‘Recovery is my trajectory for life.’ Charlotte Farhan
Today I read this excellent blog on recovering from trauma and abuse. It’s not about cancer but it rings so many bells it might as well be St Paul’s Cathedral. The one thing I’ve not been able to succinctly put my finger on about life after cancer is exactly this problem with the language used around the disease and its aftermath, and the expectations of other people on how you should be feeling.
Fighter. Winner. Survivor. Battle. Fight. Lost.
These are all terms that correlate with cancer. They are stereotypically found in the newspaper reports of celebrities who have just died from cancer, although they are often also applied to heart wrenching stories of everyday people too. The reason I don’t like them is because they make cancer seem like a valiant war when it’s merely an unfortunate and unpredictable thing that happens to 1 in 2 of us throughout our lifetime (according to Cancer Research UK).
The connotations of these words is tied up in imagary of a violent struggle, and cancer isn’t. It’s the terrifying malfunction of cells in your body, a fault which can happen again – or carry on happening even when your doctors and you attempt to kill the errant cells with surgery, cytotoxic medication and radiation. It’s facing your own mortality and trying to find peace with that. It’s changes to your body and mind that you often can’t reverse. It’s the secret prayer that your body will overcome the failure of that one cell to reproduce properly even if your mind can’t tame the fear that it won’t.
The one I’d like to sanction the most is ‘survivor’. You don’t survive cancer, you get better and hope that you stay better. Survivor, in its literal definition according the Oxford English dictionary is ‘A person who survives, especially a person remaining alive after an event in which others have died’ and in that sense someone who’s had cancer is a survivor. But the connotations of the word imply an epic struggle to overcome adversity, and cancer isn’t. It’s a slow and lonely illness, the complications of which last many years. The connotations suggest that the survivor is healed or cured – a warrior of modern medicine – and in fact you’re only ever in remission, or my favoured term, you have No Evidence of Disease (NED). It can and often does come back. Imagine how the term survivor must feel to someone with stage 4 cancer, who knows their metastasis will eventually kill them?
Once you’re declared NED you’re expected to get on with life, a warrior who has shown cancer who’s boss and won. People expect you to be positive. People often don’t want to hear that you’re convinced you’ll die one day anyway. They expect you to get over it, but you don’t. Some patients manage to come to terms with it, others never do, but ultimately it’s a traumatic experience to face your own mortality, and that damage often lingers for a long time after your oncologist discharges you. You know that if you make it to 10 years you stand a pretty good chance of seeing another few, but with 10 year survival rates at 50%, you live with the fear that the odds could be better. Different cancers have different survival rates, depending on how easy they are to detect and treat, but the average is 50%. Half of all people diagnosed with cancer will be dead within 10 years. That’s pretty scary. Some days are better than others and you can convince yourself you’ll be in the 50% who live. But some days are a furore of fear and isolation that only other cancer patients can fully understand.
So, like Charlotte said, recovery is my trajectory for life. Staying healthy and NED is the path I follow, but if the cancer comes back and I die, I won’t have lost a battle or a war. I will have lived and died like every other single living organism on this planet.