“From the outset, the world of cancer care and support is deeply gendered”
BY NANCY KELLEY
Last September, an A&E doctor told me my scan showed what they thought was cancer and I started falling. Freefalling for days in a mind-reeling, heart-racing panic, only to land – splat – in cancer world.
Over the months that followed, cancer world is where I lived. If you’ve lived in cancer world, you will not need me to tell you how traumatic it is. If you haven’t lived there, I’m not sure I could ever explain it adequately, and I hope you never have to learn its ways.
Cancer world is, of course, bloody awful. This was not a surprise. But the fact that it was so weird, alienating and, at times, scary for me as a LGBTQIA+ person was a surprise. So this is a story about the what it’s like being a queer with cancer, and feeling like the system that is trying to reset you to a pre-cancer version of your body is also mashing the factory reset button on your sexuality and your gender, trying to put you back into the box you’ve fought your whole life to get out of.
From the outset, the world of cancer care and support is deeply gendered. For me, this arrived in the form of chemo hats – soft cotton hats you wear to keep your head warm and comfy when your hair falls out. I was on high dose chemo, and I knew I would be bald as a coot. In my urge to control something, anything, I became fixated on getting chemo hats sorted. So I sat for hours scrolling the internet, confronted with options that felt as gendered as newborn baby clothes. Pink/floral for girls, grey/camo for boys. By the time my wife came home three hours later, I was white faced and teary. “I can’t do it,” I said. “I need you to help me.”
For Lisa (she/they), an academic, diagnosed with breast cancer at the end of the pandemic, it came in the form of The Wig TM. “I didn’t want a wig – losing my hair was not the issue for me, but I was told ‘you may as well’… so I had an online zoom with the wig consultant. This was actually the week after I’d nearly died, so I wasn’t feeling great.” Lisa shared pre-chemo photos of their “super queer” short mullet and listened to the consultant speak about the how wigs can restore confidence and affirm who we are. Then six weeks later The Wig TM arrived. “My partner and I were literally crying with laughter – I mean, we just could not believe. I was remade in the image of Pamela Anderson!” The Wig TM is hysterical. “I will say, before you see it, she’s available for hire!” Lisa says, laughing. But it’s also awful, a canary yellow wiping away of the person that Lisa is.
For some LGBTQIA+ people, particularly trans+ cancer patients, this relentless gendering reaches beyond the surface and becomes a force that tries to dictate who we are and the kind of body we should want. Kit (they/them), a television producer, had been living with blood cancer for 10 years when they were diagnosed with breast cancer after a routine mammogram. For Kit, breast cancer felt like “a ridiculously gendered world – it’s like the difference between saying ‘that’s a woman’ and ‘that’s a lady’… I felt completely excluded.”
But Kit had also been on the waiting list for top surgery prior to their diagnosis and now hit a medical brick wall. Cancer surgeons would not give them the treatment they needed to feel comfortable in their body and gender affirming surgeons wouldn’t operate on people with cancer. “At the beginning I felt very guilty for even uttering the words “I want a double mastectomy – I want them both off”. And the doctor said, ‘We can just take half of one.’ And I didn’t want half of one gone. I wanted all of it and nobody would do it’.” Research, weeks of tense advocacy and the good fortune to have private health insurance meant Kit was finally able to find a surgeon who would perform the surgery. But they are left with complicated feelings: guilt that many non-binary and trans+ people in their situation would not have access to the same option, and guilt that for many women with breast cancer, the surgery Kit needed represents their greatest fear.
As LGBTQIA+ people we are used to creating the space we need to live in, pushing at the limits of a society that can still be deeply hostile. But when you are in cancer world you are at your most vulnerable, facing into your own mortality, sick, and often taking treatments that make you feel far sicker. Creating the space you need to survive as an LGBTQIA+ cancer patient can feel (and be) impossible.
Stewart (they/them), the founder and CEO of OUTpatients, was diagnosed with blood cancer in emergency care, and quickly found themselves simultaneously navigating a terrifying new world and exploring their identity. “There was an internal part of facing my mortality and really interrogating what it means to live authentically. I’d grown up with a lot of queer shame, so I was unpacking all of that, reflecting a lot on my dysphoria and how I was navigating it.” Being out to their clinical team didn’t feel straightforward at all – “Knowing that their understanding of LGBT stuff is probably not very good. And as your identity becomes more complex, knowing it’s actually going to confuse people more.” Over the years, Stewart has experienced everything from routine misgendering to queerphobic assumptions. “At one point I was in a sexual health clinic having a screening done. One of the doctors noticed I had my blood cancer and he asked me, ‘Oh, do you have it because you have HIV?’ and I don’t have HIV.”
