eyed. Then typical T said shall we have lunch in the canteen. So off we toddled but this time with my label firmly tucked in.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Jun 2014 at 11:31
One thing I've quickly learned is how this forum can bring a tear to your eye. Another one reading the above.

Good luck to you both.

Paul

Stay Calm And Carry On.
User
Posted 06 Jun 2014 at 11:55
At least it was only the label and not the skirt tucked into your knickers. Now that's embarrassing believe me!!

You are both such strong people. All the best Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Jun 2014 at 12:18

PSA drops often get slower %-wise as the treatment progresses. So long as it's still downwards then that's the main thing.

I recall agonisingly slow drops at times but learnt the above.

User
Posted 06 Jun 2014 at 12:33
Hi Julie

glad to here the drop in psa if Trevor is anything like Eric the scores on the doors don't matter any more he dosent even ask now I do.

Made me chuckle about the skirt at least someone told you I would have just let you walk about all day like that making people giggle.Good to hear Trevor is getting some sleep Eric exact oposite now he's sleeping all the time up at 8am drove daughter to work by 9,30 had to send him back upstairs he will probably waken around 5pm. last until 8pm .inbetween got to give him a poke just to see if he is.still with us gives me time to see to my Mum making sure she takes her meds get her shopping do some housework then back to Eric.

Sending you and Trevor our best wishes

Carol

User
Posted 06 Jun 2014 at 12:46

Must admit Julie, I'm fast getting to the point where I don't want to know some of Neil's results ! Good that Trevor's PSA is on a downward slide though. I rarely wear shirts but am often guilty of wearing my pants back to front. Thankfully a reasonably quiet week here, but it's another oncology appointment and a second bout of chemo for Neil next week. I can't get over how frail he is starting to look. Like Trev, from what he has said, he carries on for me. Have just taken him up to Bristol Downs where we sat in the van and had coffee and carrot cake, just take one day at a time and see how he feels. Love to you both !

Fiona.

User
Posted 06 Jun 2014 at 13:27
Lovely post Julie and more good news. It is certainly a Roller coaster this disease and you have had more than most. I am just about to go off for my latest results so hope I can continue the trend! Have a relaxing weekend and celebrate!

Edited by member 06 Jun 2014 at 13:28  | Reason: Not specified

User
Posted 06 Jun 2014 at 17:39
Great news Julie, I also thought you was going to say your skirt was in your Knicks :)

Here's hoping your ride is smooth through the summer (and beyond)

Bri x

User
Posted 07 Jun 2014 at 00:00
Julie, a drop is a drop is a drop. We all know how important doubling time is so presumably halving time is just as significant. Trevor's halving time is about 15 weeks; tell him the fact that he has a halving time is great news! With a PSA of only 15.4 there is nothing to stop him getting out there and cutting the grass.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jun 2014 at 11:28

Hi SS Julie ( for newbies Julie and I are Soul Sisters)

Your news of Trevor's PSA continuing to drop has cheered me up no end in what has been an awful week not just for me and my family but for others as well. Just tell Trevor that the next drop will take him to a score 1000th of that at diagnosis very , very few Men get to say that.

I laughed at you and your label, unlike others I did not envisage you with your skirt tucked in your nicks more of a Paddington Bear moment 'If found please return to Tom Cruise' or something.

The harsh reality of "man jobs" has hit me this week, I have never been any good with gadgets or tools maybe because I have never had to be, so this week I decided to take on the strimmer ..... the results were a little haphazard as in oops I didn't like that poppy anyway and oh s..t that was my own foot. After about two hours I had managed to complete the task of edging all our lawns, significantly reduced the stock of plants, almost remove a toe or two and finally the wretched thing stopped working. How was I to know that rack I took it off on the wall was the thing that charged it ! My next door neighbour was very sweet and refrained from telling me what a muppet I was. He was very sweet and actually mowed the lawns for me as he was worried I might do serious damage with the mower. Maybe I need some of TGs super grass stuff.

