Coping With and Thinking About the Big C
Coping With and Thinking About the Big C: The Experience and Reflections of a Young Feminist after a Breast Cancer Diagnosis
‘It is cancer’.
An experienced surgeon with grey hair who seemed like the chief of the clinic, sitting in front of me, staring straight into my eyes, announced the result of my biopsy. ‘O…Kay.’ These were the only two syllables my mouth could utter at that moment. Soon my face turned pale and my body started to sweat and tremble while I squeezed my friend’s hand tightly. Certainly, the surgeon and the senior nurse standing by were familiar with such situations – when someone hears devastating news which turns one’s life upside down. They let me lie on the bed in the corner of the room. I could barely hear the rest of information they tried to give me. I then cried and murmured: ‘What is the survival rate?’ They told me this should not be discussed today. Then they comforted me and sent me out of the clinic.
It was a cold, windy and dark day in December of 2018. During 2015 to 2017, there were around 55,200 new breast cancer cases in the UK each year. According to WHO statistics, in 2020 2.3 million women were diagnosed with breast cancer and 68,500 women died from this disease globally. About 1 in 8 women in the US will develop invasive breast cancer over the course of their lifetime. These statistics try to deliver the information that breast cancer is the most common cancer and in general its prognosis is better than other dangerous diseases. However, when it comes to the individual, it is still an agony which no one can process immediately.
I had lumpectomy two weeks after the diagnosis. I recovered during the Christmas holiday and thought to start a ‘new’ life to embrace 2019. But things never go the way you expect them to. I was told by the surgeon that they had failed to get a clear margin in the operation and, on top of the tumor, they detected another tiny bit of malignancy in the area of the nipple. Therefore, mastectomy was the only remaining choice.
My female friends and I held a small farewell party to my right breast – the room was decorated with tiny multi-colored lights; we had chips and drinks, and one of my friends used a lipstick to write ‘11 Feb 2019’ on my breast. That’s the day I was scheduled to say goodbye to my breast. I have been trained as a feminist researcher and I therefore obviously understood that ‘losing a breast means a woman can’t be complete’ was a wrong and patriarchal idea, but I couldn’t help being sad, not because I was not presented as a ‘complete’ woman, but because I was losing part of my body that had accompanied me for so many years.
The surgery went well and I was in good hands, except for the anaesthesia making me puke after waking up. I actually felt no physical pain while wearing a large dressing covering the wound. Because of the haematoma and the retention of the fluid, the feeling in my chest was weird, as if a big water bag was hanging on there. When the dressing was ready to be taken off, the skin of my chest became firm and the bone under the skin appeared indistinct. Since I didn’t opt for breast reconstruction immediately (because I was not sure what the subsequent treatment would entail), I was sent to a clinic session to help me choose a prothesis. I have to say it is magic that the prothesis makes ‘everything look the same’ when I wear appropriate clothes. But I know that everything has never been the same since the diagnosis. I am reminded of Audre Lorde’s argument on prothesis in her writings about her own cancer journey: ‘I believe that socially sanctioned prosthesis is merely another way of keeping women with breast cancer silent and separate from each other’ (Lorde, 1980, p.16). Lorde called for ‘an army of one-breasted women’ to translate the silence into language and action, to make women with breast cancer visible to each other. Despite the fact that The Cancer Journals was first published 4o years ago, I feel a strong connection with what Audre Lorde thought. Breast cancer is a gendered disease and the body marked by the mastectomy is socially excluded from a ‘standard’ woman’s body. I have to buy special bras, sport bras, and swimming suits which have a small pocket for my prothesis, even though it is muggy and stiflingly hot in summer. It took me a very long time to dare to touch the long scar on my chest. It is numb, as the nerve was cut, leaving a wasteland where everything has been destroyed.
