Long term but incurable

Hi PS67 

I did a living with less stress course that really helped me, that learning to appreciate what we have day to day rather than thinking of what might happen in the future - partially it helped me to realise that we still don't really know who will live the longest anyway - especially with my driving! 

The controlled breathing exercises are good for helping me relax but also when life decides to throw us a curveball.

The trancedental mediation bit just made me laugh though, that was ok of coruse as not all tools work for everybody. 

<<hugs>>

Steve

Thank you Steve.

I did do a few counselling sessions and it was the breathing meditations that helped me most. I have stopped doing them regularly and revisiting that infrequently is harder as the pervasive thoughts get in the way more easily.

Maybe I'll get back to doing that as regularly as possible. 

After getting a 2 year prognosis in January 2025 and having her still here 19 months later is a real blessing. She hopefully has longer than the median given by the oncologist back then - she is stubborn and determined to prove him wrong!

Thanks for responding  - it's been a long 3 years but at least we have had that time. I know others are not as fortunate. 

Hi,

I'm not sure what you mean by moving to a 'maintenance' phase for a while. But, to your general question, I can offer my own experience.

Having - we thought - been completely cured of her primary oesophageal cancer in February  2020, my wife was diagnosed with secondary cancer in September 2022, and we were told that it would be terminal; but, as everyone here knows, the medics can't give a firm timescale. We both agreed that we would take any treatment on offer, in order to try to buy some useful time.

The eventual outcome was that, about six months later, after some gruelling chemotherapy, my wife was fit enough to travel - so we went on a very long holiday. It was the last holiday we took: by the time we got back, my wife was getting ill again - and she died two months later, on the 30th October 2023.

I am still in shock about all of this - and my life feels ruined - but I think we did the right thing to have a trip when my wife was (mostly) symptom-free. Because, what would the alternative have been? There is a risk of being a permanent patient, and receiving permanent treatment - rather than using whatever time you have left to do something which is actually enjoyable.

There are no easy answers to any of this - and I am left with many questions about how it worked out for us. But my wife was a wonderfully stoic person - she never complained about her lot - and we had been told by the oncologist that the entire aim of the treatment for her secondary cancer was to get her symptom-free enough, in order to allow us to do things for a while.

I send both you and your wife my love and best wishes. This is a horrible disease, and it's a horrible position to have arrived at. But there is no rhyme or reason to any of that - it's mostly down to just dumb luck.

Thank you again. I'm not sure you can ever quite fully reconcile something like you've gone through but I hope you find some peace somehow.

I am open to taking a really good holiday. She's more concerned though, as she doesn't want to leave me with any issues if she got seriously ill while away. Her first husband died on holidays with her (a traffic accident) and she was left to deal with things alone. 

Thanks for sharing. Sometimes helps to get some words out.

All the best.

Thanks. It's an utterly shit situation - but it's what we've got.

PS67 said:

am open to taking a really good holiday. She's more concerned though, as she doesn't want to leave me with any issues if she got seriously ill while away.

We considered similar issues. (And, as I suggested, my wife was much more fearless than I am.) But what's the worst that could happen? If your wife got seriously ill while you were away, then whatever travel insurance you'd taken in advance of the trip would kick in.

I am not trying to offer either advice or suggestions here - but that's how we approached the issue. And I am very pleased that we took the opportunity we did: life is very short, and can be cruel.

All the very best to you both.