It's two years and 18 months since my beloved husband's terminal diagnosis. At the time, the consultant told us that with treatment he could probably expect to live 18 months. When the last chemo stopped working in the summer, we were told maybe 6 more months. We both thought he wouldn't see 2026, but here we are.
We have been incredibly fortunate to have this time together and have managed to achieve and enjoy many things in this time, in spite of the chemo and the increasing effects of the cancer as it spreads and makes itself more and more felt. We've also been through hell at times. Anyone and everyone else here knows what I'm talking about..
So the thing is: I have become obsessed with trying to second guess how things will play out, how much longer he has left, what the last weeks and months will be like. Whilst there's no doubt that things have changed a great deal in the last few months, the changes are slow, he is still well enough to go out for a short walk most days though his energy levels have dropped as he is taking more morphine to cope with the pain.
I've spent so long living with the anticipatory grief, so long trying to comprehend what my life will be like without him or how I will cope. I'm so sad seeing him gradually disappearing from me, noticing one by one the things that we no longer do together, the changes in him physically and his personality. I'm continually bracing myself for this loss that I know is coming yet it doesn't come. I don't want him to die, yet part of me wants just for all this to be over, for me to have a chance to rebuild my life while I still have time.
Another part of me still doesn't believe he is dying. Amongst my friends, there are always some who want to tell me miracle stories, the person they know who keeps on living in spite of having been told years ago they had only months to live, etc. I don't find these stories very helpful as a rule, but sometimes I get seduced. Yesterday a friend told my husband about a book called 'Radical Remission'. I just googled it and was immediately convinced that this must be what will happen in my husband's case, it must be, otherwise surely he would've died before now? (Has anyone heard of or read this book I wonder? Is this kind of hoping useful or just a form of denial?)
Apologies for this long post. I know all this sounds incredibly self-centred. I feel selfish a lot of the time for thinking about how I will cope and what my life will be like when really now I should be focussed on him. I don't know if others have these feelings. Does anyone have any advice on how to cope with this ongoing uncertainty? Is there a way to tell how close someone is to dying?
This is an incredibly brave post. I can only imagine how hard it must have been to find the words, and even harder to press the “post” button. What you’re going through is extraordinarily difficult, and it’s completely natural to feel pulled in different directions by hope, fear, opinions, and uncertainty. It can feel like a minefield just trying to work out how to put one foot in front of the other. Still, hope — however fragile or changeable — is a powerful thing to hold on to.
I recognise so much of what you describe. I was in a very similar position with my wife, and we lived through many of the same emotions and dilemmas you’ve outlined. One of the hardest things to come to terms with is that none of it is linear. There are days that feel unbearable even when things appear to be improving, and others where things seem calmer when, underneath, they’re not. That emotional rollercoaster is exhausting — and entirely normal.
Please be kind to yourself as you navigate this. You’re doing the best you can in an impossibly hard situation.
Thank you so much Greatblackhawk for your kind reply. It really means a lot to read this, though I am sad to hear of anyone else who has had to go through it. It's something I don't think anyone can really understand unless they have been there.
I guess it's easy to underestimate how exhausting living with this situation can be, especially when it's been going on for so long that it's become kind of normal..
What you say about the difficulty of cancer not being linear really rings true. Often people are asking me how my husband is and I just don't know how to answer, some days things do feel easier, others are just grim.
Actually I was just going to delete my post, thinking I shouldn't have shared it - but now I have read this I'll leave it up for now!
Thank you, wishing you well
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