‘An Uncertain Prognosis’, by Emilie Collyer

chemical bottles

I follow the run up to the US election largely via social media, the three debates and the Saturday Night Live parodies of the debates. Like most people I know, I almost enjoy the horrific buffoonery of Trump and celebrate each time he makes another monumentally offensive gaffe. The bus recording. Threatening to imprison Secretary Clinton. I watch an interview Clinton does with Mary J Blige where Clinton talks a lot about children and families, opportunity and community. I know which world I’d rather live in. Surely this is a lay down misère.

My GP agrees the lump in my breast is worth getting checked. I first felt something strange about twelve months ago, had it checked out and all was clear. To me this feels like the same lump transformed, a restless satellite that has moved or grown. But perhaps it’s a new one. Anyway now I can see it on the surface. An elegant, tiny slope underneath puckered skin. I wait until after my period. Twice. In case it’s just hormones making the lump dance. But it’s pretty clear this lump is not one of those many tender, sliding cysts that hovers within the domes of my breasts.

The polls, the pundits, the media, the celebrities, the comedians, all of them lean towards Hillary Clinton. This is for many reasons but the primary one is that of course no woman in her right mind, Republican, Democrat or otherwise, would vote for Trump.

The shock of cancer is its unknowability, how it sneaks up. Each stage is a new level of unknowing. Then knowing a little. Then more unknowing. The big question, the one that there is no answer to but that naturally presses, is why:

It’s because I don’t have children.

It’s because I worry too much.

It’s because my sports bra is too tight.

It’s because I don’t eat as well as I could. I got 26/100 in that stupid CSIRO online test which was a surprise because I think I eat quite well.

The shock waves on social media start rolling from about midday on Wednesday 9th November. Friends on my Facebook timeline feel sick, scared, angry, sorry, incredulous. It reminds me of waking up on September 11, 2001. A deep well of new fear for the world.

A friend who lives in the US posts about her sadness and the need for kindness and connection. She also writes about the need for action and vigilance. She says we must seek out the cancers that are racism and sexism and not let them grow, not let them take over the world. A few days later I see talk-show host Jerry Springer being interviewed on BBC’s Newsnight and he also refers to the deeply embedded racism in the US as a cancer.

Post-surgery the news from my specialist is positive. The cancer doesn’t appear to have spread. I will have follow up treatment as a protective measure, to make sure no tiny cancerous cells have slipped into my bloodstream. This will be a few months of chemotherapy, then radiotherapy and longer term hormone treatment.

The fallout of the US election has no treatment plan.

Shock reverberates into aftershock as Trump gets busy. His cabinet appointments, his executive orders, his rhetoric, his attacks on the media, his Twitter feed. It’s the kind of information that can grip your gut with genuine terror for what might become of the world. From the realities for people both in the USA and elsewhere who now feel so unsafe, to the too-big-to-contemplate questions around global antagonism and nuclear proliferation.

I feel frightened waking up with this new presence in global power. I try not to but can’t help imagining the worst-case scenario. How Trump’s protectionism and aggression could spark serious global conflict on a massive scale. What does this mean for our future? It gives me a floating sensation akin to how I felt the morning after my diagnosis. Anxiety provoked by a potentially life-threatening situation that I don’t know all the facts about and have almost no control over. I imagine there must be those who are waking up feeling safer and more secure with Trump in power. How can this vast chasm between perspectives ever be reconciled?

Chemotherapy is a daunting regime. The word carries as much drama as cancer. There is a lot of information to absorb. I have an introductory meeting with the oncologist, then a meeting with the breast care nurse. The nurse gives me a show bag containing products for my mouth, a thermometer, a drink bottle, cap, scarf, information sheets about chemo, side effects, diet, and a lot of pamphlets for wigs and scarves. Yes, the oncologist confirms, this is the ‘nasty’ kind of chemo that will cause hair loss.

The counter-intuitive aspect is that the cancer never made me feel sick. A small lump in my breast that was easily removed. Whereas this process of ‘protection’ takes the form of putting poison into my body. It will hopefully kill any cancer cells but in the process will kill normal, healthy cells as well, hence causing me varying degrees of discomfort and pain.

The US presidency and my cancer both lead to a preponderance of Googling. Fact sheets, forums, opinion pieces, articles, research, analysis, predictions. I read somewhere that a government body—like a human body—goes largely unnoticed by the populous when functioning well. It’s only when things go wrong that attention is drawn. If this is the case then Trump’s America is going through high-level scrutiny right now.

