Ask yourself this. Do you feel lucky? The question is on my mind quite frequently; I’ve got a picture of Clint Eastwood pointing a gun at me on my computer desktop. I was diagnosed with a form of early breast cancer, DCIS (Ductal Carcinoma in Situ), in December 2009 at the Mermaid Centre in Truro, Cornwall, and have had Dirty Harry on my desktop ever since. I am apparently one of a growing number of ‘previvors’, people who are advised to have surgery to escape invasive breast cancer, in my case by having a mastectomy. I don’t call myself a survivor because my life was not yet under threat; we found my disease just in time. My surgeon reckons it would certainly have been a different story within a couple of years; I would have had invasive breast cancer just in time for my 40th birthday.
From very early on I was driven to try and understand what the hell was happening to my body. Just the word carcinoma, the reference to cancer in DCIS, evokes powerful fear and conjecture. Cancer is one of the oldest illnesses there is; while written evidence of it goes back to ancient Egypt, biological clues have even been found in dinosaur bones. Siddhartha Mukherjee writes in his 2011 biography of cancer that it’s an “ancient disease - once a clandestine, ‘whispered about’ illness - that has metamorphosed into a lethal shape-shifting entity imbued with such penetrating metaphorical, medical, scientific and political potency that cancer is often described as the defining plague of our generation.” Susan Sontag identified in Illness as Metapor the punitive, lurid metaphors for cancer that make the illness even harder to deal with: “as long as a particular disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have.” The disease has been destructive for thousands of years; no wonder it retains a powerful hold on the imagination.
Asking questions, trying to get my head around this terrifying monster and forge it somehow into a more palatable shape, was the only way I could keep my fear at bay – and my family’s. I found a passion for blogging about my surgery and its aftermath that metamorphosed into a no-holds-barred learning journey that I’m sure drove my surgeon nuts as I asked him question after question after question; I bought sushi in the hospital shop one evening after clinic so he would be able to sit and explain every detail about my treatment without leaving for dinner. Understanding different types of cancer and its treatment, talking about it in a way that didn’t involve wars and battles and victims and survivors, using references like Dirty Harry that were mine alone (and sometimes made me laugh) put my experience into a new perspective, a different framework, that helped me cope.
When I realised how important it was for me to understand – in detail - how my surgery had been done, my surgeon and I talked about it using an orange as a stand-in for the breast, because the literature about it went right over my head. He even sent me a text with a picture of an orange he had sculpted to demonstrate how he’d created a new areola complex out of skin from my back. This led to us doing workshops together about how surgery and reconstruction works. We called the workshops ‘Operation Orange’. Sharing this newfound knowledge with other people was scary but satisfying, enjoyable and comforting in the context of craft, and allowed everyone, including me, to talk about the disease and surgery, and individual experiences, in an open and honest manner. (It helped that we washed down our conversation with orange remnants in jugs of Pimms.) I found I was able to explain my surgery to my children in an unthreatening way, and it helped non-patients understand what their friends and relatives had been through. I even ended up doing the workshops on my own with breast screening professionals at an NHS education day.
An appreciation of the surgeon’s craft awakened my interest in the history of surgery. I learned about a letter by Fanny Burney, a novelist around the time of Jane Austen, describing her own mastectomy on 30 September, 1811 and it blew me away. It was written several months after the event, but the memory of that day, the preparation at home, and the description of the surgery itself leaps from the page: “When the dreadful steel was plunged into the breast,” she wrote, “cutting through veins - arteries - flesh - nerves - I needed no injunctions not to restrain my cries.” She didn’t hold back in her letter; she wanted to share everything with her reader and I instinctively understood that need: the need to talk about the experience, to make some kind of sense of it, to put it into perspective. I decided I wanted to know about other patients and surgeons through history and weave their stories into my own as well. And so this book project began.
