Advanced prostat cancer part 2

OMGosh so I don’t get many notifications these days so I was a bit surprised when checking my emails to find this 

i am a great believer in fate as it’s almost a year to the day since my last post and here I am back on the train !

So 3 years since Trevor left us , 4 in Nov and what are we up to , so buckle up guys here we go .

Firstly I’m thinking I need to change that avatar 😂, secondly I’m still known as the Cocker Lady ( sorry Lyn was that your Tea gone again ) 😂 for all newbies that’s cocker Spaniels ie dogs 🐕 , not nearly as much fun as the first connotation.

After 12 long and very hard years I have been successful in gaining planning permission so I can now relocate back home to Essex with my family and friends, I can’t express enough how tough it’s been here cut of from my support network . But Hey Ho Silver I’m Essex bound in a few months 🤗.

Ive been a bit reflective over the last few weeks as the move draws closer and what do you know up you all pop ,

The forum was my go to place for 5 years and I don’t think anyone realised how important it was to me , I don’t think I realised in the beginning, I really did think it was going to be a short pop in get some advice , you know the kind of thing ! OH by the way my husband has a psa of 13000 does anyone think this could be serious.

What do you know yep it was seriously serious, Trevor himself never wanted to join and that was ok he dealt with his cancer in his way after all it was his cancer .

I on the other hand needed knowledge, information we all deal with things in different ways , I started reading posts from other members , posts that touched my soul so many men who are now long gone but who left an inspirational legacy on the forum ( I’ll leave Lyn to name them ) . 

So in those early days amidst all of the fear and panic I was reading those posts which were so brilliantly written and they had a strange calming affect on me even though none where good outcomes so not experiences of miracle cures , I had a calmness and a kind of acceptance although I don’t think that is really achieved until much later .

Thats when I decided for a few reasons the first reason being totally selfish that I needed to document Trevor’s journey ( totally selfish ) that’s what I needed but the second reason was to maybe give back what the forum had helped me with and that was a coping mechanism.

And OH boy did it help me cope , the only way I could write my posts was from the heart , and I needed it to be with my personality so nothing fake a tell it how it is with my sense of humour, maybe not everyone’s taste but I wanted to chart Trevor’s journey and leave something written a warts and all description .

All of time I was posting I was very aware of how my posts could potentially affect others , that brings me to my 3rd reason for documenting everything, I wanted to share that it’s ok to be up , it’s ok to be down and all of those feelings in between . 

I never thought that 3 plus years on that people would still be reading and finding comfort in our story . 

Much love to everyone xxx

Edited by member 07 Jul 2021 at 19:58  | Reason: Not specified

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

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

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

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

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

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

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

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

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

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

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

A Happy thread a continuation of life Trevor’s latest granddaughter has been born . And named C C Boothe . CC is named after her grandmother, Trevor’s mum who came to England on the Windrush .,Trevor’s mum was Clarice Cleopatra Boothe and for short always introduced her self with a white gloved Hand shake as CC Boothe .

prostate cancer ended his life but did not end his legacy .

BFN XXX

[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

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

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

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

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

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

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

*****

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

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

For Leila x 

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

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

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

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

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

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.

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!

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

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

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

Thank you so much.

Love and very best wishes

Yvonne

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

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

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

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

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

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

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

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

The force is with you

hugs xxxxxx

BFN

Julie X

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.

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.

I really want this post to reach out to others that have young children and the worry that how a cancer diagnosis of a parent affects them . 

I was terrified for how Trevor’s diagnosis would affect my boys at the time of his diagnosis they where 14 and 9 , babies really compared to lots of others , but also I am sure many other men on here have had similar ages and gone through the heart ache and worry that we  did .

i have to say it wasn’t easy in fact I’m not going to sugar coat it Trevor had 5 years after a terminal diagnosis that was horrendous for my self and my boys and of course Trevor  ( every thing is documented if you have the time to look back on my posts ) . Most of posts I tried to make it as light hearted as I could in the most of our dire of circumstances.

But and a Huge But here we are today  almost 5 years on . James has achieved a 1st and  and his Masters in Physics and Astro Physics, Trevor would be so proud of his boys .

My message is although sometimes our children can go through the harshest of times they are more resistant than we think and can and do amazing things regardless of the struggles that life presents .

my message would be have faith in your children they will survive life’s knocks and tragedies ( I was terrified that mine wouldn’t ) but here they are grown men ( almost ) 

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

You are both such strong people. All the best Sandra

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

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

xxx

Mo

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

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

Si xx

Fingers crossed for you.

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

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

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?

thinking of you both. X

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

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!

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.

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

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

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

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

Xxx

Mo

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

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

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

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

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

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

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

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.

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

Arthur

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

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

Good luck, tomorrow.

Paul

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

GOOD LUCK.

Carol x

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

Paul

Hi Julie & Trevor,

That's really great news!  Congratulations.

 Long may it continue.

Have a great weekend.

 Steve x

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

Love to you all xxx

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

to borrow your response to me SS 

xxxxxxxxxxxxxxxxxxxxxxxYAYxxxxxxxxxxxxxxx

Mo

back on tera firma

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

Excellent news, have a great weekend.

dave

Your posts make me laugh out loud.

Lots of love

Allison

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

What an encouraging post

Best wishes

Arthur

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

Trevor & Julie

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

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.

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.

Julie

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

Paul

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

Fascinating info Julie. Must have been a great reunion.

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

Xxx

Mo

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

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

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

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

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

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

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

love the new avatar

Best wishes for Monday

Carol x

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

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

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

Fiona. x

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

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

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

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

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/

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

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.

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

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

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.

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

Not such good news Julie.

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

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

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

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

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

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

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

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

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

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

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

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 !

So glad to hear your news, Julie. The pup Zanzi says Hi to your lot ! x

Fiona.

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

Sorry to read this Julie. X

What gave it away

Carol

Was it the bad grammar

Edited by member 31 Jan 2016 at 18:01  | Reason: Not specified

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!