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Advanced prostat cancer part 2

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User
Posted 07 May 2017 at 01:15

Lovey, T is superhuman, no doubt about it, but I am pretty sure that it is your grit and determination that keeps him going .....

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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 10:06

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 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 09:53

Hello Julie,


to reach 4 years of suffering with this illness, is absolutely amazing.


it is yourself and your family, who have rallied around Trevor; such love is what keeps him going. And Trevor has such a strong spirit within himself, and determination. Long may this continue.


Plus we are now being blessed with some lovely warm weather.


 


Frank.

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 08 May 2017 at 20:55
Many best wishes to you both on this achievement. Wishing strength and the will to make as many more as you can.

Bazza
X
User
Posted 28 May 2017 at 01:13
So what's been happening in our household I am a bit late updating because we had a bit of a drama. I know what you are thinking ( not another one ) it was the dog this time and not Trevor.
Little Lilly delivered 3 puppies at home all was going well then she got into difficulties of course it was 2am ( it always is when you need an emergency vet ) so I had to drag Trevor out of bed and we did the Nee Naaah bit ( that's code for a pet ambulance) πŸ˜‰
3 more healthy puppies were delivered by C Section the one that got stuck didn't make it . Mum and babies are all doing well know 2 weeks on .
Trevor stayed in the car and slept while I paced up and down inside the vets like an expectant parent.

I always plan in my head to be organised and READY for any emergency and by READY and I know this is really vain but I actually plan my outfit in my head it's nothing fancy just dressed will do and wearing shoes would be good .
Of course that is never how it happens so wether it's A&E or emergency vet I am generally unwashed , hair not brushed , wearing my red fluffy dressing gown ( the one with the hood and the egg stains ) and a pair of werewolf slippers. πŸ˜‚

I am seriously thinking of having an emergency clothing bag by the door πŸ˜„ Might even put some lippy in . I know all of you guys are reading this and thinking what is she rambling on about trust me it's a girl thing .

So scores on the doors !
PSA down from 4086 - 3804 I know still huge numbers but flipping heck it's a drop and Trevor's face lit up the room. I do believe that Abbi is working it's keeping a lid on it. It has never driven it down to what we had hoped but and you guys know I am famous for my buts I honestly think it is doing something .

The icing on the cake !
ALP down from 201 - drum roll ! To 140 . We started Raduim with ALP at over 400 so we are really happy with that ( for those that don't know ALP is measuring activity in the bones and 140 is pretty much near normal.

Time for a song I think it's got to be sister act OH Happy Day !

We are still waiting for the report on the heart tests apparently a letter has been sent to our gp so we are chasing that up but I am assuming because there hasn't been a follow up appointment that there isn't a major issue . Fingers crossed symptoms have settled .

So we are ticking along still driving and pretty much pain free still gardening in fact he was cutting the grass this morning with the flymo in the rain , I know I did say do you think that's wise , his answer was if Heart attacks , strokes and cancer can't get me then a little bit of rain has got no chance . Men 😀

The biggest problem at the moment apart from him cutting grass in the rain is the osteocrenisis I really don't want to put any one off having Zometa it worked brilliantly for us for ages and what Trevor has as a side affect is so rare .

He has to syringe salt water in the gaps in his jaw after every meal and nothing is stopping the continuing abscess in fact 3 weeks ago it has burst out of his skin on the side of his jaw this is continuing to leak puss. It goes down and then within days it comes back again. He has been on pretty much constant Aunty Bs . It is going to be back to the dentist after the bank holiday . We were warned that the healing process could take a long time .
So at the moment he is back on soups / if any one has unusual soup or soft food recipes I would love to hear from you.

BFN
Julie X



NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 May 2017 at 09:28

Thank you for the brilliant update Julie.


I'm so pleased that the treatment is doing it's stuff, although it must be grim for Trevor with the osteocrenisis . What a bugger eh.


I can see where Trevor is coming from with the comment about mowing in the rain and his various problems but I'm pretty sure that electricity and water don't mix haha (which I am sure he is completely aware of)


Looks like he was sticking his two fingers up to fate and saying "Go on, I dare you!"


