I’ve lived with the spectre of cancer, its insidious cool breath whispering damaging statements into my psyche, for 19 out of my 46 years. It’s amazing to think that one day soon I’ll have had the monkey of cancer on my back (which is missing a lat dorsi muscle on my right hand side, I remind myself as I type this to manually lower my right shoulder) for longer than I didn’t.

I’m ‘lucky’. Diagnosed at 26, apart from two mentally damaging false alarms I, to the best of my knowledge, remain cancer free. It’s not something I take for granted. I was 26 when my cavalier approach to life departed my body. In an eight hour, $60k operation I had the breast tissue, the nipple and 23 lymph nodes removed from my right hand side, and the lat dorsi muscle from my back pulled through to pad out my new boob. 

This type of reconstruction for a mastectomy has fallen out of favour as advances in science provide better options. And muscle memory is such a strange thing that to this day when I try and yank something with my right arm the muscle in my breast involuntarily spasms.

I’ve been held up as a paradigm of what a ‘good’ ‘survivor’ looks like. Long thick hair, two healthy children, a sunny disposition and positive attitude. And for the most part those things are all true. But what they belie is the torture I have lived. 

The hours of therapy to work through my anger over the loss of my innocence, the irrational fears and superstitions that flooded my thoughts (‘if a black car drives past next that means I am going to die’), the ongoing conversations in my head, that cool whispering breath refusing to leave me alone at night while the rest of the world rests. 

In my first few years of remission I was resolutely – if not morbidly – positive, lest a rogue negative thought popped into my brain and killed me. But it wasn’t just life coach-esque toxic positivity that drove this. The cliche ‘fight’ against cancer is never more real than while you’re undergoing treatment. It would be unbearable to spend too much time dwelling on your mortality while recovering from having your breast lopped off and being poisoned every other week. Still, the Pollyanna approach left me woefully unprepared for when I lost first one dear friend to the disease, then another. 

Alienated from my peers while undergoing treatment (understandably so, we were little more than teens after all), I cocooned myself in the warmth of an amazing group of women who were all having treatment at the same time. We became fast friends with what I’d believed to be an unbreakable bond. Until Fleur and Helen died, leaving five children between them. Motherhood, and a certain amount of survivor's guilt, followed soon after for me, and with them a refusal to believe it could ever happen to me.

But the more I sit with my feelings, and that cool breath that won’t quit whispering, the more I understand that refusing to accept it could happen to me is not an exercise in self-love, it’s blindsided ignorance. 

I’m not cleverer than anyone who has died before me, and I certainly haven’t cracked the code. Nor am I able to live in a world where breast cancer and those who survive it, along with those who don’t, aren’t visible. A world where Olivia Newton John can live in remission for 20 years before eventually dying of the disease. Hopefully this is something that never happens to me. But if it does I have to know it’s not my fault, and treat myself with compassion and kindness. 

Shortly after I was diagnosed in 2003 I was introduced to Claire McLintock (soon to be in my aforementioned amazing group of women) via several mutual friends. She’d been diagnosed a couple of months earlier and, everyone assured me, was doing amazingly well. I couldn’t wait to meet her and find out what the secret was for doing amazingly well with a cancer diagnosis. “I’m totally shit” was her cheery response. 

It was then I realised that people only hear what they want to. Nineteen years later and frequently asked to meet with people recently diagnosed, I consider this often. What is the appropriate amount of hope to give people? If they know how unfathomably difficult the rest of their life will be, even if the cancer never recurs, how will they be able to put one foot in front of the other? 

Last week I decided that I’d get dressed in the changing rooms after pilates, like most people do, rather than hiding my body away in a cubicle. After all, I consider it important to normalise my mismatched breasts to my two sons, I should normalise them in public as well. 

I changed my mind at the last minute. Nineteen years later and still not as in control of this thing as I’d have hoped.