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Next Treatment Please

User
Posted 19 Jul 2019 at 22:38

XXXXXXXXX

 

Barbara x

User
Posted 21 Jul 2019 at 07:47

Thinking of you both, xxx

User
Posted 22 Jul 2019 at 08:30

Thinking of you both today Devonmaid x

User
Posted 22 Jul 2019 at 21:46

Hi my friends

Well things weren’t great today, the scan showed severe deterioration in the existing mets, the black in the lower spine and pelvis looked dreadful, no wonder the pain is so bad and he is so unsteady, in fact it’s a wonder John can still stand up looking at what’s going on. The CT scan was ok, some kidney cysts and diverticulitis but who cares as the PSA has doubled in a month and the oncologist said that she feels he is too unwell for cabazitaxel but did give one month more of Enzalutimide with dexamethazone to improve appetite and energy. After that she expects no further treatment and a quick exit. The key thing being the doubling in a month. The reason she was willing to extend the Enzalutimide was because the PSA hadn’t risen to the starting level yet, which was kind of her. John’s PSA has never been massive, 99 being the highest and now 45. Given what I saw today it’s surprisingly low but that’s the way its always been with him. 

Of course, I was very tearful, John was not, he was ok, brave and amazing as always. I did come away to Bradford and spent a long motorway drive trying not to think about today. I’ve left him with our daughter and the grandkids, in safe hands. I actually think a couple of days away for me is a good thing, I know when I go back I will have finished this job and will be refreshed and ready to face what comes next. I expect the next month to be filled with as much fun and joy as we can manage. What comes after that I don’t know. Knowing John he will confound expectations. I truly hope so, although he did say he hoped it would be quick and I do understand that.

with love

Devonmaid xxxxxx

 

Edited by member 22 Jul 2019 at 21:49  | Reason: Not specified

User
Posted 22 Jul 2019 at 21:57
Heart wrenching to read, I have shed a few tears for you. What a warrior John has been; I hope that the final stage is comfortable rather than swift, if that is at all possible, and that you at least get the rest of the Summer.to create memories ... I guess even with a prediction of a swift parting, that doesn't mean immediately after the dose of enza runs out?

Being in Bradford would take your mind off most problems though :-/

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

User
Posted 22 Jul 2019 at 23:58

Dear DM ,just want to say I’m thinking of you .
Xxx
Debby x

Edited by member 23 Jul 2019 at 01:57  | Reason: Not specified

User
Posted 23 Jul 2019 at 00:40
Tears flowed here this morning for you and John, dear DM. Such a hard message to hear I know. I'm hoping they can keep the pain under good control for him and I know you have good hospice support which should ensure that. And I am wishing you both some time for fun, new memories, but also some time to reflect on your life together.

Keep blowing off steam here as much as you can. Sending virtual hugs across the waves xxx

User
Posted 23 Jul 2019 at 06:44
Hugs. At least treatment for another month. Just hope they can keep pain under control.
User
Posted 23 Jul 2019 at 07:21

Hi Devonmaid

So sorry to hear your news, even though expecting something like this it is still I big shock when told about it, I hope you can make some good memories and John can get some quality time with you all. Have a enjoyable time in Bradford. big hugs xxx

 

barbara

User
Posted 23 Jul 2019 at 12:59

Thinking of you and wishing you a time of love and sunshine. Do whatever you can to make each other happy and have fun with those precious grandchildren. I pray that you will have longer than you think and that you will have lots of support. X

User
Posted 23 Jul 2019 at 16:22

Thinking of you both.

Sending hugs,

 

Ido4

User
Posted 23 Jul 2019 at 18:44
So Sorry to read this news ,

None of us oldies will escape this

Hugs Barry

User
Posted 23 Jul 2019 at 22:25
(((((((HUGS))))))))

Please have a lovely summer together.

Bri xx

User
Posted 24 Jul 2019 at 07:18
Take care both.

Keep the Faith

Love and hugs.

J.

User
Posted 28 Jul 2019 at 22:03

Just a brief update from me. So we’ve now done our DNR form and have also said that John will no longer have any acute admissions to hospital or IV antibiotics. He is getting weaker by the day, although the steroids are helping with some energy, at least he isn’t asleep all day. I’d say the pain is increasing and spreading but isn’t yet unmanageable, I’m hoping it stays that way. I don’t think he will go out again very much as it’s too difficult now, though we have booked a family meal next Sunday, I hope we can make it. It’s been a rather traumatic week but my adult children (girls) have been magnificent, tearful but very helpful to us both. We’ve all been tearful of course, but somehow our military black humour often surfaces and it helps. I went off to Bradford for work and yet again it took seven hours to get home to Swindon, why oh why, it’s mean to take three and a half but I’ve yet to make it under seven by car. It was a good thing really, our daughter looked after her dad and they wept together and talked and laughed and I had a couple of days away from it all and it was strangely an altogether good thing. The weirdest thing is I have now worked seven straight days, fourteen hours a day the last five (from home), the longest stint I’ve worked since 2010. Why now I wonder? It’s been quite helpful to me really as it certainly stops me dwelling on it all. 

The hospice nurse has explained many things to me and I’m grateful for their care, the GP has said he will come out to visit us (shock!) so I know that we are in the final stage, even if I didn’t know already.

I'm rambling, so I will sign off now. Just wanted to let you all know we are all currently ok, if sad but as always (well nearly) wondering how lucky we have been to have for nearly nine years out of this bloody disease.

with love

Devonmaid xxx

 

User
Posted 28 Jul 2019 at 23:19

As you know DM I don’t very often drop in on the forum these days but have been silently reading and watching from behind the scenes .

my heart goes out to you and John in what is know such a sad time in your journey, I will always remember your kindness and help in those terrifying early days of Trevor’s diagnosis and I will be forever grateful to you for that .

i tried to locate the comfort blanket for you but couldn’t find it but to be honest the last time I saw it , it was filthy covered in tears / chocolate and wine .

i will confess to not being much of a knitter but have managed to knit you a super duper huge comfort blanket big enough to wrap your whole family with love . 

It will arrive am tomorrow by DPD . Xxx

BFN

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Jul 2019 at 06:36
love and hugs
User
Posted 29 Jul 2019 at 06:50

Best wishes and hugs to all of you xxxx

User
Posted 29 Jul 2019 at 10:41

I'm sad and sorry to read this update Devonmaid.   The one comfort I had with dad was that his pain was well controlled.   I hope this remains the case for your John.  I'll be thinking of you both.  Take care xx

User
Posted 29 Jul 2019 at 13:01

DM 

Ramble all you like, lots of love and hugs. Remember to look after yourself. 

Thanks Chris

 
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