Tomorrow I will see what havoc I can cause with a hedge trimmer (Chainsaw massacre part 3 coming up I fear)

Maybe I need to come and get lessons from you, Trevor and the boys xxxxx

your SS forever

Mo

xxx

User
Posted 08 Jun 2014 at 11:44

The Man Jobs,

Mo maybe we should start a new thread with helpful hints and operating instructions for all of us lady's that find Man Jobs so difficult. Of course then we would have the big debate on which of the 24 headings we list it under.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif and a route map would be needed to help us find it again.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I am no shrinking violet and years ago actually built a brick wall, OK not exactly a wall more of a brick border, but it was 4 bricks high and in a straight line. So why do I find all of the jobs that Trevor used to do so difficult. I was known locally as the flat pack Queen, I can assemble anything in flat pack form faster than you can say Ikea.

Give me anything that needs plugging in and I am totally useless and as for the ride on, well that's a drama in itself. I can't even get on it, let alone start the blooming thing and yet I watch Zack and he is 9 and he is zooming up and down on it. I find it very frustrating.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I have taken a leaf out of TG's  book, (no pun intended) not the fake grass that's not possible in an acre. Fake flowers, I kid you not. My plant pots are brimming with colourful blooms, they don't need watering , pruning or dead heading. So I have got that one sorted.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Jun 2014 at 12:24
OK you two I can see that I will be in for some hard bargaining but I will throw in some very nice artificial ( note not the plastic word) hanging baskets🌻 and 4 look-alike topiaries 🌳 Genuine drip dry, never lose their shape....guaranteed 100% artificial .....can't be fairer than that

Life is for living

Barry (alias Barrington )

User
Posted 08 Jun 2014 at 12:35
I see Louis Van Gaal has asked Utd to lay semi-artificial grass at the training pitches at Utd's training ground. Why not go the whole hog at home?

http://www.dailymail.co.uk/sport/football/article-2651382/Louis-van-Gaal-orders-training-pitches-ripped-Dutch-boss-rings-changes-Old-Trafford.html

Stay Calm And Carry On.
User
Posted 08 Jun 2014 at 17:19
Barry (tg), what would the girls do with their ride-ons !!!!

Julie, YES, whatever drop, IS a drop in the right direction.

My PSA is due August and I don't expect a drop, but a slight rise.

Chris. xxxx to the girls.

User
Posted 08 Jun 2014 at 19:16
Fingers crossed for your next results Chris

Bri

User
Posted 08 Jun 2014 at 21:45
Agggg how did I miss this post?

I'm thrilled to see that drop. For most people that would be amazing, good on you Trevor. Seriously. Trevor's PSA must go down in the annals of huge PSAs and look, he has many serious health problems and yet, he is a born fighter. Must be something in the Herriot blood line (Julie are you still doing the cancer course? ).

I do lots of man jobs too, I have tended to try my hand at most things along the way but John is better than I am, more patience for a start. At least I get things done, if not perfectly. I would rather not have to take the rubbish out though, that's the worst one.

Loads of love

Allison xxxx

User
Posted 08 Jun 2014 at 21:59

Hi Everyone,

I find the conversation very interesting because I am right at the beginning of the journey you are all taking.my PSA is over 13 and my scan confirmed " suspicious area " and I am having my biopsy on Tuesday.From what I can gather I will then have some decisions to make.I am now 70 years old so that may make some decisions easier.my wife Diane keeps re-assuring me that she will ne there for me whatever which both makes me feel better and also guilty.I think I will find it easier to follow other peoples thoughts and feelings and so please forgive me for butting into your conversation.

Love

Raymond

User
Posted 16 Jun 2014 at 14:32
Raymond. Forgiven, but if you need answers it is better to start your OWN thread.

