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MIHE Blog News, views and insights from Macmillan International Higher Education

A Cancer Glossary By Emily Underwood Lee

by Emily Underwood-Lee 2nd June 2019

Emily Underwood-Lee shares her 'cancer glossary'. This glossary is part of a series exploring people’s individual responses to cancer, commissioned by Theatre & Cancer author Brian Lobel. Find out more about the series

Pity:

I’m not fine, thing is I’m no less fine that anybody else might be. Pity makes us less and confirms our place as ‘the other’ or ‘what you are not’. We are not pitiable, we are threatening and terrible - the reminder of what you or someone you love will go through or once went through. We do not need pity, which diminishes and separates us into the two factions (the ill and the well), but we all need compassion and empathy.



Desire to create a narrative:

When the only way I can make sense of the world I find myself thrust into is to craft a story or performance. When I write my cancer story I take back power. I control the narrative direction, the role I want to play, and I decide the ending; even if it turns out this is not how things pan out in my clinic appointments. Making a narrative makes an alternative a reality, even if only for the short time I am on stage.



No dispassionate audience members:

I toured my two ‘cancer shows’, Patience (2009) and Titillation (2010), for six and seven years respectively. At every single performance at least one audience member (but more usually several audience members) sought me out afterwards to tell me their own breast cancer story, or that of their mum, sister, aunt, lover, friend.

No dispassionate makers of cancer work:

When the two shows I have made about my cancer were meant to be a trilogy but I just do not want to ‘go back there right now’ and right now has already lasted years.


Staring and passing:

Unlike many other diseases, years after breast cancer, whether we chose to have reconstructive surgery or not, women who have undergone mastectomy will bear publicly visible marks of their cancer. We can have breast reconstructions, we can wear high necked tops to cover our scars, we can choose to wear prosthesis. We can pass. Or we can join Audre Lorde’s “army of one-breasted women” making visible our difference, exclaiming our embodied experience and inviting the stare. I want to accept the rallying call, to step out confident in my newly visible cancer-marked body. Most times, I’m too exhausted to join the army.


Shame:

At a recent appointment to have my lymphoedema managed I was weighed. The nurse looked at me as I stood on the scales, her head sympathetically angled to one side, and said “Oh dear, perhaps you had better lose a bit of weight, I’d hate for your cancer to come back and you to know it was all your fault”. She then moved on to talk about my lymphoedema in relation to my “obesity”. I know that my cancer was caused by the BRCA1 gene variation that I was born with and, regardless of my weight or any other environmental or lifestyle factors, the chances of me developing a malignant breast tumour were over 80%. I know that my lymphoedema was caused by the removal of my lymph glands. I know that research which highlights obesity as a causal factor in cancer is flawed and does not take account of the many times that people are misdiagnosed due to doctor’s (and other gatekeepers’) assumptions or prejudices about their patient’s weight - symptoms overlooked and put down to a side effect of obesity rather than any malignancy that may be present. I have worked with cancer narratives for a decade and regularly work in a professional capacity within the NHS. I understand hierarchies and social capital and pecking orders. Yet despite all my knowledge and privilege I was unable to defend myself against this nurse’s accusations about the self-inflicted nature of my cancer. I was so overwhelmed with shame that I could not speak. What if I had caused my own cancer? What if this was really all my fault? Somehow it is still too hard to fight the cultural construct that on some level we “brought this on ourselves” and that we have cancer because we are not good enough.


Victims and heroes:

Although I am victim to the environmental and genetic factors I cannot control, and I am the victim of a neo-liberal system where billions of pounds every year are spent trying to coerce me into making lifestyle choices that are not in my best interests, I am not a cancer victim. I am not a cancer hero either. I am someone living with the physical and emotional marks of cancer. I did not fight a battle or wage a war and I’m certainly not courageous.


Grief:

I am grieving for the life I might have had if this cancerous interruption had not occurred. This grief was acute at first - reducing me to tears, literally and psychically shattering me. A decade on I still grieve for my lost future every day. My grief is quieter now, more like a lingering sadness than the sudden blow it once was. Cancer steals a life from us; sometimes it steals a life by killing us, more often it steals the life we had imagined we would have. When I received my first cancer diagnosis I was pregnant. An intended pregnancy is perhaps the ultimate act of hope. We must believe in a future that has some value if we decide to bring a child into being. We must extend ourselves imaginatively beyond our own lifetime and think that the world has something to offer to our child immediately and 20, 50, 80 years beyond. My cancer changed the future I had imagined for myself and for my unborn baby. My cancer treatment also cut away the genetic possibility of more babies. When my ovaries were removed all my own potential as a biological mother to more children was removed with them, along with the potential of the imagined children I might have had.


Keeping positive:

have lost count of the amount of times I have been instructed to “keep positive”, “keep my spirits up” and “keep fighting”. Sometimes I want to mope. Sometimes I have only enough strength left to lie down and give in. Sometimes anger or despair are entirely appropriate emotional responses. Leave us to our anger. Let us linger in the darkest place. Let us cry and let us sleep. We are suffering and an incitement to cheeriness, however well-meant, is sometimes an act of aggression that we do not have the resilience to bear.
Featured image by Bia Andrade. Available on Unsplash via the Unsplash license.