As for the puppies and the emergency bag, it's an excellent idea. Many years ago I got carted off as I stood, including the manky slippers I had been in and out of the garden in and left it to John to bring me in stuff like nightwear and soap bag. Of course, nothing was where he expected it to be and you wouldn't believe the mishmash I got. No soap bag for a start, just a flannel and a bar of soap in a clear plastic bag. Oh the shame!! We accidently left the slippers behind when I was allowed home and I was too embarrassed to go back and claim them.


After that I packed a small suitcase with everything in it, including new slippers, fancy nightie. a new cotton dressing gown, new soap bag, all colour matched.


Of course it never got used or needed for years and years and by the time I could have done with it, I'd got fed up keep dragging it out so dismantled it all and used it for everyday.


I should have left it where it was because in the end it would have been handy.


Do it girl, do it. You know it makes sense !!

Edited by member 28 May 2017 at 16:52  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 28 May 2017 at 10:56
Ahh Julie, you always manage to make me laugh. And you just described me to a tee (unwashed etc) when we was at what is becoming one of our regular 2:00 am trips to the hospital. great news that the meds are doing their job for Trevor. And pleased to hear mommy and pups are ok. We have retrievers and I know all about the nee narsπŸ˜‚
Best wishes
Yvonne
User
Posted 28 May 2017 at 10:59

Great news. I hope the mouth problems can be resolved.

User
Posted 28 May 2017 at 14:34

This is great news after a difficult week for me (see my entry) to hear such heart warming news is just wonderful.

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 31 May 2017 at 10:09
Julie

You need to write a book, keep going gal.

Thanks Chris
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 16 Jun 2017 at 21:47

Perhaps they could also add Our hero!!

What lovely boys you have. I hope Trevor gets some relief, which in turn I know, will ease your burden even if only a little bit.

Father's day in hospital may not be the ideal but it will still be very very special.

Enjoy it all as much as you can

We can't control the winds - but we can adjust our sails
User
Posted 16 Jun 2017 at 22:07

Oh love, I am sorry to see this. You are on my mind, and I will be thinking about your beautiful boys and how pleased Trevor will be with his t-shirts on Sunday xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2017 at 22:12
Happy Fathers' Day to you all - even if you have to have it in hospital

Ulsterman
User
Posted 16 Jun 2017 at 22:32

Oh Julie I'm so so sorry to hear what a tough time Trevor is having, and therefore what a tough time you and the boys are going through. You are all so astonishingly courageous but it must be taking such a toll.


Hope you still have the soggy comfort blanket - if not I'm knitting another one right now. Will be with you shortly, along with pile of love and hugs and appreciation for all the support you have given me and all of us on this forum.


Masses of love


Eleanor/Ruth

User
Posted 17 Jun 2017 at 12:14

Bu**er! If it is bone met pain hopefully they can get it under control but shame Abby been ditched. Thinking of you all on this Father's Day weekend. Hope he can enjoy his t-shirts and his family and some home cooking.

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 doing the 600 mile Camino de Santiago May 2019

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 18 Jun 2017 at 00:05
Julie

You've been through enough without this. So sorry to hear what has happened.

Ulsterman
User
Posted 18 Jun 2017 at 01:30

I hear you - you are talking to the woman who kidnapped her mum from a hospice and took her home to die with some dignity.

What if anything can we do to help you?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Jun 2017 at 08:26

I, like Lyn, wish there was something we could do to help you but I hope that just knowing we are here is supportive.

Thinking of you all, on what should have been a very special day for Trevor

We can't control the winds - but we can adjust our sails
User
Posted 18 Jun 2017 at 11:32

Oh Julie , you know I'm gunning for you both xxxxx

User
Posted 18 Jun 2017 at 12:08

Thinking of you.


Hugs


Eleanor/Ruth xxxx

User
Posted 18 Jun 2017 at 15:41

Hi Julia,


Really sad to hear how things are going for you.  It's not fair and not what you deserve.