Julie,

It was good to meet you and Trevor on Friday, keep up the humour, and tell Trevor it was good comparing notes and I will be raising the topic of awareness aimed at the Black women on Wednesday at Westminster.

Take care both of you, and the lads + ALL the puppies !!!!

Chris. xxxx

User
Posted 21 Jun 2014 at 21:14
http://community.prostatecanceruk.org/posts/t9496-Advanced-prostate-cancer
NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Jun 2014 at 22:55
Julie,

You've found your old thread, well done.

Chris. xxxx

User
Posted 23 Jun 2014 at 01:43

Firstly glad that you are all back safe and sound from Leicestor and that you all had a really good time. Just ever so slightly jealous that I couldn't be there. Did you eat all of the food because I haven't received my doggy bag.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

Secondly Chris I think you misunderstood my comment about targeting women, I meant all women not just black women. Awareness for breast cancer is all around us, on buses, when we pay for something the little box on the counter full of pink ribbons, any way that's for another topic.

Thirdly Trevor has had his invite for REHAB but we said NO NO NO, not the Amy Whinehouse rehab but the Cardiac Event type rehab. This is basically a monitored gym work out.  So T has been told he can't use any of the equipment , he is not allowed to do any impact activities. So his gym work out is a slow and steady walk around the outside of the gym. How much is this costing the NHS http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif, he can and has been doing slow walks around the field with our dogs. (cost to tax payer nothing).http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif Sorry but this is madness. But Trevor has to go to rehab and we said NO NO NO.

So next gripe Cardiac Event, (what's that all about) sounds like a Party in the Park, Rick Mayal had a Cardiac Event, no he had a heart attack. Why do they keep changing the terminology. no wonder we are all confused, the next thing we know PCA will be Walnut Challenged.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Jun 2014 at 09:45

Julie,

I think it will be targeted at ALL women as one can't be 'racial' !

Most of us are home safe, some are still getting home, Barry (TG) is stopping of beside the Thames, the Scottish contingent should be home tomorrow. Yes there was lots of food left, I didn't get a doggy bag as I was too busy doing the photos ! We will have to try to get you there NEXT year!

I should think Trevor could get enough exercise walking round your boundary fence, it would be cheaper than the gym !

We hope that Trevor keeps on improving slowly, like the rest of us, how we look to outsiders belies how we feel health wise!

Chris. xxxx

 

PS.  Just had a good giggle over "Walnut challenged"

Edited by member 23 Jun 2014 at 09:49  | Reason: Not specified

User
Posted 23 Jun 2014 at 10:23
Hello SS

Trevor and the Gym, OK so the NHS want him to go into rehab for his cardiac event. I say you should suggest that he puts his feet up eats a large flying fish with rice and peas pops the occasional beta blocker and cuts the grass once a week. Far cheaper & much more fun . Of course they are just terrified they would induce an 'event' by asking him to ride a bike or something.

I do think walnut challenged for PCa could be modified a little maybe all the men on this forum have a nut allergy.

I was laughing at Leicester at the Elf and safety ..serve yourself toast but caution the machine may be hot ....No kidding.

xxx

Mo

User
Posted 05 Sep 2014 at 00:40

Hello Guys,

It has been ages since I have posted anything,  dare I say it things have been pretty smooth. OK we have had a couple of chest infections, horse size Aunty Bs and shed loads of steroids but no flashing blue lights, so we have been sailing in much calmer waters.

 

Grass is sort of cut, well half cut then the ride on broke.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif  After 5 years of living in the worst house in the street I have decided to revamp and decorate, it still is the worst house in the street from the outside but inside I have gone all Gok Wan, fresh paint, matching curtains and throws all in a very fetching grey, apparently grey and silver are the new look. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif.

 

So anyway enough rambling and my reason for posting , PSA results tomorrow , we see DR T at lunch  time it seems ages since our last visit now we are on 12 weekly appointments, it almost seems a life time ago, funny how you can put the PCA on a back burner something I never thought possible this time last year, and now here we are again with the old familiar stomach churning worry that we all have the night before the big day.

