Lifestyle

'Society doesn't expect us to have desires': The truth about sex and cancer

The words, ‘sex’, ‘pleasure’ and ‘cancer’ rarely go together.

Society’s reaction to both sick people and those who care for them is often to sanitise them, but that does little to reflect their lived experiences and needs.

‘People often look at cancer patients through a neutered lens,’ says Brian Lobel, co-founder of advocacy campaign Sex with Cancer. ‘We share this with a lot of people – disabled people experience it a lot.

‘Society doesn’t expect us to be strong, independent, empowered, sexual, or to have desires.’

As cancer survivors themselves, Brian and his friend Joon-Lynn Goh, the campaign’s other co-founder, know exactly what it’s like to stare down the business end of the disease.

As Joon-Lynn, 40, writes in an essay on their site: ‘Currently, cancer patients are caught between, on the one hand, medical professionals who lack training and confidence to discuss sexual function and pleasure and, on the other, global cancer charities and corporate sponsors who have promoted a sanitised version of the “survivor” as the fundraisable face of cancer.

‘Between the medicalisation and moralisation of wellbeing, we have a problem.’

This is where Sex with Cancer comes in.

Brian, 40, describes the project as ‘artwork that is covering up a public advocacy campaign, which is covered by a business.’ On the site, you’ll find a shop specially curated for those living with and beyond cancer, as well as answers on topics ranging from nerve damage to dating with a terminal diagnosis.

‘Joon-Lynn talks about it really beautifully online,’ Brian explains. ‘She frames the shop as a way we can lure people into a longer more intimate conversation.’

Said conversation centres largely on a resource the pair have amassed based on 250 questions from people living with and beyond cancer and their partners, which they’ve distilled into 25.

Each of these questions has been answered by at least two different professionals in the field – people like patient advocates, sex toy sellers, nurses, doctors and psychosexual therapists.

‘Some things have a £10 solution that you can throw at them,’ says Brian, who lives in London. ‘And some are about really radically changing the way you and your partner speak to each other.’

Originally from Albany, New York, Brian has been doing work in the cancer sector since 2003. He had the disease when he was just 20 years old in 2001, which means he’s recently hit the point where he’s lived longer since his diagnosis than before it.

‘I was diagnosed about a month after I publicly came out as queer,’ says Brian, who also works as a professor of theatre and performance at Rose Bruford College.

‘I’m not a religious person, but if you make a major life decision about your genitals and then a month later your genitals get cancer, it can feel cosmic.’

Joon-Lynn, who also lives in London, was diagnosed with breast cancer more recently, and it was her treatment journey that prompted the two to start having the conversations that eventually became the campaign.

‘Cancer came at the worst time for me,’ she explains. In 2017, she had moved to Malaysia to help take care of her father, who had just gone through a series of severe strokes.

Wanting to make sure her mother was healthy, she asked her mum if she’d be willing to do a full check-up just to be safe. She agreed on the condition that Joon-Lynn would do the same, for moral support.

‘The results were not what I expected,’ she recalls. ‘My mum was in tip-top health, and I had breast cancer.’

Joon-Lynn ended up moving back to the UK because of this news. She learned her cancer was stage two and over the subsequent year, she went through surgery, two rounds of IVF and radiotherapy.

‘During this time,’ she says, ‘I took on freelance work and didn’t tell anyone in a professional context I was going through treatment. I went into a very practical survivorship mode.

‘My friends said I was an inspiration to witness – how strong and determined I was to get through this. But really I just shut down a huge part of myself.’

Joon-Lynn reached out to her friend Brian and says the talks they had were ‘a great source of support’.

‘We just started discussing different things that weren’t being talked about in the world of cancer,’ Brian recalls.

‘We share similar political views and an interest in expanding out the conversation at all times. And we started thinking about why the cancer field is so bad at talking about sex.’

Thus, the two began to think about what a sexual resource specifically for people with cancer would look like.

‘Sex With Cancer means a huge deal to me,’ says Joon-Lynn, ‘because it was my only outlet that allowed me to feel “selfish” for thinking about pleasure, my body, and what it means to live a life even more fully than I did prior to getting cancer.’

‘Doctors are bad at talking about it,’ Brian says. ‘Nurses are bad at talking about it. Neither of those professions get training in it.

‘The charity sector is built off of inspiration and positive messaging, so you’re probably not going to talk about orgasms there.

‘People themselves are so stressed and so deifying of nurses and doctors and the people who care for them, that sometimes people will think, “ah is it ridiculous to ask about sex during this short consultation with these people who are saving my life?”‘

In addition to the shop and the FAQs, there’s also a zine and Conversation Champion badges, which can be worn by healthcare professionals to let others know that they’re more than open to sex-based questions.

But Brian also makes it clear that the point of the website is not simply making sure everyone gets an orgasm.

‘That’s not the journey,’ he explains. ‘It’s also going to be an impossibility for a number of people, and that might never come back.

‘We can have journeys which are profound that look very different to what we thought they would look like,’ he adds. ‘Our relationships, our sex, our intimacy – they can change, but they can also be incredibly beautiful.’

‘I want Sex With Cancer to be a place where our intersectional experiences of cancer, illness, race, class and other forms of marginalisation can be visible,’ says Joon-Lynn, ‘and where we explore what and how the question of pleasure can lead us towards meeting our real needs and our real selves.’

Sex with Cancer is a queer and POC-led organisation – something Brian says is ‘rare in the cancer world.’

‘We want to make sure that we’re not reaffirming some of those very dangerous things that keep sex from being talked about.

‘Normal families, nuclear families, simple relationships, simple fertilities – because all the rest of us fit outside those boxes in the weirdest and most wonderful of ways.’

He talks about a nurse he met years after his treatment who’d been trying to get a book on sex and cancer published for around two years, but the charity and hospital that she worked for wouldn’t do it.

The reason?

‘Because it had the word “anal” in it,’ says Brian. ‘And I remember thinking how have we come so far as a community with so many amazing medical and psychological breakthroughs, and we just leave this thing out?’

Now, that nurse is a part of the Sex with Cancer team.

When asked about the feedback they get from people they’ve helped with the site, Brian tells us: ‘Our conversation audiences are less about the product that worked perfectly and more about the sense that what we were doing enabled them to ask another question.

‘To be a little bit bolder with other people, and to think that they weren’t crazy or sex-starved maniacs for having those desires.’

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