I bring my body to the page, to this project, and it is at once both mine and yours. Here, it belongs to everybody and to nobody. My body and I have things to say, stories to tell.
Much of what I have done with Breastless, with Self-portrait without Breasts, since the poems and photographs began to enter the public domain from 2008 onwards, has been about exploring who my body belongs to, who any body belongs to. Perhaps I used to assume that my body was mine, or I felt it surely must be mine. But is a person’s body, particularly a woman’s body, ever their/her own?
By opting for risk-reducing double mastectomy in 2006, it seems I did two (subtly different) things at once.
First, I exercised radical control over my body for a specific set of reasons and with particular aims in mind (I come from a breast cancer family – my mother, aunt and first cousin all had the disease and medical advisers told me I had a high risk of developing it too). Arriving at the point of having the surgery involved a long series of debates and decisions, via many fascinating and challenging discussions with family, friends, medical experts and others. I think that by deciding to undergo this surgery, and through living out my other decisions (no reconstruction, no prosthetics) I took back the right to belong to myself. As a human being, as an artist. And as a woman.
Second – and this is related of course but is not the same – I unconsciously took a major step towards liberating myself from dwelling in the expected body, the body that in some ways had belonged to others – parents, friends, peers, lovers, born and unborn children. Even doctors. Although I did not realise it until well after my surgery, that sense of others’ expectations of my body (and their demands on it) had significantly, and not always happily, shaped my childhood and my adult life up to the age of 50. Imagine my delight to find myself jettisoned into a surprising and often intoxicating freedom after double mastectomy in December 2006. And these years since the surgery have been times of energising self-development and growth.
Obviously I am not suggesting that every woman with a high risk of developing breast cancer should have both her breasts removed. But for me it so happens that this action has been life-changing in important and various ways. As a result, I have looked closely at my experience of the relationship between major body changes and what follows them. I have thought about how a person is challenged by the change and the loss involved in surgery such as double mastectomy, about what may be changed internally in response to the external change, about what survives intact, and about what might grow and develop.
Now, in 2017, almost eleven years after my risk-reducing surgery, six years after the publication of Excisions and the pamphlet Breastless, I want to present in one place: my creative work on the subject – the 32 poems that make up the cycle Self-portrait without Breasts; many of Laura Stevens’ photographs of my body before and after surgery; sections of my journals from the period of my surgery and recovery; a short film made at Ryerson; links to blog pieces I have written; and a few personal reflections as I look back and forward.
Originally, in thinking about publishing the fuller version of this work (the journal entries and essays here have not been published before, and only a few of the photos have been in the public domain) I had in mind a book. But the multimedia character of this work lends itself to online publication, and what better place to host it than the Life Writing Projects site at the University of Sussex. I am deeply grateful to Lyn Thomas and Margaretta Jolly for suggesting this home for Breastless.
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I will go back to the beginning, or near the beginning. My mother first developed breast cancer in 1972, when she was 47. She underwent radical mastectomy of the right breast in response to an invasive ductal carcinoma. Such surgery at that time involved removing all the lymph glands as well as part of the chest wall in addition to all the breast tissue. The surgery was brutal, though her surgeon, Richard Handley, was one of the gentlest men I have ever met. He was the son of the breast surgeon William Simpson Handley whose work on the dissemination of breast cancer via the lymphatic system was pioneering in its time.
My mother recovered quite well but developed further primary tumours in the left breast exactly five years after the surgery to remove the right breast, and so Richard Handley performed a second radical mastectomy in 1977.
From our vantage point of 2017 it is hard to imagine the shame and embarrassment surrounding breast cancer in the 1970s. Cancer, if it was mentioned at all, was referred to as the big C and always in hushed tones. All cancers were taboo, but particularly cancer of the breast, the organ most closely associated with feminine identity and sexuality. And we should remember that anyone given a diagnosis of cancer in those days could basically expect to die within a few years at the very most.
I nursed my mother after both operations. When she had the first mastectomy I was 16, still at school and about to take my A levels. I was 21 when she had the second operation, and I came home from university to take care of her.
There was silence in my family. No-one mentioned what was wrong with my mother. No-one talked about whether she could recover or when she might die. It was an unhealthy, deathly silence that allowed fear itself to grow like a cancer, and it fostered in me – her only female offspring – a constant anxiety that was rooted in the adult female form I had grown into between my mother’s first operation and her second.