So if anyone is still up and awake wish us luck and keep fingers and toes crossed.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Sep 2014 at 01:19

Hi Julie, good to hear calm waters for a while. No news really can be good news! Long may it continue. Let's hope for good news on the PSA I'll be thinking of you!

User
Posted 05 Sep 2014 at 02:51

Still up and awake Julie - best of luck tomorrow, I will be thinking about you both. Well actually, I will be thinking about your poor neighbours and wondering whether you are intending to paint the ride on a nice shade of grey & silver :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Sep 2014 at 06:21

Good luck guys.....I too will be thinking of you. ..I'm off to give my blood this morning.

Bri

User
Posted 05 Sep 2014 at 08:19

Good Luck today Julie hope all goes well, and you too Bri http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

I am off for Zolodex today should have had it three weeks ago http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif guess that's my first HT holiday, it was lovely http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Cant wait to see the silver and grey, your right about the latest thing but that was 1983

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 05 Sep 2014 at 09:12

You on about Julies decorating or your hair Si
Bri

User
Posted 05 Sep 2014 at 09:14

Wishing you all the luck in the world, Julie. Decorating is very therapeutic. I'm on my hands and knees carpet tiling for if and when Neil comes home. Have caved in and hope to get dog walking friend to paint the front room though instead of me doing it !

 

Lots of love, Fiona and doggies.

User
Posted 05 Sep 2014 at 09:17

I'd heard and read about the anxiety we suffer when it comes to blood test time, I think there is name for it isn't there?, and I have just started to experience it myself. Next Monday should have been my first 'proper' follow up PSA test after hospital but the appointment has been cancelled and I now have to go on 15th Sept instead.

 

Good luck with yours, I'll keep my fingers crossed for us both.

 

Steve

User
Posted 05 Sep 2014 at 10:33
Thinking of you guys.

Xxx

Life's a Marathon. Run in peace.

User
Posted 06 Sep 2014 at 00:11

Julie??? I am worried by the silence :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Sep 2014 at 12:18
SS I am looking forward to seeing this interior design fest ..silver and grey I cannot believe that you have not put purple or red in amongst that somehow.

Hope all went well with Ts check up, post soon or we will all be chewing our nails again.

xxx

Mo

User
Posted 06 Sep 2014 at 16:12

Laptop crashed last night so I couldn't update, sorry to worry everybody. OK so psa up to 66 , not the news we wanted to hear. I suppose in the back of my mind knowing how high Trevor's initial psa was and how quickly it had dropped could it climb back just as fast.?

Dr T seemed at a loss with no particular plan of action, to be fair we have always known that we don't have many options, she is adopting a wait and see , she wanted to do a 12 week review but I disagreed and she has moved to 8 weeks. Steroids were suggested but Trevor has been on steroids for his asthma for around 2 months now and we still had the rise. She also mentioned new drugs but did not name any so I am presuming Abi and Enza, she is reviewing his other medication to see if there are contraindications with these. So for now we wait and see what happens in 8 weeks, I have never been very good at the waiting game.

 

It is really difficult for me to ask direct questions with Trevor there, he has refused to talk about the cancer from the word go and I accept that is how he deals with it. Honestly I felt Dr T was fobbing us off and was in a way saying that's the end of the road. Deep down I think Trevor thought the same thing.

 

Its time like these that we need TG to pop up and say something very sensible and meaningful. Like pull your socks  up girl and soldier on. Life is for Living.

 

Bri I have fingers crossed for you, Steve psa anxiety is called squeaky bum time.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif and Si (what holiday) I thought you had just been.

Mo, 3 RED cushions in the lounge and large red rug in the kitchen covered in Cocker Spanielshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Thanks to all for thinking of us. X

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Sep 2014 at 11:01

Hi Julie,

Sorry to hear about Trevor's PSA rise, but in your world 60 is a drop in the ocean. As long as Trevor feels good then bugger the PSA.

