Today I am 5. It is 5 years today since I had an eight-hour surgery to remove the cancer in my right breast. (And then another eight awful, scary hours in recovery, that’s another story to maybe write one day.) Over the following 18 months I had several further surgeries as part of the whole mastectomy/reconstruction/dealing with problems brought on by first breast cancer treatments/surgery.
This month I am also 19. It is 19 years since I had the surgery (and then chemo and radiotherapy) to remove the first cancer in my right breast.
I don’t have a right breast any more. I don’t have children (chemo-induced infertility). I don’t have many days that are pain-free (surgeries and chemo in my 30s contributing to arthritis and pain).
I don’t have my mortality virginity any more. I know I am going to die – not because I have dear friends and closest of family (both parents, a sister, a nephew) who are dead, not because I have experienced the deaths of others, of course I have at this stage, but because on two occasions in my life I have seriously and for some time looked at my own possible death.
The cons are big. They affect me every day, especially the ongoing pain. And there have also been gains.
nb – I am NOT saying people should find gains/gifts/magic etc from bad stuff. No-one has to do this. Entire bloody industries have built themselves on this premise and it is hugely dangerous to suggest people should look for good in bad stuff. Let each of us do what is right for us. Sometimes it is useful for me to look at the gains – sometimes it is impossible.
Among the gains are that I know myself better from both cancers, from both of those life-shocks, from both times (and ongoing) worry about leaving my wife alone. I know myself better enough to know there is still so much I don’t know.
I know and welcome the support of family and friends who have wanted me to stay alive – actively wanted, acted on their wanting. Deeds not words. (Deeds like bringing food and not stopping because sick people can’t always chat. Deeds like just being near, physically or virtually. Kindest of deeds.)
I know that life is finite. Very finite. Yet I still waste time trying to please people I could probably ignore. I still waste energy because of my (absurd but real) deep-rooted desire to be liked, approved of. I still do too much in the hope that my too much might be enough. But I am also doing these things a little less than before. They might have come with age anyway, they have certainly come with cancers and recovery – physical, emotional, psychological.
I know my body’s ability to recover, to re-grow, to return to me is phenomenal. Truly astonishing. It is also not infinite and needs time, rest, yoga, feeding and watering, and care. And still, I will never be as ‘whole’ as I was before my first big surgery. Not just the chunks of flesh and bone and muscles and sinew and blood vessels that are gone along with the cancers, not just the scars, but the idea that I am unbroken. I am broken. And that is becoming ok.
I know that the NHS is so important and I mourn how unloved it has been by successive governments, ignoring the will of the people.
I know I have connections with other cancer people, other illness people, that I do not have with someone who has not faced their own potentially life-threatening disease. These connections are gold. And where they are not is also fine. We all have stuff.
I know that, in me, cancer precipitated or uncovered or reminded me of a lot of mental health issues and unhappiness. I’m not sure I could have avoided it, I think perhaps it’s good that physical health shows up in mental health, they are linked. I know that I am getting better at joining my body and mind. I know I have a long way to go.
Our culture talks about cancer in five-year terms, ten-year terms. I thought that maybe I was ‘safe’ once I got to ten years after my first cancer. I wasn’t. There is no safe.
I thought perhaps I traded my fertility, my chance to be a mother, with the chemo that would stop the cancer from coming back. There was no trade, it came back.
In the five years that have passed, Fun Palaces was born and has grown beyond anything we ever expected, my father-in-law died, I’ve written a couple of novels, a few stories and a play, done 100s of gigs and speeches and shows and panels and talks, taken myself to classes and yoga and pilates and running and swimming and therapy and dancing and singing and laughing and stuff. All along, underneath, there continues to be a thread of fear. Sometimes screaming in my face, other times quiet and almost gentle. Fear of dying in pain, fear of having cancer again, fear of the pain of surgeries again, fear of other treatments again, perfectly rational, grounded-in-fact-and-experience fear. Maybe I will never get to the stage where fear does not sometimes overwhelm me. And maybe I will.
Being alive is a good thing. Being alive to what being alive means – the tough stuff as well as the good – is also a good thing. Yes, I thought I understood this before my first cancer. I think I understand it more now.
When I got to 5 the first time round, back in 2005, I asked my consultant what he thought it meant. He said that the numbers – 5 years, 10 years – are more for statisticians than for the rest of us, they don’t mean much to an individual and how we live, or not, with cancer. He said it makes more sense to look at it as one day and then another.
One day and then another.