There is no doubt that the hardest and most dangerous treatment for cancer is chemotherapy. Adriamycin, a chemo medicine, has been called ‘the red devil’ globally. Its generic name is doxorubicin. The nurse who administered the drug to my vein told me that the name is derived from ‘ruby’ – a stunning but miserable red. It is so toxic that I was suggested to flush the toilet twice to avoid the harm to other people of my toxic urine. My oncologist told me it has damaged my heart, which will be weaker than others in the long term. In my second cycle of chemo, every single hair started to fall out. It made me finally become a classic cancer patient – in a cinematic sense – turning bald, vomiting, feeling fatigue all day. I had countless pills, countless injections (some even done by myself) and countless pain. In the great works of great women like Susan Sontag (1983) and Anne Boyer (2019), who shared their cancer experiences, the similarities between them indicate that progress to eliminate the side effects of chemo is not easy.
Without radiation, I took almost nine months to finish the active treatments and another ten months or so to recover my immune system and energy. I was prescribed to follow a 5-year hormone treatment, a tablet a day. Although it sounds very simple, it does bring different kinds of side effects – I experienced the symptoms of menopause, such as hot flushes, depression, and joint pain. It was awkward to talk about these side effects with my friends, who are mostly in their thirties. Age has been a factor that alienates young cancer patients from cancer community. In the promoting materials of cancer care information, most of them used middle-age or old people’s images as the ‘typical’ outlook of cancer patients.
Social media has become a place that I tried to find someone like me. As my first language is not English, I looked for forums, online groups, and for individuals both in and outside the UK. I found that social media has increasingly become a vital approach for young breast cancer patients to look for mutual assistance, vent their emotions, and encourage each other, especially in regions that lack social cancer support groups like the Breast Cancer Haven or the Macmillan Cancer Support. They spontaneously share their stories on different social media platforms in the forms of text, videos or live streaming. Some of them become close friends, engaging in each other’s personal lives. However, I also saw the risks that social media brings to this group, such as exposing their breast cancer patient identity in a public space, being questioned about when they are not seemed like ‘a standard cancer patient’, and being traumatized repeatedly when hearing the death of one of the group. This is something worthy of further exploration, as is the double-edged sword that social media is in young cancer patients’ lives.
Confusingly, there is still no proper term for cancer patients who have been discharged from hospital. ‘Cancer survivors’ is a term that has infuriated many people and has been criticized by people with cancer. It sounds like we cancer patients have gone through the same journey – beating cancer on a battle field and conquering the killer. Such battleground terminology – such as ‘fighter’ ‘warrior’ – highly disregards the diversity of cancer type and stages, as well as the fear of reoccurrence. We never dare to claim we are completely cured or that we have won a victory. We have been back and forth between feeling nervous and feeling relieved, when every 6-month or annual clinical review becomes the node that divides our emotions, and even our lives.
‘Back to normal life’ is in fact the most challenging part for cancer patients who have left the ‘safety net’ of hospital. Cancer is far more than an illness; it is a social issue. Sontag (1983, p. 1) indicates that people with chronical illness or contagious disease have been clearly marked and excluded:
Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
At the moment of being diagnosed, prejudice, sentimentality, punishment, discrimination, marginalization and exclusion are soon attached to the patient. Especially when the idea of genes has become popular with the masses, cancer has been taken as the symbol of the ‘problematic gene’ – an original sin that is carried by cancer patients. The underlying meaning of cancer has gone far beyond a collection of a group of restless cells. It is equated with the troubled fear of human beings: abnormality, pollution, misery, uncertainty and being withered. It is sometimes a stain on the recruitment and marriage market, and it becomes a simple, seemingly sympathetic excuse to turn cancer patients away.
Many cancer patients, especially young ones, have a strong sense of shame after leaving hospital. We are told that we should be grateful because our body can survive (for now). We are told that we should release every stress because the failure to regulate mental stress is the ‘main reason’ for our illness. We are told that we should try our best to make ourselves happy because we ‘need to’ forget those dark days. If we cannot achieve these goals, which all individuals should be responsible for, we are viewed as failed and useless patients who are incapable of prioritizing and managing our health.