I hope things get better for you both. 


I wish I could help more.


Steve x


 


 

User
Posted 18 Jun 2017 at 18:07

I'm so sad to read this. Since I was diagnosed the out patient care I have received has been excellent. I didn't comment on it at the time but the 6 days and 5 nights I spent in hospital being treated for pneumonia left me feeling dissatisfied and disappointed. So much so that I'm wary of being admitted again. However, if I am then I intend to be more assertive and I think if you are assertive then you will be doing the right thing by Trevor.


All my love to you Julie.


David

Edited by member 18 Jun 2017 at 18:51  | Reason: Not specified

User
Posted 18 Jun 2017 at 18:26
Julie

Nothing can be said except to send my love. Keep fighting the system you two.

Bazza
User
Posted 18 Jun 2017 at 19:23

Lots of love at this difficult time

User
Posted 18 Jun 2017 at 19:58
Lovely Julie
As you know I don't come here often these days but felt compelled to come tonight and now I know why. My heart goes out to you all, I wish I lived closer as I'd run you up to the hospital. You may remember we had a hideous experience when John went into retention, and this has been at the heart of so many problems since. Stand up to them, I know everyone loves the NHS and so do I but it is not without many faults, particularly now. My sister (who passed away earlier this year) was never washed until she was dying and then it was rubbish as she was too ill to be messed with.

Have you got a hospice nurse anywhere to fall back on?

I'm thinking of you all love

Massive love
Devonmaid xxx
User
Posted 18 Jun 2017 at 20:48

Dear Julie


Have sent the comfort blanket along with a comfort duvet and matching fluffy slippers. Hope it arrives safely (I had been hogging it for a bit I'm afraid). You no doubt feel way past smiling but in the midst of stress, distress and hopelessness, this documentary actually brought a smile to my face last week: ITV The Real Full Monty - massed buttocks clenched to raise awareness of prostate cancer. Might just cheer you for a short while. Do hope so.


Much love


Eleanor/Ruth


xxxx

User
Posted 18 Jun 2017 at 21:36
So sorry that you are both having added problems to contend with , sending you both my strength to add to your already super human abilities.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 19 Jun 2017 at 08:36

Good luck today Julie. Thinking of you.


Love


Eleanor xxx

User
Posted 19 Jun 2017 at 21:43
Not sure were to go with this post so I will just ramble on in my usual way.
Arrived at the hospital for 10 am only to be told visiting was 2 -8 , of course I know that beacause there are signs everywhere that stipulate that fact. So I preceded to ignore them and give Trevor a drink and his humongous pot of tablets that were just left on his bedside table.

My intention was to kidnap him but the more I looked at him I knew this wouldn't be possible he is very confused and unable to stand unaided. So I decided to wait until Drs had done there rounds. Trevor has gone downhill so fast he is not aware of what is going on around him. So I waited and I waited the ward sister kept assuring me that the Drs would be there soon.

I got fed up of waiting and whent and found the ward sister and mentioned that as Trevor is unable to walk to the toilet he is incable of weeing and probably hasn't weed for a few days . His tummy looked to me ( bloated and full of fluid ) but I don't have a nursing degree ! So I mentioned this to the head nurse and she arranged a scan of his bladder . Sure enough 8 litres of fluid so it doesn't take the brains of an Arch Bishop.

At 2.30 the Drs finally make an appearance he Obi Whan Kanobi agrees severe fluid retention and yes I did say I told you so.

Up shot is Trevor is on MAX morphine dose other than a driver , he urgently needs a catheter but this may not be possible going the direct route so may need a SPC.
His team want him to sign DNR . The Drs Obi whan and his assistant think he may not make the op

I have been told by his Drs just how week and poorly he is I didn't need to be told this I can see how quickly he has deteriorated. They are predicting weeks at the most and could be less.


My wonderful man who has fought this hideous disease for 4 years is know at the mercy of a very poor hospital and a severely laking nursing staff .

BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Jun 2017 at 21:52

Julie my heart breaks to read your update. What a mess coupled with what appears to be incompetent staff. I don't have any pearls of wisdom and hope that they can get their act together and find some solutions. Meanwhile I am thinking of you and Trevor and hope that something can happen. I wish I could do more to help you.

User
Posted 19 Jun 2017 at 22:41
I just felt I needed to say how much all of your messgas and replies have meant to me over the years throughout our ups and downs . It has been a long hard battle but withought you guys I would never have made it this far.
When I look back to my first cries for help so many are not here to answer they are gone but not forgotten .
Love you all thank you
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Jun 2017 at 22:46

Oh Julie. I'm so so sorry. Nothing I can say is even remotely adequate. All I can do is send my love and affection and thoughts and I do so with all my heart.


Love


Eleanor


xxxx

User
Posted 19 Jun 2017 at 22:53

Julie I feel your pain and helplessness. Is there a local hospice? Or an alternative hospital? Would a phone call to Macmillan Nurses or the nurses on this site give you any help? Both of you need care and Trevor doesn't seem to be getting what he needs at this time. Sorry I haven't got any answers but send both of you lots of love.

User
Posted 20 Jun 2017 at 00:13

I wish that you had time to read the riot act and get him home where you can care for him properly but perhaps that will not be possible now - shocking that in one way he has outlived every prediction tenfold but then the end-stage has come so suddenly. Do you have people that can look after the boys so that you can spend the time you need at the hospital? You might have to be there to make sure he gets the meds at the right time and all that stuff. Is he eating anything at all and is he still drinking?

So, so sad for you. T will know that you are there, hearing your voice will soothe him and feeling your touch will give him reassurance. You have been as brave as a mountain lion for 4 years and now I am sending you extra strength; dig deep Julie and give them hell to ensure he is as comfortable as possible xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Jun 2017 at 06:35

Julie I am so sorry. Since losing Mike in February I only visit the site occasionally but feel I have to check in. In my lowest times you always made me smile with your funny stories about your wonderful Trevor. Is there any chance of moving Trevor to a Hospice? It is so hard for you to see the man you love not being treated with dignity. Please look after yourself also. You, Trevor and your boys are in my thoughts and prayers

With love Molly xxx

User
Posted 20 Jun 2017 at 07:13
Julie

All my love and best wishes to you.

Ulsterman
User
Posted 20 Jun 2017 at 07:30

Hi Julie


i am so sorry to read your latest news, if you need me to help with the dogs or giving lifts just let me know.


Hope you manage to get Trevor comfortable.


thinking of you and the boys


Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 20 Jun 2017 at 07:36

Julie I just want to add my love to all the other posts. I can really relate to what you are experiencing with the hospital: My oh went intonkidney failure lrecently and had to spend 8 days in hospital. After an incidence where they were 3.5 hours late with his medication I arrived at 7 Ithe next morning and stayed there. I have him home now. We shouldn't have to fight for dignified and proper care for our loved ones at any time but especially not at this most difficult time for you and Trevor but it seems more and more often we are finding ourselves in the battlefield that the NHS has become.
Stay as strong as you can for you and your man Julie.
Yvonne

User
Posted 20 Jun 2017 at 07:46
Julie, I am so sorry to read about how badly you are both being treated, I know I don't know you but you and Trevor have all my love and thoughts right now. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 20 Jun 2017 at 09:03

My love to you both and for your boys too.

I know you won't need any encouragement to raise a stink Julie, you'll fight tooth and nail for your man, as you always have.

Is it possible to get on to PALS and demand that somebody sorts this out, at least to give Trevor the dignity he so deserves.

I'm routing for Trevor, I know he is really poorly, I understand that, but I hope so much that he can rally enough for you to have a conversation with him. He will know you are there though so like Lyn says, he'll hear you.

Love and support to you both

******

We can't control the winds - but we can adjust our sails
User
Posted 20 Jun 2017 at 09:46

Look after yourself in all this Julie, I know that can be difficult. But if Trevor rallied you will want to be there for me.

 
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