"...Three years ago I was diagnosed as having breast cancer. Like so many women before me I submitted myself to the medical machine, going along with the treatment as far as to have a lumpectomy performed on me. The feelings generated in the circumstances surrounding this were so totally negative, that I felt, come what may, that I had to get off the production line set up by the medical orthodoxy. So I did. I wanted to write here a 'happy ever after' story, but unfortunately this is not it. Nonetheless I feel it is worth writing about what has happened between then and now.

I am not better, in spite of beginning to take responsibility for my own health, and working out an integrated programme of health care with others. On the other hand, although I still have active cancer, and my general health is not good, I feel more in control of my life than at any time previously. This has come about because of the questions I have been forced to ask myself about my belief system, my lifestyle and my attitude to my mind and body. As a result I see myself neither as 'heroine' or 'victim', but merely as a person in struggle, changing and adjusting daily, and trying to keep a state of equilibrium which will allow me to function optimally, at the same time as I strive to regain health.

When I first realised I had breast cancer I felt that I had been stricken and marked in some way which left me outside the experience of everybody else. The labelling of the disease was tantamount to having a curse put onto me. I went home and waited to die. Fortunately, friends were unable to accept this passivity on my part and plagued me with literature which seemed to offer other ways through the illness and initially I took myself off to the Bristol Cancer Help Centre. Here I was introduced to a philosphy of patient-centred medicine, whole mind and body therapy, and the idea that we can begin to be involved in trying to have a say over how we become well again, or manage our disease to our own satisfaction.

Apart from the fact that, thirteen years ago, my own mother died of liver cancer six weeks after a mastectomy, (a fact I had completely disavowed, of which I had no real memory, in spite of being present and an accomplice to her euthanasia), I had no knowledge of the disease apart from a few anecdotal horror stories from friends and relatives, and the media coverage of various 'victims' of the disease. In spite of having earned myself a first class honours degree as a mature student, I still had no clue as to how my body worked, or even where my liver was situated.

I wouldn't say that I ever saw myself as an 'ill' person. Yet in retospect, illnesses of one sort or another had dogged most of my life - most especially asthma, hayfever, eczema and bronchitis. These don't sound much but were like a long running soap opera, appearing regularly at times of stress, exhaustion, over indulgence, environmental extremes - always being treated by drugging or surgery. At 28 years I developed an ovarian tumour (14 pounds weight at the time of my operation), as a result of the 'side effects' of steroid treatment for asthma. And still I didn't learn. Years later, after two attempts to detoxinate myself through naturopathic medicine (my liver having virtually packed up) and each time running out of money to continue with such private treatment, I eventually had breast cancer diagnosed.

The treatment offered for this was a mastectomy, and if necessary, a further mastectomy if it developed in the other breast. Nothing more or less. It never occurred to me until I was in hospital waiting for the ward rounds with the results of the needle biopsy, that I had any rights in the matter. That I could just put my clothes on and go home. Refuse their treatment. That is until the incredible insensitivity, lies, evasiveness and uncaringness began. What happened to me is hardly any different from what other women have told me, so it was fairly 'normal' procedure it seems. To me it disgusted me so much that I finally found voice to refuse a mastectomy, after bedside arguements at the last minute with 'my consultant', who finally conceded that I have only the tumour removed, and that we'd take it from there.

Excerpted from SPARERIB No. 163 FEBRUARY 1986

"...By using photography, throughout my illness, it meant that certain facets of my history were planted squarely and visibly in front of me. Facing up, at last, to the knowledge that my mother had died six weeks after the removal of a breast, at least in part due to her liver cancer not being diagnosed, my faith in orthodox medicine vanished. I now found myself in conflict with the medical profession. I finally found the courage to say that I wanted minimal surgery, no chemotherapy or irradiation (even though I was told that I was virtually signing my own death warrant). I suddenly found myself saying 'No', yet with nowhere else to go. I knew nothing!

Thus began a journey of self-discovey - a s it has been for many others - starting at the Bristol Cancer Help Centre. From it has come a complete restructuring of my life. I have rejected a medical profession whose basic metaphors of disease are those of WAR: to cut, burn and chemically destroy the 'problem': to get rid of the 'trouble' (in my case a malignant tumour); to knife it out whilst not encouraging me to ask why it is there. Given that research has indicated, for example, that 90% of known cancers are preventable, and if such cancer is the embodiment of psychic, social and environmental dis-eases then it makes little sense for the medical profession to merely remove or obliterate such 'signs and symptoms' when our bodies 'speak out'. And if patients, as a result of treatment only of their symptoms - ignoring their feeling of helplessness and their fear - become psychologically disturbed or depressed, and yet they receive only further psychotropic chemical drugging, it is hardly surprising that they do not find it easy to begin to define and articulate new needs, for which they need a voice either individually or collectively.

If I were to ask myself the one thing that I have learned as a result of having cancer it is just simply that I never realised how powerless I really was, and how few rights in the world I had, until a young man in a white coat whom I had never seen before surrounded by others similarly clad, stopped at my bedside in a provincial English hospital, ruffled through some notes clamped to a board, leaned over me and drew a large black cross above my breast, uttering those memorable words, "That's the one that is coming off!" From that moment on I was on total alert. I began to search for a treatment which would recognise me as a whole human being, and not as parts to be disposed off; one that would take account of my physical, psychic, social and spiritual self. I even investigated my legal position in relation to suicide and euthanasia.

In the end I opted for a practice in north London which offered me traditional Chinese Medicine, linked to Jungian therapy. Strange bedfellows! Traditional Chinese Medicine is an integrated system of treatment in which diet, exercise, acupuncture, massage, forms of meditation and weekly herbal decoctions are offered. This treatment is available as one of the choices available for breast-cancer patients in China and has a long history. It is not available on the National Health Service nor is it being systematically investigated by any of the major hospitals. It does not offer a 'cure', but I am pleased with the way in which it has allowed me a relatively normal life in the last few years.

Right from the start of this particular illness I realised that there was to be no magical cure for the ways in which I had unknowingly abused my body with bad diet, lack of rest, overstress, over-work, continual conflict and unhappiness. In that sense then, I was not seeking a cure, but merely a way of learning to live differently and more harmoniously, within myself and with others. But how is it possible to transform my conflict model of life, when I see massive injustices and inequalities - in relation to people's race, gender, sexuality, class, age and abilities - systematically and institutionally maintained?

Excerpted from the chapter "No I can't do that, my consultant wouldn't like it" in Silent Health: Women, Health and Representation (published by Camerawork, 1990).