One breast beats being dead

In late July 2000 I was “accidentally” diagnosed with breast cancer. I say accidentally because I had no visible signs of anything amiss with my breast nor did I feel unwell. On the contrary I had recently returned from an extended visit home to the Niger Delta where I was working with other activists and had spent three weeks researching violence against women and was feeling very positive and looking forward to starting a new job in August. I was living in London at the time and had gone for a routine checkup at a Well Woman’s clinic that included a pap smear and breast examination.

My diagnosis was a slow build up from the cursory breast exam by the breast nurse who noted that one of my breasts was denser than the other, through a series of mammograms, x-rays, local biopsy, MRI scan and endless prodding of both breasts, debates between an incompetent surgeon and (fortunately for me) a competent nurse as to the size and degree of the cancer.  In the space of a month, I had two operations. The first which cut out a 1/4 of my right breast and a month later having the full mastectomy.

At home in north London, 2000

Those are the medical facts that tell nothing of the despair, anger, disempowerment and fear that goes along with not just the cancer but the amputation of the breast. I found myself unable to comprehend the medical facts as told to me by my surgeon and oncologist who wanted me to have two different chemotherapies over a nine month period. My surgeon had wanted to perform the second operation immediately, but I asked for time that in retrospect probably was not the best decision as I was in a terrible state of distress and waiting prolonged the agony. Those four weeks were the hardest of my life.   My surgeon was wonderful as I was able to talk to him either by phone or visit his office at a moment’s panic of which there were many. My friends were very supportive, some incredibly so bringing me food and goodies whilst I was in the hospital and when I returned home. One friend came on a Saturday while I was recovering from the first surgery, with champagne and cake and we sat in the hospital garden and stuffed ourselves. Another time during the second surgery one of my nieces visited and asked if she could take me out for a couple of hours. It was hilarious walking through central London bandaged up with my drip placed in a shopping bag. I remember we went shopping and then to see the movie Shaft. Others I call “the disappeared”. They were unable to face their own fears enough to give a friend the support she needed.  I was in the midst of a battle with a spider web of cancerous growth eating away at my beautiful breast and I had, and continue to have, no sympathy whatsoever for their inability to respond to that.

Getting juiced

Getting juiced

Though they were able to talk about it, other friends and relatives didn’t always fare much better. One of the things that made me angry was when people would say “oh it will be alright” or “my sister-in-law had cancer and she is fine”. How can having your breast amputated and being injected with red poison be alright? One female relative had the gall and insensitivity to say since I wasn’t having any more children, I didn’t need my breast anyway! I was too hurt to respond and receded into my shell crying for hours on end. People who are ill do not need to be patronized in this way.

No matter how hard I tried, I was completely incapable of visualizing myself without my breast. I was convinced I would go insane and what I needed from family and friends was for them to talk with me about that not tell me I would be alright because that just wasn’t working for me. I was also fearful of going under anesthetic as for years I had suffered from “suffocating” dreams from which I would wake up just before I choked to death.

Maybe I was too harsh because people tend to lump all breast cancers together when, in fact, there are many different degrees and stages but if they had listened I could have told them this.

The nine months of chemo was hard, far harder than either operation and I would think twice if I had to go through the treatment again. I had continuous insomnia with severe headaches plus I have no way of knowing whether it saved my life or not. I feel the medical profession have a set of rules for cancer which to varying degrees consists of operate, poison and radiate. On the other hand, I also doubt those who believe that “being positive” has any influence on healing. Constantly asking people who are ill to be positive can result in terrible feelings of guilt and failure. Likewise comparing people’s illnesses is also counterproductive and somewhat insulting as illnesses don’t work like that. We are not all the same. Race, gender identity, sexuality, class, life experience, family environment and responsibilities as well as our bodies themselves, all contribute to how we experience our illnesses.

The insistence that women have reconstructive surgery or wear a prosthesis is a huge part of the “breast cancer industry”. The next sentence after being told I should have a mastectomy was not to worry because I could have a breast reconstruction at the same time. The plastic surgeon would move in as soon as the breast surgeon had finished cutting off my breast. I was considered a “problem” and “strange” because I refused to have a reconstruction not least because my left breast would have to be reduced so it would balance with my “newly moulded” breast. The idea of having lumps of flesh carved from my stomach or back and moulded onto my chest wall to look like a breast was almost as frightening and invasive as the mastectomy. At the time, I was so full of anger and hurt that I wasn’t able to think straight about the illness and choices. Everything seemed to be directed at a cover up. Silencing my illness and what it had done to my body. Even the partronising way people spoke and the weird soft tones as if speaking loudly would expose the world to the secrets of this illness.

