I was diagnosed with stage 4 bowel cancer in 2018 after an emergency hospital admission. I have now had three major abdominal surgeries and am about to embark on my fifth season of chemo. I am a public policy professional and I have continued to work throughout my illness. I’ve become interested in how people speak about death as I’ve found myself occupying the space in between living and dying. My retirement project ‘Dying Well’ (in partnership with the What Works Centre for Wellbeing) is exploring how wellbeing evidence can improve the lives of those living with terminal illness. I live in Sussex with my husband and three school age children.
1. No one tells you you’re dying.
I’ve been told I have stage 4 cancer. I’ve ticked the box for ‘palliative care’. I’ve been referred to a hospice. But no one has ever actually told me that I’m dying, or used the words ‘terminal illness’ to me. You might think it’s obvious, but mostly I’ve had to join the dots for myself.
2. You can be well, but still dying
How ‘well’ I seem has more to do with how much chemo or which surgery I’ve had recently than how close I am to actually dying. I’ve tried hard to prioritise my own wellbeing: diet, exercise, green space, prayer, family connection. My body might not be in a great place anymore, but my mind can be.
3. People find it really uncomfortable to talk about dying
Even when I talk about my own death, which I’m reconciled to and comfortable with, I’ve been told to be more positive, to ‘not talk like that’, to have more faith or worse directed to a range of ‘cures’ that apparently my medical team have overlooked. I’ve been amazed how many people seem to think that we are immortal and that everything can be cured if we try hard enough. But talking about dying and making plans really does help.
4. Cancer is a team sport
It matters to me to talk honestly to those close to me about what’s coming and to include them in my plans because they will be the ones left behind. From a medical point of view there is also a large team involved in my treatment. And although it’s necessary and helpful to have all these people involved, sometimes being a patient can feel a bit like being a project manager.
5. Dying is mostly about living
My day-to-day life is very normal. Most days if you met me you wouldn’t know that I was sick. I have a few days where the chemo side effects leave me crying under my duvet, but more often than not you’ll find me drinking tea in the garden, reading, working, doing the school run, washing the car… just living.
@DyingWell_UK
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www.DyingWell.uk
