What the living with and beyond cancer research priorities mean to me – Richard Stephen’s story
“Vaseline, ginger beer, soft-bristled toothbrush, ginger biscuits, baby shampoo, and put ginger in your food. ”
That was the shopping list I was given when starting off on my chemotherapy. The list was made up of the most common suggestions made by other cancer patients to their nurses, and now many years later, I am happy to confirm that they all helped me – except for the several weeks when all biscuits tasted of wood, and when my gums and fingers and toes all bled through the Vaseline anyway, and when… well, anyway, if you’ve been through it, you’ll know.
That was then. Now I am interested in things like “late effects” (my drugs damaged my heart and arteries, I now have a stent and constant breathlessness), and fatigue. I was a 38-year old rugby player when first diagnosed with Hodgkin’s Lymphoma and I thought fatigue was a myth. Now I know it isn’t, and all the descriptions people give about “hitting a wall” and “you just want to drop” are absolutely right. It is certainly far worse than coming off the pitch after a hard game. At least then I could still manage to walk to the changing rooms.
And there’s the 4am wake-up long after they tell you that the cancer has gone. You wake up at 4am, and the first thought is “Has it just come back?” rapidly followed by “What do I do if it has?” I remember one night it happened to me, and one of my symptoms had returned too – I was pouring with sweat. Then I realised I’d left the heating on. It didn’t stop the thought though; “But has it just come back anyway?”
The important thing about the research priorities in the Living With and Beyond Cancer Priority Setting Partnership project is that they come from people like me; from fellow patients, from our carers and from the doctors and nurses in our clinics. The priority questions address what we go through as people with the disease and its treatments, and what happens afterwards too. There is a lot of research on curing; these questions are about coping. They are questions where we need to know and understand the answers so that we can act on them ourselves.
The other thing that strikes me about these questions is to how easily they can be applied to specific groups of people affected by cancer. For example, how best to care for people who have complex needs and living alone, or from particular ethnic communities, or with learning difficulties, plus of course, tailor the research questions to the different cancers and treatments too.
I am really looking forward to seeing some of the answers come out of the research that this project will generate, especially as so many of the issues still affect me. One unexpected one too; these days I can’t stand the taste of ginger.