In fact my mother survived breast cancer and went on to live another twenty-two years after her second mastectomy – years I soon came to see as bonus years. But she developed an abiding low-grade depression, and then dementia in her early sixties, which advanced rapidly. She died (effectively of her dementia) in 1999, aged 74, following a fall and a stroke.
I am convinced that there was a strong connection between the disgust and shame my mother felt towards her scarred body and the depression and dementia that crept up on her in the years following her breast cancer. These days I would even suggest that the cancer did play a part in killing her, it just took a circuitous route and many more years than it might have done.
Despite her illnesses, my mother was stoical, active and courageous after her operations and retained her sense of humour. She carried on skiing and went on driving her Lotus Elan (without a seat belt, which she was medically exempt from wearing because of the discomfort from her mastectomy scars). She even tried paragliding. But I don’t think she ever again felt herself to be whole, nor to be fully lovable. In that sense, her changed body did not belong to her – she did not ‘own’ that scarred and disfigured frame.
In the eyes of the world, her scarring was of course invisible, hidden as it was under prosthetic breasts and clothing, hidden too in her mind by the fact of her never talking about it. To the world she appeared to have the normal expected female form. But that body, the whole and unoperated body, was by 1972 a myth, a fantasy. Her outward appearance was window dressing. Underneath her clothing and the uncomfortable fake breasts she took off with her bra each night, she regarded herself as mutilated, unseeable. She was trapped between the world’s view of her as ‘normal’ and the disgust and shame she felt for the body no-one could see. This entrapment caused her enormous pain.
Perhaps inevitably, I too became somewhat trapped by my mother’s suffering and confused by the distance between the self and body she presented to the world and the naked self and body I knew was underneath. I willingly spent much of my youth looking after her, and when I wasn’t looking after her I was often worrying about her: when would the cancer come back, how long might she live?
In my twenties I also had the odd scare – lumps that had to be investigated and which, thankfully, turned out to be cysts. Although my breasts were not large they were difficult to examine because I had particularly dense breast tissue. This was to cause me problems later and became one of the factors in my decision to go ahead with double mastectomy – mammography is not good at spotting cancers in dense breast tissue and significant lumps can be missed.
My mother was 47 when she first had breast cancer. I realised after my own surgery in 2006 that as I had approached that age myself, I had fallen prey to a cycle of anxiety and release that was based around 6-monthly checks at the family breast cancer clinic I attended for many years. It went like this: three to four weeks before the appointment, I experienced low-grade anxiety rising to noticeable agitation several days before the visit to the clinic. Then mammogram, CT scan, clinical exam, usually resulting in huge relief. I would go home feeling a million dollars – no more checks for six months. Hooray! And I would often then forget to do my self-examination – not a good thing, obviously.
As time went on, and especially after my first cousin (who was three years my senior) contracted an aggressive ductal breast cancer in her mid-40s, I began to wonder what I’d do if – no, when – a suspicious lump was found at one of my six-monthly checks. And the more often I asked myself this question the more often I thought I’d probably want to have double mastectomy. One feature of an inherited breast cancer such as the disease in our family is that it is unusually aggressive, and multiple primary tumours tend to be the pattern. So ‘catching the cancer early’ is much more difficult. My cousin delayed just a few weeks in seeking advice when she found a lump, and regretted that for the rest of her (much shortened) life. She died of her cancer on 25 October 2010.
So by summer 2006, I was starting to talk to my consultant about the options for, in a phrase that has become popular recently, taking back control.
Well, there was the option of risk-reducing surgery. By having both breasts removed, I could in theory reduce my risk of getting breast cancer from somewhere between 50 and 85% to less than 10%. The risk could not be eliminated altogether, because it is impossible to guarantee surgical removal of every cell of breast tissue. My consultant was not, initially, too keen on this option. He had recently performed one such operation and, in its wake, the woman had suffered a breakdown. Alternative strategies on offer at the time included Tamoxifen and other pharmaceutical routes, and/or regular MRI scanning in harness with mammography as a way of remaining super vigilant. But MRI scanning for breast cancer, ten years ago at least, was known for its tendency to throw up false positives, which might prove to be both stressful and confusing. I knew I didn’t want to be on Tamoxifen or similar for the rest of my life if I could avoid it. That left the surgery option. I kept coming back to it, reading about it, talking to people, until the day some time in August or September 2006 when I realised I had made up my mind to go for it. That was stage one of the decision-making process. There were to be many more.