Cant wait to see the new designs battleship grey sounds ........... well nice http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Just finished my 3 week 1 day HT holiday and i felt magic, Nothttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif will have to keep a close eye on the dates in future cant start feeding Mr cancer.

We all send our love and the girls send there love to the dogs, Sorryhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif they want to know how many you have now.

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 Sep 2014 at 11:52

I wouldn't panic yet, there is always the possibility that this rise is a blip and is the aftermath of that missed infusion in June.

I have been trying to search back to see which member it was that posted with similar complications to Trevor but it is hard to search for anything specific on this new platform if the posts are probably in the archive section. I will keep searching. Fact is hon, if they said he could have Abby-tabby but there is a risk it will make his heart worse, is that really a risk? I understand why medics might be averse to trying something that could have consequences for other ailments but weighed against the risk of doing nothing, it might be a no-brainer.

Did you see the wonderful nurse while you were there? Did she have any words of wisdom?

Even if I am talking bo****ks about the missed Zometa, perhaps telling Trevor that is probably all it is might just give him a bit of peace of mind.

Battleship grey and dog hair sounds lovely x

Edited by member 07 Sep 2014 at 11:53  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Sep 2014 at 13:41
Hi Julie

Yes that rise is a worry, it's probably proportional to our worry at reaching 5 as John's PSA tends to be low and Trevor's was massive. Getting it checked in two months is a good idea though 6 weeks would have been better. I can't understand why anyone would consider leaving that for 3 months. Well done to you for fighting that battle and winning. I think they will check his various meds and then decide what the next step is, it's not going to be simple with someone with Trevor's medical history.

I doubt they will do nothing at all, has he even had Casodex added yet? Sorry for not remembering. John remains on Stillbestrill so that's another possibility.

Loving the sounds of battleship grey, it goes great with brown lino from memory.....

Big hugs Julie

Love Allison xxxx

User
Posted 07 Sep 2014 at 13:46
Hi SS the rise in Trevor's PSA is not what you wanted or needed to see, however it is still good by comparison. The other drugs might actually be some of the older HTs, Like Lyn I have been trying to find the name of one I am thinking of ..Devonmaid's John is on it and doing well. I suspect Abby may be a risky option it has a whole list of meds that are contraindicated and some of them are everyday drugs ike statins. My answer to that though is are the statins being taken for a life threatening illness or just as a precaution in which case ditch them and have the Abby. I was very surprised when I watched the last Snuffy video about Abbi at how many doctors and pharmacists are unaware of this. There is now a lot of evidence that shows it is a brilliant drug and can have amazing results for those it suits.

Enza also has some issues it is classed as a "chemo" drug by hospitals and nurses do not handle it without gloves given in a little pill pot to swallow without touching (a feat in itself whe each dose is 4 horse tablets) etc. The evidence for that drug seems to be that it is being prescribed too far down the line and should be given sooner. If you are worried about pushing for answers because of T ask to have a quiet word on your own.

Catch up before Saturday my firend xxxx

Mo

User
Posted 17 Sep 2014 at 20:44

Lyn thanks for reminding me of the missed infusion, I had forgotten about that. As you say it may have nothing to do with the rise but Trevor was immediately lifted when I mentioned it.

Our lovely urology Nurse only works Tue-Thur and our appointments have been moved to Fri so we didn't see her but I have left a message saying that I want Ts alp and T levels phoned over. That was Mon I left the message and so far nothing, so I will be ringing again in the morning. Thanks to PRO-MO for the suggestion.

Alison, Nanny, I love it. Casodex was added last year so we have already used that option.

News front the ride on is now fixed again, it spends more time at the pig farm (that's where our ride on fixer man lives) than it does in our barn.

