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Next Treatment Please

User
Posted 03 Jul 2019 at 07:58

Thinking of you both, love Janet, x 

User
Posted 06 Jul 2019 at 20:41

DM


Sorry to hear you are both having a difficult time. Love and hugs to you both.


Thanks Chris

User
Posted 07 Jul 2019 at 11:49

thinking of you both.


Gordon ..  


 

Edited by member 07 Jul 2019 at 15:01  | Reason: Not specified

User
Posted 17 Jul 2019 at 21:10

Just a quick update, it’s our 43rd wedding anniversary today and I managed to get John to eat something nice, which was great as his appetite is poor and his tastes have changed so much recently. His pain levels are not nice, he’s now on 30mg of morphine every four hours and a 50ml fentanyl patch plus amitryptillin for nerve pain. The hospice and OT have been out thankfully offering help and guidance. We see the oncologist on Monday(can’t come soon enough as I prefer to know what’s actually happening rather than speculate). It’s a waiting game as usual, I’m hoping they might be able to do some RT, but it will depend on the calculation of what he’s already had. Other than that, I don’t know.


I will let you know what happens after Monday.


love Devonmaid 

Edited by member 17 Jul 2019 at 21:10  | Reason: Not specified

User
Posted 17 Jul 2019 at 21:24
Happy anniversary 🥂

Really hope he can have the RT. Good luck Monday

Bri xx
User
Posted 17 Jul 2019 at 21:53
As usual, you are managing to find the positives and blessings although I know that seeing J in so much pain is exhausting and distressing; sometimes, I don't know how you keep it all together as well as you do. Comfort blanket must be on its way to you, I think.

PS. Loved seeing your wedding photos on FB today xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jul 2019 at 22:02

DM


Happy anniversary to you both. Love and hugs. Chris

User
Posted 17 Jul 2019 at 22:55

Congratulations on your wedding anniversary and I am glad you enjoyed a nice meal. Wishing you all the best on Monday and hoping there will be something that can be done.

User
Posted 18 Jul 2019 at 07:42
I just want to echo what others have said. So pleased that you enjoyed a nice meal for your wedding anniversary. But I really do hope they can come up with something to help with the pain.
User
Posted 18 Jul 2019 at 09:03

Thank you kind friends, every day is special at the moment xxxx

User
Posted 18 Jul 2019 at 09:06
Happy Anniversary Devonmaid. Just wanted to let you know that I am thinking of you both. There is nothing I can do or say that helps really, but did want you to know that I think of you often, and check in quite regularly to see how you are going. Watching the pain is so hard, isn't it. And the wait until appointments sometimes seems interminable.

Crossing fingers and toes that they come up with something to help.
User
Posted 18 Jul 2019 at 11:28

Happy anniversary Devonmaid. Hopefully some RT can be used to reduce pain.


 

Ido4

User
Posted 19 Jul 2019 at 15:35
Happy anniversary and good luck for Monday. xxxx


barbara
User
Posted 19 Jul 2019 at 15:54

We went to get bloods done today, ready for Monday, it was so difficult as John seems really poorly and is suffering from sickness and can’t eat much. I called my lovely hospice nurse and she said that this could be down to too much calcium in the blood and recommended he take some of the anti sickness drug we had left from chemo (which has helped a bit). I am quite fearful at the moment, looking at his colour and general health. I’m off to Bradford again on Monday right after the oncologist visit (why have I done that to myself?), unless things are really bad, in which case I won’t go. I’m hoping for a plan but am very down hearted today, as are our daughters. In fact, all of us including John, have had tears today. It’s very hard watching someone you love suffer and be unable to do much about it.


not one of my best days, just letting off a bit of steam here as I do need to man up and carry on somehow, please bear with me.


love Devonmaid xxx

User
Posted 19 Jul 2019 at 16:31
Lots of love at this very difficult time. Just hope someone can come up with something on Monday.
User
Posted 19 Jul 2019 at 16:36
It must be so hard for you. Thinking of you. X
User
Posted 19 Jul 2019 at 17:00
As always sending hope and strength xx

If life gives you lemons , then make lemonade
User
Posted 19 Jul 2019 at 17:03

Sending love  to you both.

User
Posted 19 Jul 2019 at 18:43
It cant be easy for you both,
Hugs
Barryxx
User
Posted 19 Jul 2019 at 19:28

DM


Sorry to hear this, Love and hugs to you all.


