Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

I'm nocturnal almost now, don't go to sleep till gone 1 most days.

I've forced myself to put the tree up today. Was wrapping presents last night with a few tears as that's always been DH job, I bought he wrapped !

Grief seems to come out of nowhere and slap you !

We're back from DH's first oncologist appointment but not much further on in some ways. He's to have an endoscopic ultrasound tomorrow to try and get a biopsy as the brushings when the stent was put in were inconclusive. The oncologist indicated that he would have 6 sessions at fortnighly intervals with Folfirinox, a review to see if it's shrunk enough to operate and if it has then surgery followed by a further 6 sessions. We didn't really go down the route of it not shrinking but the implications of that are pretty obvious so it wasn't necessary.

It seems pretty brutal, and I'm not sure yet if DH has grasped it yet, or whether he's choosing not to, but I'll leave that up to him. In himself he's a bit up and down and still in a fair amount of pain. I'm encouraging him to talk to his cancer nurse about getting the balance better but again, he doesn't seem that keen. I can't do all of his thinking for him, my head is full enough of my impending chemo, and I don't want to treat him like a child, but the helplessness is quite frustrating sometimes. We'll have to find a way to work it out, but it's hard seeing him in pain and reduced to an invalid in so short a time and I feel so helpless and am possibly badgering him a bit to try and 'make it better'.

So 2024 has been pretty shit, and 2025 is looking much the same, at least for the first six months.

@frostyfingers you have such a lot to cope with, and you're doing so well. I used to have a lot of conversations with DH's palliative care nurse when he wasn't there, they were really helpful in getting my head around what I could and couldn't do and sorting out my thoughts. She was also very skilled at getting him to be honest about his pain and in coming up with solutions. You might find the same if you can find the space for it.
Am I right in thinking that your own treatment hasn't started yet?
Hope tomorrow gives you some answers.

@MontyDonsBlueScarf Thank you, I do feel a bit like a swan - reasonably ok on the surface but floundering beneath. I had a blood test on Monday and am seeing the oncologist tomorrow, hopefully for the go ahead for my first chemo on 30th. I need to concentrate on me for a bit now, I think, as we won’t have any more info or results for DH until after Christmas.

My sister is being hugely supportive and I can share the difficult stuff with her thankfully, and my BCN has been good too so I don’t have to be too down when I’m with DH, or burden with him too much. I’ve also got his cancer nurse’s number so might give her a call.

I’ve never been a huge Christmas fan and I don’t think that’s going to change, for everyone who is struggling with it I wish you strength.

@frostyfingers DH went through endless brushings and biopsies before he was referred to a much bigger hospital where they got it first time. He was like your DH in terms of medical information, very much a 'not listening' type of stance. He was initially diagnosed with pancreatic cancer but after surgery (he didn't have chemo first, they went straight for surgery) we were told he had bile duct cancer and that it had spread.

My mum is sick now. I don't have much of a relationship with her due to childhood abuse and the fact that when DH was sick she was nowhere to be seen. She has never been there for me, didn't come to our wedding or to his funeral. I feel sad that she's sick (it's heart failure) but numb.

@CopperSeahorses That sounds tough, look after yourself.

I was told today DH probably has two months, he thinks he’s got a year, he also thought he was at home four weeks after leaving hospital the last time, it was six days.

I’ve twice been at a similar stage but he’s pulled through, but they say not this time. What he doesn’t know is when he next leaves hospital is he’s coming home to die. I’ve decided that I’ll battle through and keep him at home, the hospice think this is achievable and my elderly but super fit parents have said they will move in and help.

I can’t believe it’s happening. 15 years we’ve been on this journey, it’s only the last eight months it’s all gone wrong, he was playing golf in the summer.

im really worried that my current state of mind is not going to last, I’m calm ish, organised, and do a fair bit of silent screaming in the hospital loo. I just so wish those six days when last home had been over Christmas as they’ve said they doubt he will be stable enough to leave for Christmas.

My DH was in hospice over Xmas - tbh it was actually ok in the circumstances. We got him out the week after (he was there for pain relief but wanted to die at home) and we redid Xmas for him.

I held it together for us all as DH would have fallen to pieces if I'd cracked. Was one of the hardest things I've ever done but I'd do it again.

