For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
I was active in the bowel cancer group last year but stopped talking in the group when cancer spread to my lungs. I have been dealing with it by great support from my family and amazing friends. However I am a lot further down the line now with the illness and getting a little scared and feel the need to start talking again to fellow sufferers who know what it’s like to be in this situation.
I still have the original tumour in my rectum and lymph nodes but following chemoradiation they have remained the same. Surgery wasn’t performed as by the time the results of treatment were checked it had already speckled both lungs. I am told there are approx 10 lesions, 2 or 3 of which are larger. I also have a mutation so targeted therapy won’t work. I am starting oxaliplatin and capaciteabine next week, hoping to bring things back to a level where I can go a live my life for a while.
Even although it’s almost a year since my first diagnosis it still feels very unreal. I still feel fairly well but now the reality of it all keeps coming to the fore.
Thanks for listening and nice to speak to you all.
Welcome back! Sorry to hear things have spread. Hoping the next round of drugs work well to keep you stable. Good to hear that you feel fairly well - a few treats are in order perhaps!
I understand scared. Last year I was told I only had about 3months to live - miraculously though I started a different treatment and it's all calmed down a bit. Trying to take one day at a time now.
Good to hear from you - keep us updated.
Hi sheensb and very nice to meet you.
It is indeed a surreal landscape we find ourselves inhabiting. I think everyone knows they are going to die one day and the notional bus that could mow down any one of us is somewhere over there, trundling across the horizon. When I was told the cancer was back and was incurable, it felt like the bus was suddenly right in front of me. I couldn’t see round it, past it or under it.
In fact it’s still a notional bus and if I’m able to turn my head and look in another direction, there is still life, love, joy, laughter. There are still annoying teenagers leaving their pants on the floor and jobsworths being a pain in the neck.
Here are some things that help me to live with incurable cancer. Let’s take meditation, counselling, family and friends and staying in the day as a given. Beyond those my favourite things are:
1. Swearing. I do swear more than I used to. Although more recently less than I have at some stages. My desire to swear is a good indicator of my state of mind.
2. Planning things to do. I might not be well enough when the day comes but I might make it. If I don’t plan things to do then I know for sure I won’t go.
3. If I find myself drifting off into sad places, telling myself repeatedly “I do not wish to think about this”. It takes a few days but it works for me.
I hope the chemo delivers lots more good days when you can enjoy life to the full. I recently finished my third six-month chemo marathon, quickly followed by a lingering kidney infection and for the first time in a long time I’m feeling well. It’s brilliant.
What is a community champ?
Hi Sheena so sorry that you find yourself here in the incurable group even though it is a lovely bunch of people.
Just wanted to let you know that I got a brilliant 20 months out of capecitabine before I had any progression.
Brilliant words from the others as usual which I hope give you some comfort.
Hugs P xx
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