Now I understand and appreciate this as a choice for some women and make no judgements on what women choose to do. However, this can be done in an open, honest manner whereby we are treated as intelligent people. Again in retrospect had I been given the time to think things through and the medical profession had engaged me as a thinking person, my choice would have been to amputate both breasts. It certainly would have solved the issue of whether or not to wear a prothesis that was the next assault after I turned down reconstructive surgery. I also wonder whether my back problems that are on my right side have something to do with the weight imbalance. A large amount of my back pain is in the area directly behind where my breast had been.

In “Power vs. Prosthesis” (the Cancer Journals) Audre Lorde criticizes the emphasis on breast cancer as a ‘cosmetic problem’ which can be solved by the ‘pretense’ of wearing a breast prosthesis which unlike other prosthesis has no function other than to make the woman “appear normal”. This concentration on the cosmetic..

“re-inforces this society’s stereotype of women, that we are only what we look or appear………….With quick cosmetic reassurance, we are told that our feelings are not important, our appearance is all, the sum total of self.”

For Lorde the wearing of prosthesis is an act of “cover up” and compliance with patriarchal forces.

“I refuse to hide my body simply because it makes a women phobic world more comfortable”….. On the contrary “women who have had mastectomies must become visible to each other… for silence and invisibility goes hand in hand with powerlessness”.

These are uncomfortable words for women who have chosen to go the “reconstruction” route or wear a prosthesis. However, the point she is making is that the decision to have reconstructive surgery or wear a prosthesis is more often than not a choice made by society rather than women themselves. Women are forced into choosing the prosthesis route by the medical fraternity and cancer industry as ¨a reflection of attitudes within our society towards women as objects. As for wearing a prosthesis or rather not wearing one, I have found this difficult on some levels and not others. For example at home or in a “personal space” wherever I happen to be staying not wearing one is fine and I have never worn one at the pool or beach. But initially going out one breasted was very extremely difficult. I also felt a failure and incredible guilt because I didn’t have the courage to openly live one-breasted like Audrey Lorde. For years I didn’t even have the courage to look at my wounded self in the mirror.

Time does heal and I no longer think about not having one breast or wearing / not wearing a prothesis. The important point is whether these preferences are really ours or ones forced upon us by normative values of how we should look and how much racism, homophobia transphobia play a part.  To not wear a prosthesis is a liberating act, to write about it re-inforces that liberation three-fold.

The truth of the matter is women do not want to see one breasted women because it brings them face to face with a possibility. Men do not want to see one breasted women because it is a sign of empowerment which openly challenges male privilege, power and patriarchy. The breast cancer industry does not want to see one breasted women as it compromises their millions of dollars in profits. (prosthesis, mastectomy bras, swimsuits and various cosmetic accessories cost double the price of regular ones). Politicians don’t want to see one breasted women because it reminds them and us that they have done very little to prevent cancer via legislation and regulation of industries which causes carcinogens in food, water, the environment and so on. The medical profession does not want to see one breasted women as it is a reminder that research into causes of cancer has been manipulated and compromised by corporate greed on the one hand and lack of funds on the other and of course reconstruction is a big part of the plastic surgeons work.

The more of us that remain invisible to all of the above including each other the easier it is for the world to continue in its denial of the extent and causes of breast cancer and cancer in general. So much that is written as testimony or “self-help” ignores all of the above and focuses on the illness as if it exists in a vacuum. This is additionally agonising for women who because of race class, sexual orientation and gender non-conforming do not have access to adequate medical treatment or are marginalised because of who they are by the medical professions.

What I have presented here is a very Western experience of breast cancer. The majority of women in the global south do not have access to healthcare let alone the choices of reconstruction, mastectomy and prosthesis. Being visible as one breasted women is overridden by their higher invisibility as poor marginalized women. So real freedom and power are about having control over our bodies and being able to make free choices without being pushed by self-interest groups.

In winter 2002 I packed up and left  for Spain, fresh air, fresh food, mountains, and peace, and so the road to recovery began!

Recovery: At home in Andalusia with my beloved Zami, summer 2003

Recovery: At home in Andalusia with my beloved Zami,  summer 2003

I found it difficult to find positive non-sentimental life stories on breast cancer – here are the ones I did read.
A Visible Wound – Julie Friedeberger, 1996
Before I say Goodbye – Ruth Picardie, 1998
The Wounded Breast – Evelyne Accad, 2001
The Cancer Jounals – Audre Lorde, 1980.
Because Cowards get Cancer too, John Diamond, 1998 (not on breast cancer but an excellent book none the less)
Audre Lorde and Ruth Picardie died of breast cancer in 1992 and 1997 respectively.  John Diamond died of throat cancer in 1999.

Recovery: Me and Zami winter in Andalusia

Recovery: Me and Zami winter in Andalusia

 

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