Doing cancer, queerly

Inclusive, compassionate cancer care for all humans

Sarah and I fell in love seven years ago. We don’t appear to have the itch. Before our togetherness, if I had to identify my sexuality, I would have said heterosexual. Ish. I remember saying to a friend, ‘I love women. I just don’t want to get fruity with them’.

It turns out, I just hadn’t met the right woman.

Three years into our relationship, we were thrown headlong into the cancer crater. Blessedly, we have encountered minimal prejudice or disrespect from the medical professionals caring for me. Maybe living in a city helps? And I have lived 50 years of my life as a straight, white woman with the privileges that brings. I navigate the system with that experience internalised. Now and again, a new doctor will look up from their notes and ask Sarah, ‘are you a friend or member of the family?’ One of us cheerfully, proudly announces, ‘we’re partners.’ Curiously, I noticed on a hospital letter recently the words ‘friend and partner’ to describe Sarah. How odd. Would someone write that about a heterosexual partnership?

People are often happy to see our jolly connection, our positivity within the hospital waiting rooms of cancer life. Sometimes we are greeted with ‘good morning girls!’ (I am 57. Sarah is 39).

Of course, like all people from this beautiful community we have experienced hostility in our life together.

2018: one year into our relationship, a man on a bike shouts loudly, aggressively at us, ‘effing lesbians’. I burst into tears, my heart races. This is the first time I have been yelled at, hated on, for walking along the street holding hands on a sunny day. I feel invaded, shocked, victimised. I feel a terrible sense of shame at being yelled at publicly. For some in our community, the seed of shame is sown early and grows into an unmanageable tangle of complex feelings. Many people I know and love and many I don’t, have experienced so very much worse because of their sexual preference or gender identity. Or the colour of their skin. I feel tumbled by this relatively mild disruption. What business does he have with us? He knows nothing about us. We have done nothing wrong.

The LGBTQI+ community experience verbal and physical aggressions, judgements, prejudices with alarming regularity. It is exhausting, brutal. Many of us are on our guard, are selective about revealing our identity or choose not to come out. We dial up or down a state of vigilance depending on where we find ourselves. I am more, or less affectionate; more, or less… gay.

We bring these experiences, this marginalisation with us when engaging with the medical profession. For many, there is weariness, fear, mistrust as a result of homophobia and shame. Some may want to share their LGBTQI+ identity but are worried about the reception so keep it in their pocket. Cancer is gruelling enough without this additional anxiety.

Recently, Sarah and I went to a conference by a remarkable, small charity: OUTpatients. Surely, the best name ever. They campaign powerfully for equity of care for LGBTQI+ cancer patients. I am clearly no expert in the concerns of the community but I want to learn, contribute and advocate. To unpick the layers of our rainbow cake. To learn from individuals and listen to their stories. To consider all that colours our lives, our cancer care. To understand at what points in the cancer game of Snakes and Ladders, changes in language, behaviour, process or policy could create a more inclusive, more compassionate experience.

A lung cancer nurse specialist recently sent me this from a patient; ’I held my hand out to shake and the nurse didn't look at myself or my wife after I introduced who she was and gave no eye contact throughout the meeting. We felt we wanted to leave’. Another young, gay patient was estranged from his family due to their refusal to accept his sexuality. He faced cancer treatment alone. If ever there was a time for compassion and kindness.

Consider; a gay woman in her sixties has felt unwelcome, unseen at the GP since she was a confused teenager. She has rarely seen her life reflected in the books she reads, on adverts or in hospital dramas on the television. Despite finding a lump in her breast, she is reluctant to attend breast screening.

Consider; a 59-year-old man remembers the terror fed to the community in the early nineties around HIV and AIDS. He has not yet had a Well Man or prostate check.

Consider; a young non-binary person feels extreme fatigue and has a family history of early cancer. The GP recently was uncomfortable and unclear as to where to sign-post them when they asked for mental health support so they are reluctant to return.

