In mid-June I was diagnosed with Ewing’s Sarcoma – a rare soft tissue cancer growing off my ninth rib. I first noticed a problem after my housemates and I decided to have a party to celebrate making it through our first term of uni. The morning afterwards, I felt an excruciating pain in my side. I took a couple of paracetamol and shrugged it off as a drunken bump from the night before, but when I noticed a prominent protrusion of a rib a few months later, I knew something was clearly not right. Within a few weeks, my life went from normal to a series of scans, tests and biopsies, leading to a swift diagnosis.
Of the hundreds of side effects of chemotherapy – intense fatigue, nausea, memory loss, sores, a strained immune system, waves of anxiety, weight fluctuations and the constant feeling of burnt fingertips – the stripping away of masculinity is one of the most surprising and it seems, for many men, one of the most difficult to deal with. As a fellow patient on my ward bellowed one day: “I’m not a fucking man any more.”
I’ve never considered myself especially macho. My ex-forces father upholds traditional masculinity with his adoration for Top Gear and pie, while my bedroom is spotted with candles and I have a perpetual desire for caramel lattes. Strong to him is muscle and the ability to keep his family as one unit. Strong to me, these days, has become making it out of bed, finishing a writing commission, or making it a day without pain relief.
A person’s sense of masculinity depends on all sorts of factors – age, background, sexuality – and as a young gay man, I feel I face a lot of expectations regarding how I look. I’ve been told that because I’m a man, losing my hair must be so much easier than it is for female patients. But loss of hair is an external change of identity. When I had my hair, it was worn up in a sort of improvised quiff, sticking to the trends as best I could. I enjoyed getting ready to go out, just like the next person, taking a vague interest in fashion and looking “good”. When my hair started falling out and I decided to shave it all off, my boyfriend took the clippers out of my shaking hand and helped finish the process for me.
Most of the suffering with cancer and chemo can be hidden behind closed doors and kept private. But losing the hair on your head, face and body immediately brands you as someone to be seen with sympathy, even pity at times. However you define your masculinity, this can be a problem.
Masculinity is often seen as synonymous with physical strength, which is hit hard when you start chemotherapy. In the two weeks after my first cycle of treatment, my weight dropped by 6kg to 54kg. I was never particularly muscular, but my arms and legs are almost stick-like now; my ribs show through my skin more than ever. In the wards I share with other men, this weight loss has led to many of them looking nearly androgynous. My university work and writing doesn’t require physical strength, but for the builders and labourers with cancer, the illness can be a wrench not just to their livelihood, but to their identity.
Accepting that you look like someone with cancer is a jolt – just as difficult as accepting that you are a person living with cancer. I have become someone I don’t recognise so readily when I catch myself in the mirror late at night, I feel like a lesser version of myself; incomplete. And the problem is that because “being a man” so often translates into not visibly caring about or acknowledging your emotions, my sense of masculinity feels fractured and fragile.
The loss of independence that comes with cancer – from the struggle not just to keep afloat financially but to pour a glass of water – is incredibly frustrating. I’m halfway through my degree and was pulling together a happy life in a big city away from home. Being grounded at my family home for the duration of treatment feels like the toughest tablet to swallow. Despite my family’s endless efforts to ensure I’m safe, comfortable and as happy as possible, not being able to be responsible for my own wellbeing or even able to take my medication on time without help has stripped away my sense of self control. My parents’ lives revolve around me now, which makes me feel both guilty and grateful.
My treatment will most likely leave me infertile, and as a gay 20-year-old, I hadn’t thought too much about my desire to have children just yet, so this news is a little unsettling. I’ve long understood that I’ll never procreate in a typical heterosexual relationship, but the sense of being “incomplete” because you’re unable to procreate in the usual way is something a lot of patients talk about. I spent some time discussing infertility with a Muslim patient who was on my ward and, to him, losing the ability to procreate has disrupted his expected family plans, and makes him feel he’s letting his parents down. Another patient I spoke to was concerned about what future girlfriends would say about his manhood.
Cancer has made me rethink what masculinity means to me and others, and I’ve had to adapt to suit this temporary identity. I am less independent, but more driven than ever. While cancer seems to change and compromise the identity of many men, what really needs to change is our understanding of what it means to be a “real man”.
