Storm Part 4 (for partners of people with cancer)

[Willowkins]

New thread as the old one filled up. Part 3 can be found at https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3?page=1

Thinking of you today @Evenstar xx

Hello, I have been following this thread for a while but have been scared to post, mostly because although my husband has stage 4 bowel cancer spread to liver for the last 6 years, up until this year he has been coping with the treatment really well and most of the time you wouldn’t really know - so in a very different place to the discussions normally happening here that I didn’t want to face.
Unfortunately this year has blown everything apart! so far he has spent about 4 months of the year in hospital due to blocked biliary stents and despite multiple procedures they can’t unblock it. Last week we were told for the 4th time that there is nothing more they can do and this time they finally mean it. They discharged him after the infection and sepsis was brought under control and after a call with oncology, who confirmed that treatment was now stopping as there was nothing more they can do, they also advised they couldn’t talk about anything in detail over the phone, we now have a meeting next week to discuss (lack of) next steps.
It’s not the cancer that is going to kill him, it’s his liver and bilirubin levels and we are having to wait 2 weeks to get a decent and realistic conversation.
They have been very clear that there is nothing more they can do but I am a person of detail and planning and trying to prepare myself as that will be the o my slightest thing that will keep me sane and give me a purpose and waiting 2 weeks with everything outside of my control is excruciating!
The mood swings of my husband is also not helping, he’s switching between being very emotional - which is unlike him - and being in complete denial - talking about when he could be cancer free and able to get rid of his stoma. It’s giving me whiplash and I am trying very hard to keep a lid on my own emotions and thoughts because he doesn’t want to hear it.
I’m not really posting for anything specific but it’s now time to acknowledge that things are deteriorating and fast, I just don’t know how fast as I have to wait 2 weeks to find out and I am finding it incredibly hard to just carry on like normal which is what DH wants even though he is really ill. I feel like I am in a constant buffering zone.

Hope everything went as well as it could.

welcome @bookwormcrazy- my DH was permanently in denial and would not face anything - I’m the opposite and was researching everything and asking all the questions. And these two weeks will be torture ((hugs)) x

This is me and my husband, complete opposites. I don’t think he could be any more in denial which means anything I say or do that questions or does not support the narrative in his head means I have written him off - even though there are no options left now apart from a complete miracle.

My DH and I were the opposite - I was still praying and hoping for a miracle and he was giving his clothes to charity and telling me what music he wanted at his funeral. Looking back, he was trying to make it easier for me but what I've learnt is there is no easy way and we all do the best we can.

Welcome @bookwormcrazy My DH lives on CoPilot, which has told him more than the oncologist has. I think she's not about to give us a timeframe but we know the chances of a response to the chemotherapy are poor and that most people with this type of cancer die within a year. So, we keep that in mind, which is hard when he's so well in many ways. Hasn't had a day off sick yet!

Thanks everyone.
@thornbury I have been using chatGPT to help analyse his blood test results all the time he’s been in hospital and that was giving us more information than the doctors actually did. However it’s not helping my with potential timeframes and keeps suggesting questions to ask the oncologist.

it’s hard taking each day as it comes. The biggest risk at the minute is that his liver levels are so high he could end up back in hospital at any point from an infection. I am on constant alert and haven’t really had a decent nights sleep since Feb when he first went into hospital.

Hi all, little update here. DH had another PET scan after three cycles of chemo, and we were relieved to hear that there is a 'partial metabolic response'. This wasn't guaranteed since Cancer of Unknown Primary means everything they do is a bit of a stab in the dark. There weren't any new tumours and those that already existed (multiple places in pelvis, several vertebrae, ribs, both shoulder blades, two lymph nodes in groin) had mostly reduced in activity apart from one in the spine that had gone up, and another where the tumour was larger but less active.

So, this is promising, and hopefully means it buys him some extra time. We'll see the oncologist on Tuesday. He thinks he could tolerate three more cycles but that's possibly his limit, even if stopping really means waiting for it to recover its strength and start to grow and spread even further.

That's good news @thornbury and let's hope there's more good news on Tuesday

That’s good news, fingers crossed x

Hi everyone, I just thought I would give an update and hopefully get some advice.
DH has managed to stay out of hospital for the last month which is good, although he is starting to deteriorate in the last week. We have now got him a wheelchair as he can’t walk very far when leaving the house, that’s progressed in the last week or so. The hospice team have agreed for us to up his morphine a bit as he’s in a lot of pain with his back and shoulders, but they don’t think upping his steroids is a good idea. After they visited today, they confirmed that there is a significant difference from the last few times they have seen him so going to organise a blood test to look at his liver levels and how well it’s coping to give an idea of where he is at.