Consider; a transgender man socially transitions. He is living as a man, is registered with the GP as a man. He has not surgically transitioned and is not planning to. He is not offered breast or cervical screening.

It feels personal because it is personal. And we need a considerate, inclusive response to give people the best chance of living full, glorious lives with cancer. When cancer knocks on anyone’s door, its cold, brutal wind buries into our bones. It is unbearable to contemplate that one’s sexuality or gender identity might make this wind even icier.

In 2020 on diagnosis and being onboarded into cancer life, I was asked if I had someone to care for me at home. I guessed that was my cue to talk about Sarah. Which I did. I am not sure if this was recorded in the NHS database. I suspect not as we have so often had to re-explain our relationship. We are used to coming out. It is not a once done and dusted affair. Databases of the people the NHS serve help create inclusive procedures and policies, help make sure access is fair, help ensure nobody falls through the cancer net.

Who we are affects how we are and how we like to be treated. The language around the LGBTQI+ community can be a confusing, morphing lexicon, including for me. We are fearful of getting it wrong, of misgendering a person, of not knowing what non-binary means. Wouldn’t it be powerful if those who cared for us had training in: awareness of the current language of LGBTQI+ people; the difference between sexuality and gender identity; how to ask questions and listen; of the sensitivities and issues that some patients may face.

Alongside the cancer booklet that is handed to us like a holiday brochure to The End of the World and the tour of the chemotherapy ward (yippee) could we have the names of the charities and organisations that support our community in this our darkest night? And a true dialogue, not just information sharing. We are overwhelmed with information as new cancer recruits. How much safer we feel when asked not just how we are but who we are. A simple question perhaps: ‘Is there anything else you wish to tell me that might help us care for you better?’

As a woman in a same-sex relationship, I feel the power of the rainbow badge, lanyard and poster. I feel allyship and pride when I see these bright signals. I want to stand up and cheer. To me it says, ‘You are welcome here. You don’t have to come out, you don’t need to disclose but know I see you if you choose to be seen. Know I don’t judge. Know I care’. It opens up a respectful space. It's a potent, beautiful symbol of recognition and acceptance. Important, but not sufficient in the quest for inclusion and equity.

I have the privilege of curating a list of picture books online to help all children see their lived experience reflected in the books that are read to them. And for all children to have a window into the lives of others through books. In the same vein, all cancer patients need to see themselves reflected in cancer literature, in hospital documentation, on cancer charity websites.

We find our voices when someone listens. We feel seen when we see ourselves reflected back.

Cancer. A time when the deeply personal, our precious families, chosen families, friends, colleagues count towards what is happening right now. A time when our selfhood bashes up hard against systems like the NHS. We can’t leave our lives outside the building. It is who we are. Our childhood, life experiences, what our bodies have lived through are in the cancer room with us. The trauma of cancer is undeniable. The detachment, the dissociation cancer patients feel is real and terrifying. If we keep connected to who we are, if we bring our full selves, our crew, our tribe, our culture with us, if we are seen and heard, we are safer. We engage rather than withdraw. We are less isolated, more held together.

As Kae Tempest writes in their excellent book, On Connection; ‘Connection is the first step towards any act of acknowledgement, accountability or responsibility’. Ask, listen, see, be heard. Feel, share. See the human, the universal and be moved to care. We still have enough humanity to include this in cancer life. Compassion for the patients and loved ones; for the hospital staff caring for us too.

Gay, straight, lesbian, transgender, non-binary, bisexual, intersex, queer, no label or all the labels. It is remarkable to be human. Be curious, stay connected, be kind.

With or without cancer.

OUTpatients: The UK’s only LGBTQI+ cancer charity led by LGBTQI+ people affected by cancer

Macmillan Cancer Support: For all cancers and all people. Includes information and guidance for people from the LGBTQI+ community with cancer