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 recent tweet from @earthwindkernow got me thinking about the numbers in my cancer journey. I know many cancer patients really keep track of all this stuff, but honestly I don’t. I tend to take each day as it comes and deal with what’s before me. I’m not even really sure about how to ‘count’ chemo sessions. (I get confused about the difference between rounds / cycles so we use the American TV system of Seasons and Episodes to keep track.)
Seeing Emma’s numbers laid out, and having been so carefully kept track of, made me wonder about my approach. Maybe things are different when you have a terminal diagnosis because we don’t really expect our treatment to ‘end’. I won’t get to ring that controversial bell or ever walk away in triumph from a fight that has been finished or won.
There’s seems little point counting how many chemo episodes I’ve had, because I don’t know how many more are to come. But I did try to put a list together, it was late a night and on my phone. It’s probably not 100% accurate, but it’s near enough. Quite a lot of stuff to fit into 30 months when I see it all laid out like this!
A bigger question that I’ve been pondering this week is what do these numbers tell me, and how do we measure success for those people living with terminal illness? The fact that we don’t even really have numbers on how many people of working age are living with terminal illness demonstrates the scale of the evidence gap. I’ve been arguing that we need to look beyond pure survival rates to think more about patient wellbeing, so I was delighted to meet some palliative care professionals who are keen to do more on patient centered outcomes and get the conversation going about how wellbeing evidence can improve the lives of those living with terminal illness. I’m so pleased that my personal story is working as a catalyst to bring people together to have these kind of conversations.