Google is the echo chamber where you will always find what you are looking for, have your own opinions bounced back. It can also be a rabbit hole where you get trapped in someone else’s chain of logic.

I can read hundreds of articles that agree with my fears about Trump. I can read equally as many articles about what causes cancer, from toxins in water to types of food. The problem with all this information is that it’s flat and often reductive – opinions rather than nuanced discussion.

Online media for the most part is about conflating complex ideas rather than teasing them out. Absolutes abound. ‘Alt-right’. ‘You people on the left’. ‘Political correctness’. ‘Fake news’. These are divisive terms. You have to position yourself in relation to them. To take a side and label the ‘other’ as ‘enemy’ can provide a level of comfort but does it offer much in terms of problem solving and conflict resolution?

Conversely, cancer is often described in combative terms, particularly as a ‘battle’. This rises to the surface in a new way now I am personally affected. It’s problematic. To say that a person lost or won their battle with cancer implies it was a fair playing field in the first place. It feels more to me like my body is a host to the cancer, and now also to the chemotherapy and other elements (radiation therapy, hormone treatment). The battle is between the treatment and the cancer, my body bearing the fallout of both aggressive forces.


Image courtesy of Sarah Walker.

I learn that chemotherapy has its origins in chemical warfare. Research carried out around the Second World War on bodies that had been exposed to mustard gas revealed that a primary cause of death was the destruction of bone marrow and the subsequent reduction in white blood cell count. From this it was surmised that an adapted version of the chemical could be used to target other kinds of rapidly dividing cells such as cancer cells. Tests were first carried out by creating lymphomas in mice and then treating them with mustard agents. When this proved successful, an adapted mustard gas was trialled on humans with lymphomas and was successful in reducing tumour mass and decreasing mortality rates.

My chemotherapy treatment program is four treatment cycles, one every three weeks. Each cycle provokes a slightly different range of side effects although some features are consistent. The five or so days immediately after I feel like I’m coming down with a flu or terribly hungover. The chemicals zing through my blood. My mouth gets coated in a thick white paste and the edges of my tongue pucker into small welts. Indigestion, joint pain, nausea, headaches, dizziness, peeling skin, hair loss are all part of the package. I have a brief glimpse into what it would be like to die from poison. It wouldn’t be pleasant.

A kind of citizen’s battle cry develops in response to the Trump administration. Every statement and action that comes from Trump is met with opposition. Sometimes these are just words but many counter-actions also spring to life. The Women’s March on Washington is believed to be the largest single day protest in America’s history. Not to mention the hundreds of marches in other parts of the USA and across the world that happened on the same day.

One of Trump’s first Executive Orders is to reinstate the so-called Mexico City policy, also known as the ‘global gag rule’, which prevents US funding from going to any organisation that provides or promotes abortions. Responses are immediate. The Dutch Government commits to the establishment of international abortion funds. The Melinda Gates Foundation pledges to provide birth control options to 120 million women around the globe by 2020.

A side effect of chemotherapy is that I go into ‘ovarian shock’. This takes the form of two very heavy and long lasting periods (one lasts for two full weeks) and then a cessation of menstruating. I think about that small lump and its huge impact. About the radical effect of this treatment, which is designed to protect my body and extend my life, but which does its own kind of profound damage. My experience is mild compared to others. I can see why some people would choose to stop chemo and ‘take their chances’ with cancer or move into end stage of life treatment-free.

A good friend who has been through both chemo and radiotherapy is now on a trial of immunotherapy. This seems to be the way cancer treatment is heading, stimulating the body to attack cancer cells rather than sending poison in from the outside. The word battle echoes for me when I am with her. Not because she uses it but because I see how much toll two years of treatment has taken on her physically and emotionally – the relentless energy required to withstand the side effects and maintain a positive outlook. In the future people may look back in wonder at the brutality of chemo.

Executive Order: Protecting The Nation From Foreign Terrorist Entry Into The United States is announced and swiftly labelled as a travel ban targeting Muslims. The order is robustly criticised by multiple corporations including Apple, Ford, Google, Coca-Cola and General Electric. Companies issue statements saying they will provide support where necessary to existing employees and in some instances, such as Starbucks, adopt an overt policy of employing refugees as a response to the ban.