He is mostly sleeping on the sofa downstairs and struggles to build up the “energy” to get upstairs, I do think we are on definitely heading in a downhill direction now.

I think what I am struggling the most with though is his anger and moods. I know he is incredibly scared but he is taking all his frustrations out on me and the dogs and everyone else gets the best, most positive version of him. I am trying so hard not to take things personally but I also know it’s only going to get worse the more down hill he goes. Has anyone else experienced this and how did you navigate it?

I’m so glad you posted @bookwormcrazy. Everything’s gone crazy in the last week, I wanted to update and couldn’t find the thread. I’m so sorry it’s so difficult for you. I think showing the worst of yourself to the person you love most is quite common. He must be terrified.

We had a phone call last Wednesday telling us to go to the hospital immediately as a liver was available. We shot in, arriving at about noon only to sit around all day. It wasn’t until 6 on Thursday morning that we knew the procedure was definitely going ahead, Mr B went to theatre at 8am. I eventually got a call at 6.30 that evening to say he was in ICU.

To my astonishment he was awake and coherent - we’d been told he’d be put in an induced coma - and I had a brief visit. I saw him again on Friday and they got him out of bed and into a chair. He went to high dependency the next day whereupon he had a really bad dip but he’s been on the up ever since. He’s now on the general transplant ward and doing miraculously well. I know we have a long road ahead but the first steps are positive.

Thursday was one of the longest and worst days of my life.

@bookwormcrazy it would probably be worth getting a bed downstairs so he can be more comfortable. We had a hospital bed in place before we needed it, but DH did find it good to lie down and rest rather than having to get upstairs. The district nurses were able to sort that out very quickly.

He absolutely refuses that at the minute. He has been adamant all along that getting a bed is not happening but I think that’s going to have to change at some point.

I am so pleased that things are moving in a positive direction for you. That is good news.

@bookwormcrazy i second the bed. Transformed my ability to look after DH but he was on the last weeks.

I recently bought a fabulous built in pump blow up single bed on amazon for my niece visiting. It cost about £80. Might be a useful alternative idea 💐💐💐

That’s so kind and generous of you when things are so difficult for you.

I think there are times when you have to be the responsible adult and just make the decision. Maybe the bed issue is one of those times. Would it help if the suggestion was made by a health professional?

When it comes to the crunch I will absolutely make the decision. At the moment the hospice team are trying to keep as much in his control as possible and not take the decisions from him which I completely understand.

unfortunately he has spent most of this year in a hospital bed so I think when he starts getting really bad, he will concede or we will find an alternative. He is very much a “facts and figures” person and VERY stubborn. When we manage to get a blood test and he sees it written down on paper how bad things are then he will slowly relent, it’s just a process with DH which the hospice team are working through with him. If it was my decision, I would have had a bed sorted weeks ago, but if it comes to it - I will just get it done.

He has conceded a small amount and we are having a sofa bed delivered next week for downstairs. Any talk of a hospital bed is still an absolute no so I am taking the fact that he’s agreed to a sofa bed as a win.

That will hopefully mean he is a bit more comfortable, if the hospital bed becomes necessary they can even organise same day delivery if needed so don’t worry about that 💐

I do think he will eventually need a hospital bed but he will need to be near the end before he finally admits it. He is so stubborn.

@bookwormcrazy
This happened to MrW - not mean as such but it was like he was saying the quiet bit out loud. I think it was down to the steroids (Dexamethasone) he was on - it's a well documented side effect apparently.
@BIossomtoes that's wonderful news.

Thank you @Willowkins. Unfortunately, he’s unwell today. They’re not sure if he’s got a bug or if there’s something else going on. I’ve been advised not to visit and am waiting to hear the result of a CT scan. I’m trying to convince myself that we expected bumps in the road and this is the first.

Putting a toehold into this thread. DH has stage 4 prostate cancer, diagnosed Sep 2024. Through 2025 and early 2026 it was controlled with chemo and hormone therapy. He had one castration resistant tumour appear earlier this year which was treated with SABR. Last month we found it had come back. So we don't yet know if this will be another treatment and it goes away for a while, or the start of the final lap.

You're welcome @Tinyhands although I'm sure you'd rather not be here. This is a safe place to share and get support.