For many of us, being out in cancer world feels just too risky, or too exhausting. We disengage from support services, we shut down interactions with our care providers. Lisa found herself going back into the closet in the chemo rooms. “I would describe it as a bit like going to a bad hairdresser and they don’t really know you. They start saying, ‘Oh, where are you going to go on holiday?’ ‘Have you got a husband?’ You know.” Being out felt just too vulnerable, particularly as pandemic operating rules meant Lisa was alone, their partner Isabel relegated to sitting on an old abandoned gurney the other side of the chemo room doors. Lisa’s story of separation carries painful echoes of the early days of HIV:
“After the first 12 rounds of chemo I thought, ‘I’m going to ring the bell.’ [The nurse] said, ‘Oh, do you want your son to come in?’ And I thought ‘son?!??’ I would have given birth at the age of eight for a start. I mean, I know chemo can age you, but… I’m sure she could see it in my eyes, but she said, ‘Son… or is it brother?’ So at that point, I had gone so much into the closet I didn’t say Isabel. I didn’t say ‘my partner’. I just said nothing, and Isabel was just allowed to sort of watch at the edge. But that really confirmed everything. She wasn’t even able to ask me ‘who is that person, that sits on the gurney and worries about you?’”
In cancer world, being invisible is painful and being visible is unsafe. My drop into cancer world was so fast that I found myself on an inpatient ward just a couple of weeks after the ER doctor triggered the trapdoor. I had no time to adjust my “out in all circumstances” attitude, no space to think about who I might need to be to survive the experience ahead of me. In hospital, you are surrounded by a rapidly changing group of strangers – care staff, medical staff, patients, other people’s visitors. My vulnerability came home to me one evening as I sat, listening to another patient’s friend complain about our mixed ward, about men coming in and out to visit. And I was suddenly terrified, sitting there in my brightly coloured “Trans Youth Are Loved” T-shirt, thinking, “What if that person sees my T-shirt? What if they are angry at me and want to start a fight about trans+ inclusion?” Tethered to the wall by my oxygen, as wobbly on my feet as a toddler, I couldn’t leave and knew I wouldn’t be able to cope with staying. And, like Kit and Stewart and Lisa, I felt guilty and ashamed.
It’s often said that cancer changes you, and this feels true to me. All of us feel passionately about making things better and easier for our queer cancer family. Kit speaks out about their experience with a range of cancer charities to raise awareness of trans+ people’s needs. “I do feel conflicted, and sometimes guilty as I feel so lucky, lucky to have had an early-stage diagnosis. But also, lucky to now look the way I do. But what now occupies my thoughts when sleep evades is, ‘What if there’s more people like me? Are we doing the best we can to enable them to live their happy ever after?’”
Lisa is running the LGBTQIA+ Cancer Stories project to create space for more storytelling by LGBTQIA+ people affected by cancer. I’m sitting here writing, in the hope that it will make some readers feel more seen, less alone. Incredibly, for Stewart, this drive to protect our queer cancer family meant building OUTpatients, the LGBTQIA+ cancer charity they needed but could never find. Stewart founded OUTpatients while they were sick and unable to work, living in temporary accommodation and working on their phone signal. Today it is a powerful force for good in cancer world, training professionals and running support services for LGBTQIA+ cancer patients. OUTpatients support groups were the only ones I felt comfortable attending.
OUTpatients, and Stewart, are very clear about what needs to change: “In the beginning, it was very much just ‘see us for who we are and include us’. That mode of activism – humanisation and visibility. And the more that I have worked in this space, and the more I’ve seen the wider socio-political discourse change, my view on visibility changed.” Stewart reflects, “With visibility comes vulnerability – we can’t expect people to make themselves visible if we can’t protect them when they are vulnerable. The conversation needs to move beyond awareness – “people know we’re here” – and into practical things that provide better care. Gender affirming care and cancer care, good information about sexuality and sex lives for queer people living with cancer. It’s not just the fluffy stuff. It’s medical safety, patient care and patient outcomes.”
Cancer drags up everything in its wake: our histories, our identities, our trauma. And then, for LGBTQIA+ cancer patients, cancer world – cancer culture – puts the boot in, making it clear that we do not fit, and if we want to be a “good” patient, we should get back into our neatly gendered boxes. It doesn’t have to be that way. A queerer cancer world is possible. Not only that. It is necessary.
To support Outpatients, and find out more about their strategy for change visit outpatients.org.uk. To take part in the LGBTQIA+ Cancer Stories Project visit outpatients.org.uk/2025/03/04/lgbtqia-cancer-matters
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