Making up my mind was easy compared with listening to my body. I knew that the ‘head’ decision was the right one but I wanted to find a way of listening to my whole person, especially my heart. I was not going to force a cerebral decision onto myself. Perhaps this was really the beginning of finding out who my body belonged to.
Next I spoke to Philip (my husband), my cousin (who was by now very ill herself but supportive of my process in the best and most generous way), close friends, alternative therapists, radiographers, cancer nurses and many others.
I spoke to my journal too, and that was absolutely vital. And I read endlessly around the subject of breast cancer, the cultural history of breasts, mastectomy, recovery. I dialogued with my body through a course of massage and writing sessions, which a friend and I designed together. I had several sessions with a counsellor I already knew, to focus specifically on the subject of the surgery and my fears and hopes around it. I observed my own body and the bodies of others. I listened to what my body was telling me – its aches and pains, its tidal states of panic and adjustment and again panic. For weeks I felt a lot of resistance, sometimes in the people I spoke to, often in myself. I wrote about the processes in my journal, I worked through them. And slowly, slowly, I was aware that the whole of me (not just my head) was accepting the wisdom of risk-reducing surgery.
All this time, throughout the autumn of 2006, I was also quizzing my consultant about what kind of surgery I could have, could my nipples be retained (they could not, due to the cancer risk as well as the risk of post-operative necrosis) and so on. He was kind and patient. I was encouraged to have reconstruction, but I was clear from the start I did not want it (longer surgery, longer healing time, more scarring, higher risk of post-operative complications, and many other reasons). My surgeon later accepted this decision with grace.
And so in October we talked about setting a date towards the end of November for the surgery. And I began to tackle the tasks of how to approach the reality of the surgery as well as making all the necessary work and domestic arrangements to accommodate my time in hospital and the weeks of recovery. There were also more medical tests to undergo – a final mammogram and ultrasound scan to check for any changes and to help plan the surgery, blood tests, consultations with an excellent homeopath who was part of the team and whose recommendations helped support my systems through the lead-up to surgery as well as afterwards.
There was another area of preparation I was keen to explore. I wanted to have photographs taken of my naked body, as mementoes and as a way of saying goodbye to my original shape. And a friend suggested making plaster casts too. Both these creative activities proved invaluable, in fact crucial, as I embraced and responded to the experience of surgery and its aftermath. Both sparked their own processes of adaptation to change, and they did so in ways that I am sure no other action could have done. Working with photographic images and with three-dimensional casts, and enjoying the playfulness that went with the work, brought my creative side to the emotional rollercoaster of the weeks leading up to surgery. I now understand that beginning this creative work – journaling, photography, casts – before the surgery was vital to my healing as I came through it. The confronting and naming of things involved in this work both exposed and reduced my fear and trauma, and helped me to see myself as an evolving, changing person. It also provided the ground for my later writing of the poems that together make up Self-portrait without Breasts.
One last hurdle caused me to postpone the operation for a few weeks. My surgeon let me know that he had heard of a new genetic test that might determine more accurately my actual risk of getting breast cancer, so that I could reconsider my options with more insight. Up to this point, the genetics team at Guys had repeatedly tested for known breast cancer genes BRCA1 and BRCA2 in the DNA of all four women on my mother’s side of the family – my mother, her sister, my cousin and myself. In our material, neither gene had been found to be faulty, but the testing was improving all the time, and maybe there was a chance at last that we would know more about our genetic inheritance. It proved to be a false lead, but one that I have never regretted following up. And in the years since my surgery, researchers have found many more genes linked to inherited breast cancer – Gareth Evans mentions these in his essay ‘Inherited Breast Cancer’ which was written for the original pamphlet Breastless (Pighog, 2011) and which he updated at my request in February 2017, knowing that the essay would be included as part of the project to be republished in a new and fuller format.
One of the benefits of my foray into genetics was that it put me in touch with James Mackay who was not only brilliant at explaining the whole business of genetics and the labyrinths of statistical likelihoods of cancer, but who became a staunch supporter when I was starting to do public readings of Self-portrait without Breasts. He generously appeared alongside me at several Medical Humanities events, including one at Exeter University in November 2012 when floods had made it almost impossible to travel. I owe James a huge debt of gratitude and I was particularly touched when he announced in public at an event at St Georges that I no longer needed him!
The operation date was rescheduled for 11 December. I was as ready as I was ever likely to be.