I have just realised where the silver grey inspiration came from, I just caught sight of my self in the mirror, OH NO it's my hair.

Love to all as always.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 18 Sep 2014 at 00:42

Have you not heard of hair dye?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Oct 2014 at 00:25

Well here we are nearly that time of year again, the nights are drawing in and I thought today maybe I should put up the xmas tree. I know what you are all thinking (is she mad it's only Oct) the truth is xmas makes me feel good. It reminds me of my childhood when everything was ok with the world, magical times. OK thinking back they weren't always that magical there was the time that my Dad left the Turkey in a phone box on Xmas Eve (he had imbibed a little too much Xmas cheer) and we ended up with Mum not talking to Dad and a fry up for xmas dinner. Yep magical. So that's it the tree is going up.

We had the annual visit from Trevor's American and Canadian cousins yesterday, know I don't want you to think that I don't enjoy there visits on the contrary it's lovely to see them but they do seem to have a very maudlin preoccupation with death. The whole 5 hr visit was spent telling us who had died, who is just about to die and who has taken out a funeral pre-payment plan, lets just say that tact isn't there middle name. Of course to some this would sound very depressing until you picture the scene  of 5 very elderly black ladies sipping tea , eating Ginger cake and occasionally farting. At one point I thought they were going to break into song and give the old reggae rendition of HIM KICKY BUCKET.

There is a point to this story apparently 2 of Trevor's 5 half brothers have died of pca so this is not looking good for the genetics. More reason for the boys (Trevor has 5 sons ) to get early testing. Trevor never met them so he wasn't upset just shocked. Yesterdays visit could explain Trevor's reaction today. He had his appointment for his Zometa and came back visibly shaking apparently he was kept waiting longer than usual and this probably gave him too much time to think. Our lovely Urology Nurse called him into a side room (this isn't normal practise) she said she wanted to speak to him privately , he assumed she was going to give him bad news and nearly fainted. In fact it was to discuss my request for ALP and Testosterone to be added to his next psa test. She rung tonight to check if was OK, so she was obviously worried about him.

So to back track when I rang to get Testosterone and ALP level results his ALP is 73, I know this is within normal limits (here I go) but it still seems on the higher side of normal , or is that me just over worrying. Answers on a postcard please.

Apparently T levels are not routinely checked and when I asked why they seemed confused as to why I was asking. It is going to be added to our next psa test . I can't believe that it is going to be added just because I have requested it. When I spoke to our Urology Nurse tonight she had read Trevor's notes and it seems the next course of action is to drop Bicalutamide and then this can be reintroduced at a later date. I am needing help understanding this guys so again answers on a postcard it seems to me she has rumaged around in the tool box and come up with a screwdriver.

Next visit on Nov 7th 

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Oct 2014 at 16:22

Hi Julie and Trevor,

Sounds like that was a very long five hours! : )

I can't advise about treatment here, but I can add to your comments about requesting various tests to be added every time Trevor has a PSA blood request form.


For ages now I've had to ask for Testosterone and Bone profile to be added to the routine PSA test list.of bloods.

Why are these nurses/doctors always so surprised WHY we ask?


I would say I AM SURPRISED THAT THEY ARE SO SURPRISED.

Isn't it vital that we watch testosterone along with PSA, and need to see the Bone Profile results to check our ALP?

I agree with you totally. It's a good thing we take the initiative and tell them exactly what we want on those request forms, but isn't it a shame that we have to tell them in the first place?

All the best,


George

User
Posted 11 Oct 2014 at 19:27

Hi Julie,

 

Sounds like they want to give Trevor a break from Bicalutamide and its side effects for a while. Using the anti-androgen on an intermittent basis is not a bad idea. Eventually it starts to work against us & using on & off may postpone that happening. Others say stay on it as long as it works for us. It's just different opinions.

 

The serum T. level is often a bit higher when on Bicalutamide as it blocks , not stops.

 
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