This blog was originally published on Dyingwell.uk, a website owned by Clair Fisher.
In Clair’s words: “Dying Well was my retirement project. A space for me to document my personal journey, to explore the evidence around wellbeing in terminal illness and test out some of the theories.”
A twitter thread I wrote about my recent scan results has got so much interest that I thought I would capture and expand the thoughts I pushed out in haste after a phone call with the oncologist into something more coherent here:
30 months ago I was give a 50/50 change of surviving a year. 5 months ago I got the official 6 months or less notice. Today I’ve been told scans show the cancer is back to where it was in September. This is the reality of terminal illness; occupying the space between living and dying. Some people are surprised how open I am about the reality of death and dying, but this reality has become the new normal in our family.
We talk about what to wear to my funeral as we tidy our wardrobes. As we walk home from school we speculate about whether I will be on a chemo break for the holidays. As we plant flowers we wonder what will be in season to decorate the church with when I die. But these are in between conversations too. They sit in between all the other normal day-to-day chat of a family. We don’t have a separate ‘death drama’ section for these exchanges. We never sit down for ‘BIG’ discussions. Instead these fragments occur around the edges of the every day. We are sometimes sad, but more often hopeful and happy. And bit by bit we build a shared understanding of what will be and how we want things to be.
I find quiet acceptance, just enjoying every extra sunny day, for less stressful than the constant ‘fight’ that seems to be expected of cancer patients. I don’t feel like I’ve ever ‘fought’ cancer, and I don’t want to remembered that way. My death, when it comes won’t be because I haven’t fought hard enough. As my son said, you would never say someone lost a fight with a bus if one ran them over!
It’s simply not realistic to expect there to be a cure for everything – we are not immortal! The real problem is that our society just isn’t good enough at talking about death and dying, or supporting the wellbeing of those living with terminal illness.
In admitting that I have a terminal illness, and in finding that the cancer is still present in my body after 30 months of treatment, I don’t feel that medicine has failed me. I’m amazed that I’m still here and feeling so well.
But this living in the in between space is pretty exhausting.
I don’t mean to seem ungrateful, but having come to terms with my the possibility of my imminent death it’s kinda hard to know how to fill the unknown amount of days ahead. We plan on a rolling month / 3 month basis, but I don’t want to hold my kids and family back from making firmer long term plans that may or may not include me.
I’m grateful for the amazing family, church and hospice support. But I’m more convinced than ever that Dying Well is something that our society needs to be better at. I’m so excited at the baby steps of progress that we seem to be making and for the momentum that is building around considering a wellbeing approach as we design and deliver services for people living with terminal illness.
Thank you to the so many followers on twitter who have got in touch to offer encouragement for this little project, to share your own stories, and to tell me how reading mine has offered reassurance and inspiration.