After getting chatting at a meeting on a wintry day late last year, Emma Quintal, Macmillan Cancer Support’s Engagement Lead, and Sarah Davis, a member of the London Cancer Community, joined forces to set up a sex and cancer project. The London Cancer Community is a network of Londoners affected by cancer, who work alongside Macmillan’s London Engagement team to improve people’s cancer experience. Emma worked with Sarah to come up with solutions and make her voice heard louder. These are their stories.

Sarah’s story

In January 2017 I was diagnosed with Hodgkin’s Lymphoma. After many rounds of chemotherapy and a stem cell transplant I found myself living in a completely different body. Slowly trying to understand the new contours and scars. The damaged taste buds and dry skin. I had a bald head that most people assumed was a fashion choice as buzzcuts were quite popular back then. I am also an artist – so unique hair comes with the territory.

A lot of my artwork is about healing and recovery. It always has been. Even before my diagnosis. I like to tell stories through objects. Using colours, materials and symbols associated with healing to guide the onlooker through this process.

It is no secret that cancer and its subsequent treatments has a profound effect upon the body. Every gruelling side effect was mapped out in pamphlets and notebooks. Stacks of anti-sickness, anti-virals, anti-everything pills were handed out to sooth the worst.

Though, as treatment was followed by remission, I learnt that perhaps there were some secrets. Taboos still unbroken. Sex was now painful, and I didn’t know why. I had been warned not to get pregnant. Told about the loss of fertility. But any talk of sex for pleasure was left completely off the table.

I plucked up the courage to phone my specialist cancer nurse. As she picked up, I pre- warned her that I had an embarrassing side effect to discuss. After my words had spilled out, I was met with:

“Oh, I’ve never heard of that problem before.”

She suggested lube and that was that. I was angry and disappointed. I knew I couldn’t be alone in this. Luckily, I found Macmillan Cancer Support was there to listen and to help me make a change.

When Lourdes Colclough (London Engagement Manager) and Emma Quintal (Macmillan Engagement Lead) invited me to a meeting to be part of their London Cancer Community, I didn’t know what to expect. It was a freezing December day and only a few people had turned up.

I was paired with Emma for an exercise on active listening. We were chatting away when a mad idea popped into my head. I didn’t hesitate and just said – “We should develop a sex toy workshop for women affected by cancer!”  Something fun informative and most importantly, not clinical.

Over the course of 2019 myself, Lourdes and Emma met often in a local East End café and started planning. We found Sh!, an amazing female focussed sex shop in Hoxton to partner with. In October of that year we held a focus group at Sh! which bought together a group of women whose sex lives had been impacted by cancer. There were no topics left off the table! Vaginal dryness, lack of libido, issues with body confidence, vaginismus. There was so much energy in the room and so much laughter. Being able to discuss difficult and personal issues in a safe and fun space.

What really came across was that these conversations were not being had within medical spheres. And the women who had felt confident to ask about sexual issues really had to push for answers. The need for more fun was just so clear.  From the energy of the focus group and all the words and suggestions we gathered, our next step was to develop a fully-fledged workshop at Sh! for women facing issues with sex during and after cancer.

Our last face to face meeting was in early March. People were starting to wash their hands more and look a little concerned on the tube but all in all, things felt normal. Myself and Emma met with Renee Denyer, the amazing manager at the Sh! store. We discussed a plan for the workshop, potential dates – everything.

And then lockdown hit and the realisation that the workshop we’d co-developed with Sh! and multiple women affected by cancer couldn’t go ahead quite yet.

When I was first diagnosed with cancer I tried hard to keep up with normal life. Attending art school in between treatments and staying in my East London flat share.  Cancer knocked me sideways. Chemotherapy grew harder with every round. My mental health was declining, and I felt lost as both an artist and person.

As my treatment grew closer to finishing, I had a scan that showed disease progression. I was devastated. I needed more chemotherapy and a stem cell transplant.

After the initial shock, came quite a serene sense of acceptance. I began making art again. Rather than trying to make the work I did before, I embraced the limitations in front of me and became a lot more creative.

With Covid-19, I feel somewhat similar. The limitations are huge, but the scope for new and interesting ways of working is even bigger.  Which is why I, Emma and Sh! are working towards taking our sex and cancer workshops online.

Since lockdown began, Sh! has been running a series of online chats and workshops on multiple sexual health and pleasure topics. By doing an online session for women whose sex lives have been impacted by cancer we have the scope to reach many more people.

Not everyone is comfortable entering a sex shop, no matter how empowering or sex positive the shop is, it’s just not for everyone. The anonymity of the internet opens up many doors.

Emma’s story

Sex and relationships are taboo issues for Londoners living with cancer, and unfortunately shame and stigma can sometimes prevent people from seeking help.  Whilst researching this topic, and through conversations with Macmillan professionals and people living with cancer, I found substantial evidence around health professionals’ reluctance to have these conversations with patients, and similarly, people living with cancer not feeling that perhaps their GP or clinical nurse specialist is the right person to ask. 

While more people are being diagnosed with cancer and survivorship is increasing, sexual problems as a result of cancer treatment are becoming an increasingly important issue that we need to address.

I first met Sarah at a London Cancer Community event in December 2018. I was keen to understand Sarah’s cancer experience, particularly any gaps in support that she might have experienced and how we might work together to find solutions.  

After hearing her story, I knew that there was more we needed to be doing to support people whose sex lives have been affected by cancer or treatment. We bounced some ideas around and when Sarah suggested we collaborate with Sh!, a female-focussed sex shop, I didn’t need much persuading!

We recognised that the issues Sarah faced were probably an issue for many people living with cancer, and in the interest of developing a solution that meets the needs of the very people it’s designed for, we invited women living with cancer to a focus group at Sh! to identify the issues that are important to them and to help us co-design, and potentially co-deliver, future sex and cancer workshops.

The success of this project can be attributed to a model that the Macmillan Engagement Team developed that encourages co-production, community collaboration, empowerment and nurturing of ideas. I’m always seeking innovative and dynamic people living with cancer to collaborate with, people with ideas on how to address health and cancer care inequalities and I simply act as the vehicle to amplify their voice.

Sarah has been an absolute dream to work with. I think the combination of her lived experience, passion, and creativity, combined with my ability and keenness to harness and catalyse that creativity, has meant that this project has really gained traction.   Sarah and I presented the sex and cancer project at Macmillan’s Health Inequalities Conference, at City Hall last year. The event focussed on community-led solutions to health inequalities. I wanted to ensure that Sarah had a platform, to showcase our work and to highlight any gaps that exist for women in relation to sex and cancer.

As this is a pilot, our initial focus is on women living with cancer, but we hope to replicate and tailor the model to a wide range of audiences in the future; for men, couples and the LGBTQI+ community, working with representatives from these communities to help us co-design future workshops.

We are currently exploring opportunities to deliver these workshops virtually. COVID has forced us to think differently about how we deliver sex and cancer workshops in the future, but I think the end result will be a more accessible and inclusive package of support for people living with and affected by cancer.

Watch this space.

Follow Sarah on Instagram @sarahdavisartist and visit her website.

If you are interested in the upcoming Sex and Cancer online workshops or would like to support this project, please contact Emma Quintal at Macmillan Cancer Support – equintal@macmillan.org.uk