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.