Concerns about my parents being broken by my cancer

RHello Sammy, I’m sorry to hear what a tough day you and your family are facing tomorrow. When I had my cancer diagnosis nearly 6 years ago I was told it was incurable, my only experience of someone with cancer was my brother in law who passed away within 2 weeks of his diagnosis so it was a big shock hearing those words. I immediately replaced the words incurable with terminal especially as for the first few weeks I was feeling very ill, and was told I was too ill to start treatment but was put on steroids to build up my strength. A few weeks later I was able to start treatment and make the most of the time I thought I had left, at that time it was estimated to be less than 12months. For me a new treatment became available on the NHS 7 months later and I was able to change to that when my first line of treatment stopped working. A few years later my cousin was diagnosed with a different cancer and was gone within 3 months, a very brave and lovely lady who found peace with what was to follow and talked very openly with her family. 

My cancer is still incurable, I’m still receiving treatment when all options treatment options are exhausted and I’m declining then I will consider myself terminal when I have only a few weeks left. At the moment for me there are times when I don’t feel incurable as my treatment has at one time worked so well I was free of cancer. I can not unlearn the experience of that original time though and keep some hope for the future. I think I understand the hope your parents will still have and the need that you will have to embrace the finality of things and not want to contemplate any false hope. I was diagnosed in my 50s and my thoughts were with my husband and 2 daughters, hoping that my death would not effect them too much, I wrote down a list of all my worries and concerns I still have that list they were mainly all about them and not about me, except that my husband tried to have a brave face so much so that it was bordering on no emotion, and I couldn’t take that. I read the sections on here about talking about cancer https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/talking-about-cancer

and we sat and had a very long and open conversation and that was a turning point of us both hugging each other and crying but wanting to face together the time ahead. 

I’d encourage you and your family to talk together, and perhaps to feel that you can separately use the Macmillan support line to ask as many questions as you need. There’s also an organisation called CLICsargent 

https://www.clicsargent.org.uk/ I’ve put the link in as they help with people under 24 I believe that have cancer, and that might be a useful resource for you. I have no experience with them. I did have counselling arranged through my GP, and I attended a local cancer group, but I actually found the cancer groups on here more useful. 

Theres a living with incurable cancer group https://community.macmillan.org.uk/cancer_experiences/living-with-incurable-cancer-forum

and also https://community.macmillan.org.uk/cancer_experiences/diagnosed-at-a-young-age you might want to browse through and start a discussion.

I am wishing you lots of strength for tomorrow, and hope that you have time to jot down some questions. One very useful question is “If I think of something  I want to ask later, who do I contact” for me that was a very helpful Macmillan nurse who would answer what she could and liaise with the consultants for me to get any further info. She got hold of booklets for me and was a listening ear.

If you have any questions please ask and I hope you get a response from other people including those in the age group that might be most helpful for you.