When I was diagnosed with breast cancer in 2009, I discovered that it’s possible to stay in the same place while simultaneously moving into an entirely new world. I still lived in the same place. I still had the same job and many of the same colleagues. To the unobservant, I even looked the same - once my hair grew back that is. To the outsider, nothing about my life seemed to have changed but in fact everything had changed, everything was different.
My BRCA1 mutation was only discovered because I was lucky enough to take part in a research programme. This, in turn, led to a preventative bilateral mastectomy in 2012 and the early discovery of an occult tumour which did not show up on any scans. If I live, I’ll be the first generation in the history of my family to have survived not just one, but two, cancer diagnoses. Modern medicine has saved my life. I’m a miracle of science.
But modern medicine has also left my body broken. I’d love to say surgery was a success but it was fraught with complications. I’ve had four mastectomies (yep, that’s not a typo) and I also have lymphoedema in both arms, my right hand and, more recently, my upper body. One of my doctors called me “rare and unusual.” I don’t think it was a compliment. My life has been saved but there has been a price to pay - physically and mentally. When I was first diagnosed with breast cancer, I was a - relatively - care-free, young-ish (I’d just turned 40), fit woman, with a toddler, a recent promotion and fizzing with energy. Like many others, I’ve emerged from treatment feeling like an old woman and with a number of medical problems, like lymphoedema, insomnia, menopause, pain and fatigue - all brought on by treatment.
Too scared to even Google ‘triple negative breast cancer’ for over a year, I’ve spent vast reserves of energy running away from my fears. There were, and still are, places in my mind where I dare not go. For me, the threat of recurrence receded somewhat when I reached the five-year milestone last year, but the fear of recurrence for women diagnosed with primary breast cancer and of progression for women with secondary breast cancer is real. Cancer is not something we can put behind us as our survival may depend on our vigilance to symptoms which need reporting to our doctors for further investigation.
I became mute in the face of my experience of cancer. I’ve written before that articulating the feelings associated with breast cancer is like trying to describe music with words (can you find the words to describe, say, Clair du Lune by Debussy?) In his book, “The Body Keeps the Score,” Bessel Van Der Kolk, describes how “trauma drives us to the edge of comprehension, cutting us off from a language based on common experience.” In time, he says we may develop a ‘cover story’ but it rarely captures the truth of our inner world. While we should be careful not to take on labels without having been diagnosed by an appropriate professional, many women diagnosed with breast cancer experience symptoms of post-traumatic stress, such as flashbacks, feeling emotionally numb or becoming irrationally upset by relatively minor occurrences that would be overlooked by most people. There is beginning to be a greater recognition of the impact that any cancer diagnosis has on our mental health, but there is a lack of support in the health and care system and still a long way to go.
Five years have passed since my last diagnosis with breast cancer and it seems I’m only just beginning to move on. “Go – live your life,” said my Oncologist when he deemed I no longer needed to see him again last November. The thing is, I’m not sure I remember how to live my life anymore. Like many others, I’ve presented a positive front - my public face - to family and friends. I wanted to protect them and myself. I don’t complain because, well, “I’m still here” and after all, “I beat cancer”, didn’t I? I’ve learned to hide my true feelings. Worse still, I’ve hidden my true self. I feel lucky and grateful, but - and it’s taken me a long time to admit this - I feel loss. I thought that if I pushed through my feelings I would get to the other side. I thought I’d be able to forget about cancer but it seems that there is no other side, only adjustment and acceptance. The simple truth is that that I can’t be the person I was before I was diagnosed with breast cancer. I must learn to take my experience of cancer forwards with me, into the future, into the unknown.
Finally, I’m ready to start moving on.