Amplifying the role of self-confidence, optimism, and staying strong in cancer survivorship has become the mainstream narrative of telling cancer stories. In a documentary called Crazy Sexy Cancer in 2007, the filmmaker Kris Carr, a cancer patient, relays not only her own story but also the experiences of other young women with cancer to generate and promote the model of optimistic and self-empowered patient-hood. She claims to the camera that ‘I am not sick’ many times and one doctor’s opinion on the fatality rate of her disease as nonsense. She abandons her old unhealthy lifestyle choices and embraces her new self, as she later describes: ‘Even though I have cancer, I have never felt healthier.’ Waples (2014) views this as ‘a postfeminist project’ driven by ‘an individualist ideology and a commercial and cosmetic self-construction’ (p.51). Waples indicates that the narrative of the documentary valorizes a can-do individualism and promotes a monolithic subjectivity, and mirrors such narratives as Katie Roiphe and Camille Paglia’s critiques of ‘victim feminism’, which problematically assumes that all cancer patients have equal access to the means of empowerment and omits the institutional and systemic injustices caused by race, gender, class and medical condition in different regions. The narrative of emphasising optimism and toughness subtly imposes a demand on cancer patients – you must be strong, which leads to a shift whereby ‘it is the individual control of the disease, rather than the social control, that has been foregrounded’ (Orgad, 2005, p.155).
October, breast cancer awareness month, has also been something that puts breast cancer patients in an awkward position. It seems to be a ‘carnival’ for breast cancer patients. Although its initial goal is to call for increasing awareness of breast cancer and support for breast cancer research, when overwhelming pink products sweep the world in October, the pink ribbon and breast cancer are commercialized. As discussed by Sulik (2011), who researched pink products and ‘pinkwashing’, anyone can tie a pink ribbon to anything and claim that they are donating money to breast cancer related activities and research, but no one knows where these profits actually go. For many companies, the pink ribbon and breast cancer are just a marketing approach occurring every October. This reminds me of the ‘economy of visibility’ proposed by Banet-Weiser (2018), who analysed the logic of popular feminism in popular culture – visual representation is less than a means to achieve political goals but becomes the beginning and the end of political action. Banet-Weiser indicates that the visibility of political categories like race and gender, ‘is what matters, rather than the structural ground on and through which they are constructed’ (p.23). Such a framework is useful for thinking about the commercialisation of breast cancer. The ubiquitous pink products and pink ribbons symbolize breast cancer as visible and trendy, and they recognize the disease in a light-hearted way. Such commercialization trivializes the complexity of breast cancer and the ‘carnival’ of pinkwashing limits public’s understanding of the real experience of the treatment of breast cancer patients, their lives and even their deaths. The problems that persist in the medical procedures and aftercare are selectively omitted.
Clearly, this piece of blog is not something academic, but just some of my thought flows since my diagnosis. I will be glad if it can bring some courage and reflections to people who have had or are having a difficult time. Breast cancer needs to be looked at and thought about more from a sociological and feminist perspective rather than just putting the spotlight on medicine and empathy.
***
Joanna is a final year PhD student. Her research interests include feminism, digital media and popular culture.
References
Banet-Weiser, S. (2018). Empowered: Popular Feminism and Popular Misogyny. Duke University Press. https://doi.org/10.2307/j.ctv11316rx
Boyer, A. (2019). The undying: a meditation on modern illness. UK: Penguin.
Lorde, A. (1980). The cancer journals (1st ed.). New York: Spinsters, Ink.
Orgad, S. (2005). ‘The transformative potential of online communication: The case of breast cancer patients’ Internet spaces.’ Feminist Media Studies, 5(2), 141-161.
Sontag, S. (1983). Illness as metaphor. UK: Penguin Groups.
Sulik, G. A. (2011). Pink ribbon blues: how breast cancer culture undermines women’s health. New York: Oxford University Press.
Waples, E. (2014). ‘Emplotted Bodies: Breast Cancer, Feminism, and the Future.’ Tulsa Studies in Women’s Literature, 32/33(2/1), 47–70.