(((Hugs)))

@Hisredipad It must be so hard when he’s bounced back many times before. My dh battled on for 7 years but the last year he really deteriorated and had little quality of life. He never gave up though and somehow thought he’d still make it, even when he was bedbound. He went to the Hospice for a week but hated it and begged to come home. I brought him home and he lasted 6 more weeks. At the time I didn’t want to bring him home as I didn’t think I’d cope but I am really glad I did, as it was his final wish.
if you have a Hospice team they may be able to provide help and you should get support from the District Nurse team too. The Hospice arranged continuing health care funding for us due to dh’s condition.
All you can do now is take each day as it comes and try, if you’re able to do something for yourself over Christmas too x

I'm so sorry @Hisredipad.I hope you can find some special time together over Christmas.

Sending strength, courage and love xx

My Christmas wish is that we can be just as kind to ourselves as we are to each other.
I think sometimes we can be so focused on caring for others that we forget even that we need to breathe. To all the new people, I'm so sorry for the reason you're here. You're not alone and we get it.

I’m really struggling today. I’m away with the kids
for Xmas as I thought it would be easier but now surrounded by lots of ‘complete’ families (I know that’s stupid as families come in all shapes and sizes but it’s making me feel very vulnerable and raw. Love to everyone struggling

@Jollyoldholiday We did the same our first Christmas - the alternative, being at home without him that first year, would have been too much to cope with.
For me the realisation came with the awful traffic and getting so tired because he wasn't there to share the driving anymore.
Still we do have some happy memories of that Christmas. It was a beautiful place and self-care goes a long way.

Thanks @Willowkins. I still haven’t got my head round this being forever. My brain just won’t accept it

Of course not. Plus I hope there's not a timetable because I still haven't got my head round that either. Just bumbling along day to day seems to work for now.
I remember a dear friend of ours saying to us, long before MrW got ill: You two will be together for eternity - and us both laughing and saying: We only signed up until death do us part. I do know I need to come up with a plan for my future that's just about me but there's plenty of time.

Thanks @Willowkins I need to get more comfortable with day to day bumbling - I think waaayy too far ahead at the best of times

DH won’t get out for Christmas, maybe the new year but he’s had a hell of a day today, was having a coherent conversation with the oncologist and then had a seizure. I can confirm you can get eleven ten people in a small hospital room when required. (They were going to shock his heart but it naturally fell back into a good rhythm).

DD and I are packing up everything Christmas and going to a relatives home tomorrow who is closer to the hospital and has offered an invitation today. It means I can pop five mins down the road and eat my Christmas dinner and go back. I was there ten hours today, the plan was to pop in this morning see the dr and then pop off and do Christmas things, thank goodness I was awake this morning at silly o’clock and did most of my wrapping.

That must have been traumatic @Hisredipad I'm so glad you have support in real life

That must have been so horrible and scary to watch. Please make sure you are getting support in all this.

@Hisredipad Sounds so stressful. Is dh aware what is going on? I hope the hospital isn’t too bad, does he have his own room? So sorry he couldn’t make it home for Christmas

Hi, yes very aware of his predicament and surroundings, but also being grumpy about stuff that no one has any ability to make better, he needs to eat and drink but just refuses a whole host of stuff after a small mouthful. Very demoralising and upsetting. I’m finding it hard to be supportive today, I’ve offered ten or more things and all gone in the bin.

I'm not a medical professional and this is just my observation but I think sometimes it's the actual drugs that makes them grumpy. Dexamethasone in particular had a very definite effect on MrW. Or it's something else.
Anyway I hope you know that it's not you. You just happen to be there, trying to fix it. Can you make a little time for yourself, maybe find somewhere quiet?

He’s agreed to a feeding tube. When I rang after my meal tonight they’d put it in. He wasn’t keen but he recognised that he was not eating too fortunately. He has to eat alongside it so I will be taking tasty Christmas treats with some hope he may be interested.

Im planning on a day off on Saturday if all is well. He’s out of the danger zone apparently, dr was sure he had sepsis, he’s been on a cocktail of iv antibiotics all day. An outing issue was also given the all clear today and lovely dr said he’s heading in the right direction to go home BUT that was before the feeding tube went it. Dietician said really needs to be in a week, but she didn’t tell DH that.

I fell asleep on relatives sofa straight after dinner, borderline embarrassing.

I hope everyone manages to have a happy Christmas even if not quite as would normally be 💐💐💐

Happy Christmas everyone.

DH pulled out feeling tube in his sleep but had actually eaten something this morning which was good. I’m coming back later and he’s asked for a plate of my relatives Christmas dinner.

dr is extremely happy he’s responding to treatment and has said might get home on Sunday which would be good because at least I can snooze on the sofa alongside the hospital bed in the lounge.

the bed at dear relatives is super comfy and I’m being well looked after

@Hisredipad Glad to hear the positive update & that your relative has a comfy sofa. Sending positive wishes today 🎄