If Fanny Burney could look surgery in the eye, then so could I. For a long time I had been asking my surgeon if I could visit him in theatre and watch him carrying out a mastectomy and reconstruction. I didn't feel that I could write accurately about surgery or educate others unless I had experience on the other side of the table. He always said “of course!”, but then the conversation would go no further. I decided to write a letter to the NHS Trust asking for official permission to watch live surgery, and when I showed it to him, he realised I was serious. It didn’t take long before I received a contract from the ‘Surgical Directorate’: I was being given permission to do work experience for a week, to shadow my surgeon not only in theatre, but to attend clinic with him as well. It was one of the most amazing weeks of my life.
As my research gained momentum, I became interested in references to fear and imagination along with the medical history. I began by reading Mary Shelley’s Frankenstein, published in 1818. At one point, I’d felt like a monster, mutilated and unnatural; my breast was a terrible disfigurement, and many of the women I spoke to about their surgery made exactly the same analogy: we all felt “like Frankenstein”. I wondered how women in the nineteenth century responded to Frankenstein, as it was written in their time and would have embodied many of their fears about the body and surgery and science. For the same reason I looked at the Brothers Grimm (who were collecting folk tales in the 1800s) and fairytales, and I even found a tale called “The Three Surgeons” which shed a different kind of light on what people thought of surgeons all those years ago. And I think, while Diane Purkiss points out in her book about the history of fairies, that fairytales and folklore are “born of fear”, they often seek a “happy ever after”, in which justice is done, and fear is conquered, which is perhaps what we are all searching for, no matter what time we were born in.
The time came to look for more patient stories — to look beyond Fanny Burney. As luck would have it, I was given some money by a Cornish organisation, the Minack Chronicles Nature Trust, to allow me to travel to London and spend some time there exploring surgical registers and case books in old hospital archives. I dug around in archives and libraries without always knowing what I was looking for; my faithful companions were stubby pencils and snake-weights that curled around the pages of faded, weather-beaten books. l spent days encountering poor nineteenth century breast cancer patients – milk carriers, cooks, needlewomen and boot-binders – and trying to decipher their prescriptions and piece together their lives before and after surgery, trying to put myself in their shoes, and most of all wondering about their thoughts and fears, hopes and dreams. Those patients made me feel unequivocally lucky. For starters, it was impossible to imagine what it must have been like to go through surgery without anaesthetic. I felt lucky to have been born in a time when we can have surgery with all the benefits of modern technology (and with the knowledge that we will sleep through it).
In a small windowless office, tucked away in a basement on Euston Road, the archivist at the University College London Hospitals Trust, Annie Lindsay, found a register – a large, brown tome with metal clasps to hold it closed - of breast cancer patients on the cancer ward at Middlesex Hospital dating from 1805 onwards. I noted that most of the patients did not leave the hospital. I sat with the hospital mace with which the porters used to guard the board room and ornately crafted clocks behind me, gifts from rich and grateful patients to their surgeons, although the women I was reading about were on the other end of the social scale. I found myself asking: if I had been born in that time, which patient might I have been? Would I have been one of the lucky ones? Without breast screening my disease would never have been found at an early stage. I was struck by one patient from 1826, thirty three year-old Elizabeth Jones, who had a tumour “the size of a small orange” in her right breast. But it was another patient, from 1838, who really resonated. She had disease in her left breast, like me; she found it at Christmas, like me; she had post-surgical complications with wound healing, like me, although, like the rest of the women treated before 1846 (when anaesthetics started to be used) she had surgery with no pain relief, and she was fortified with wine and beef tea to “give her strength” while her post-surgical wound festered.
I came back to Cornwall to write the book and now, every time I start up my computer and Clint Eastwood appears pointing his gun at me, I think about what might have been. I don’t know if my historical alter ego survived – it didn’t say in the cancer book – and because her name was (and is) a common one, it’s impossible to cross-reference her with census data or other sources. I like to think she went on to live happily ever after, but it’s more likely that she died sooner rather than later, either from her wound becoming infected, or from her cancer coming back, as was often the case in those days. Her name was Caroline Wilson. This book is dedicated to her.