Trump is not the only world leader enacting brutal orders. The passing of a Russian bill that reduces the penalties for family domestic violence, effectively decriminalising the act, is as disturbing and terrifying as anything coming out of the US. It speaks to a pervasive cultural attitude that devalues the bodies and lives of women and children. I don’t know how a corporation, other country or international agency can counteract this step.

The most disturbing continuous side effect is that water tastes horrible and the thought of drinking it makes me want to gag. This is especially problematic as I am under strict instructions to drink a lot of water in the days post chemo to help flush out my system. I find the aversion curious. Almost as if my body is rejecting one of its fundamental life sources.

I meet with my oncologist to discuss the anti-hormone treatment I’ll need to take for five years or more because estrogen helped the cancer grow. This may involve ovary suppression or removal, which effectively pushes me into menopause. Pre-diagnosis I had no menopausal symptoms. At 43, with no children, I was unlikely to have them. But the treatment will make that decision for me. The conversation propels me to the unknown future, confronting the reality that the cancer could come back. That’s what cancer does, generally, if not prevented. It means I will now live, for at least five years, with the niggling concern: Is that just another cyst or a more malignant lump? Is that ache in my hips from the hormone treatment or is it cancer? I’m a pretty pragmatic person so I doubt I’ll let these thoughts linger too long – but they will be there.

The metaphoric, legislative and actual impact of men like Trump and Putin being in power feels like a continuous assault on those with vulnerable bodies. I try to imagine what it would be like to be a Muslim-American citizen from one of the seven targeted countries. To wonder if I left the USA to visit family abroad, whether I’d be able to get back in. To know that even if I don’t travel I’ve effectively been told I’m not entirely welcome, that my body is suspicious. Or I imagine being a woman in Russia, married to a violent man. To already feel trapped and alone and then to learn that the Government has made a decision to protect my abuser rather than me – that those with power have so little interest in protecting me. Of course this happens in other countries as well, including Australia. I think of the ‘ban on sleeping rough’ recently enacted by Melbourne City Council, as if to be homeless is a crime. To be punished for terrible life circumstances and the lack of affordable, safe housing, rather than helped.

Breast cancer carries a lot of emotional weight. Breasts nurture life. They are the primary external signifier of ‘femaleness’. In my instance, because the cancer is connected to estrogen, the dialogue includes my ovaries, my capacity to reproduce – another loaded aspect of being female.

I’m aware of the precariousness of the pathetic fallacy when going through such an intense experience. Even writing about cancer is odd. It’s such a different experience for every person. By necessity my focus is on the vulnerability of my body in a way it never has been before. My diagnosis has coincided with a moment in history that feels like an assault on women, vulnerability, kindness, mercy, healing. It’s not the full story but it’s a dominant narrative I dwell on.

Is this a point of evolution for humanity? The death throes of a certain kind of patriarchal power? I wonder if we are capable as a species of turning our backs on the violence of battles and binaries and find new ways to be with each other and to treat the planet we live on.

Humans are capable of incredible ingenuity. I am the beneficiary of it with my diagnosis and treatment. How much is now known about breast cancer, the vastly improved survival rates. Fifty years ago I doubt my prospects would have been as good.

My chemo winds up late February. That night I catch a snippet of Michael Moore’s documentary, Where to Invade Next. The part I see is about Iceland. How after the catastrophic collapse of their economy they prosecuted the men responsible. How they introduced legislation that boards of every company must have at least forty per cent women and no more than sixty per cent of either gender. The women being interviewed are frank in their assessment of America. The reason things have gone so badly there is because the driving cultural priority is to look out for yourself and your family, not for others and society as a whole.

The next day I walk in the early evening as I’ve tried to do even when feeling most rotten. A woman I don’t know is out the front of her house. Our eyes meet and she gives me the most warm and genuine: “Hello!” A lingering side effect of chemo is that my eyes water a lot, and I am wearing one of my head scarves. So perhaps I look sad, or she pegs me as a chemo recipient. Or maybe she is simply a kind person. I’m surprised how much it means to me, that small moment of connection.

Later that week I catch up with a friend who asks if I celebrated when I finished chemo. It didn’t occur to me. I’m glad that phase is over but there is more to come. I will remain diligent, stay present, follow the treatment plan. Focus on what can be done each day and try not to get too overwhelmed by an uncertain future.

Emilie Collyer writes prose, poetry and plays. Her writing has appeared in Overland, Kill Your Darlings, Aurealis, among others. She has two collections of short fiction published with Clan Destine Press. Recent award-winning plays include Dream Home and The Good Girl which premiered in New York in 2016.