Thanks Chris

User
Posted 19 Jul 2019 at 23:38

XXXXXXXXX


 


Barbara x

User
Posted 21 Jul 2019 at 08:47

Thinking of you both, xxx

User
Posted 22 Jul 2019 at 09:30

Thinking of you both today Devonmaid x

User
Posted 22 Jul 2019 at 22:46

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 22:49  | Reason: Not specified

User
Posted 22 Jul 2019 at 22:57
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 23 Jul 2019 at 00:58

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

Edited by member 23 Jul 2019 at 02:57  | Reason: Not specified

User
Posted 23 Jul 2019 at 01:40
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 07:44
Hugs. At least treatment for another month. Just hope they can keep pain under control.
User
Posted 23 Jul 2019 at 08:21

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 13:59

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 17:22

Thinking of you both.


Sending hugs,


 

Ido4

User
Posted 23 Jul 2019 at 19:44
So Sorry to read this news ,
None of us oldies will escape this
Hugs Barry
User
Posted 23 Jul 2019 at 23:25
(((((((HUGS))))))))

Please have a lovely summer together.

Bri xx
User
Posted 24 Jul 2019 at 08:18
Take care both.
Keep the Faith
Love and hugs.
J.
User
Posted 28 Jul 2019 at 23:03

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 29 Jul 2019 at 00:19

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 07:36
love and hugs
User
Posted 29 Jul 2019 at 07:50

Best wishes and hugs to all of you xxxx

User
Posted 29 Jul 2019 at 11:41

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 14:01

DM 


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


Thanks Chris

User
Posted 29 Jul 2019 at 15:41
I am thinking about you all - what an amazing family you are xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jul 2019 at 20:33

Thinking about you all. Love and hugs.


 

Ido4

User
Posted 29 Jul 2019 at 21:19

Always thinking of you both
Barry xxx

User
Posted 29 Jul 2019 at 21:29
Sending love and strength to you all as a family. Xx

If life gives you lemons , then make lemonade
User
Posted 31 Jul 2019 at 23:09
Thinking about you Devonmaid and hoping John's pain is being controlled as much as possible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Aug 2019 at 01:04

Hi all and thanks Lyn


its been a hideous day here, had to call the GP out as I thought John had sepsis again (I’m still not sure to be honest). He has been very confused today, GP says that it could be brain mets (I don’t think it’s that), the increased meds (patches now raised to 75mg) and morphine mix coupled with low sodium and high phosphate plus very high platelets (no idea why that is the case). He did give antibiotics as he likely has a urging infection, which also causes confusion. The girls came round and we spent the day as a family, not knowing if we would still be complete in the morning, we still don’t know and it’s  hard to sleep while John is so poorly. If he gets through, we have oncology on Thursday, district nurse is coming to do the bloods as I can’t face another hospital trip, I’ve no idea how we will get there on Thursday if we make it that far. 


The hospice have offered a hospital bed for downstairs as he can’t really go up and down at the moment, but I’m pretty sure we are going to put our own bed downstairs for his comfort. We have crazily bought a special chair (cost a fortune) so that he will be able to sit. I hope it arrives in time.


it’s a weird time, very sad but lots of laughs as well. I don’t know how long we have left together but trying to enjoy our time left as a family.


lots of love


Devonmaid xxx

User
Posted 10 Aug 2019 at 01:15
The big thing about having a hospital bed is that they have all the gizmos for preventing bed sores etc - if you move your own bed downstairs, is there anyone from district nursing / community physiotherapy / occupational therapy that is going to be able to come and move him regularly or provide at least some gizmos? Obvs not thinking that you would need those things right now but if he rallies and fights off the infection?

I would be tempted to cancel the oncology appointment or ask for a phone consultation - J probably needs a journey somewhere like a hole in the head. Bunker down together and let everyone come to you, my lovely friend xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Aug 2019 at 20:50
I am so sorry to hear this news about your John
Lots of Love and best wishs
Barry
User
Posted 10 Aug 2019 at 21:56

I will echo Lyn's point about using a hospital bed.
I went through this with mum, and she finds it much easier to get in and out of, because it has motorised height control, not to mention motorised head and knee support, and also a waterproof anti-pressure sore mattress (not the air pump type - I believe it gets switched over to that if she has to spend much longer in bed).

User
Posted 11 Aug 2019 at 12:59

My amazing superman has turned the corner today and is lucid again! The vile muck coming out of the catheter tells the story of what was causing his illness. For the first time in three days he’s not hallucinating and is coherent. Antibiotics seem to be working. I can’t believe it but am so happy for today. I know it’s a reprieve but it’s such a relief for now.


love Devonmaid xxx

 
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