obsessed with how long we have left

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 

Thanks so much for sharing this. I am in a similar position, my husband was diagnosed with incurable kidney cancer just over two years ago. Last week, he was bluelighted into hospital, and we both felt the end is coming nearer. This week he is feeling better and so it is back to the rollercoaster and uncertainty. Questions about how long and what then and what until then and how are very much on my mind, too. Before anything else, I wanted to say your post resonated so much with me.

What helped me this week was a visit from the palliative care community team. The nurse answered my question about recognising when someone is dying and described the dying process. Last week I was scared that it would all be very sudden, and she helped me understand things a bit better. I found it really helpful to hear about the nurse's experience with many dying cancer patients. Things felt a tiny bit more normal then. But only a tiny bit.

I hope you're ok and thanks for posting your thoughts!

Dear Hibiskus,

Thank you so much for this reply. It is a rollercoaster indeed, and so hard to negotiate all these ups and downs all the time. I really feel for you and completely relate to that experience of bracing yourselves for the end only to be back in the uncertainty again.

I'm glad if reading my post helped a tiny bit. There is a comfort in knowing one is not alone in going through this stuff.

It was interesting to read about how you felt you had good support and advice from the palliative care nurse. How did this visit come about? Was it via your husband's GP or the hospice? Perhaps this could be helpful for us too... We have contact with a nurse at the hospice but I haven't found her very helpful if I'm honest.. I would like to understand more about what to look for, what to expect, though I know every case is different, I feel there must be some patterns/signs that an experienced person like your nurse would know..

Wishing you and your husband the best that can be in this tough situation.

Thanks so much for replying, Bexx. I'm new here and it was so nice to receive such a kind message back. 

I can imagine so many things that would make sense of what you write about your experience with the nurse. Is it something specific? Are there other ones? Is it the vagueness and the 'no-one can say for sure'? My heart goes out to you, all this uncertainty is so hard to bear and there seems to be no choice, even though no-one would choose this.

We had a home visit from palliative care in Dec 2024 that I found entirely unhelpful. Both visits were arranged by my husband's GP - in 2024 because a neighbour who is also a doctor thought he was nearing the end, which didn't match my sense of things. I found that really upsetting. The visit this week was helpful because the nurse answered my question about signs that someone is 'actively dying' directly. And she told me that it would be a process and not a sudden thing. Somehow that was a relief after my husband had been rushed to hospital the week before and everything seemed to crescendo to something horrific and sudden. So I guess it was the context that made me appreciate what she said and perhaps also the fact that I wanted to know things.

I am so grateful you posted your thoughts and feelings, thank you! Thinking of you and your husband and hope you have a good night!

Hi bexx and Hibiskus

It is all so difficult when you are in this position. My husband, who died in October, was doing well even when all treatment stopped and they said he had a few months. He always believed he would live longer than the estimates. But quite suddenly, he stopped eating, could barely walk and more or less took to his bed. From then, we got 7 weeks. We had many of the stories about peole who defied the odds but the reality is that, whilst some do, many do not. We knew his tumours were growing very quickly, we could see one of them getting bigger almost daily.

In the very end, he did go very suddenly. Even 3 days before, he was sitting up in bed chatting away.

For me, the marker that we was slipping away was the loss of mobility and lack of interest in food. Eating was a struggle and the body can only survive so long without food.

One of the best pieces of information I was given by a hospice nurse turned out to be spot on in my husbands case. I can't say its true for everyone.

If you see changes happening monthly, then you think of months. When changes become weekly, then you have weeks. And if change is happening daily, then you are looking days. Of course its not an exact science but when I look back now, it was what happened.

This journey is so tough, try to find time to be kind to yourselves, be with your partners, talk laugh and cry, do things they enjoy, sleep when you can, take any hospice help offered, and remember how amazing you are. 

Dear Malengwa,

I am so sorry for your loss and hope you are doing ok.

Thanks so much for sharing your experience and the nurse's information. Linking the rate of change to what it might mean makes so much sense. So helpful. I was just thinking that changes can be so sudden...

Many thanks for sharing!

Sending you a big hug.

Very well written I completely agree with your observation about correlating the changes happening to where your loved one is at.

It serves as a useful barometer as to where your partner or a loved one is that in the process. I wish I’d been more aware of this at the time.

Looking back this is exactly what happened to my beautiful wife.

Hello, I'm new to this forum but thank you for posting and I hope I can share something which has helped me today.

I have a friend whose mum passed away last week from the same cancer that my mum has.  She called me today and said "you know your mum's condition day-to-day.  Trust your judgement.  You will see any gradual getting weaker before the professionals will, then act".

I hope that helps a bit, be confident in your judgement and wishing you lots of love and care.

xxx

Dear Malengwa,

I'm so very sorry for your loss. I hope you have loving family and friends around to support and care for you as you go through this.

Thank you so much for your reply to my post, and for being so honest about your husband's experience. This advice about noting the changes over time is really helpful and makes a lot of sense....

People talk so little about the end of life, I am very grateful that you felt able to share these details as it gives me a picture of what this might look like, even though everyone's case is different of course. 

Thank you to everyone who has replied and commented here. The kindness and support of you all is amazing, I realise I've been feeling very alone with this until now. I want to reply to you all individually but I have to go see to my husband now, I hope I'll have time to come back here later.

Sending hugs to you all