This article originally appeared on VICE Netherlands
When you have cancer, doctors mostly just want you to live. Everything else – including sex – seems irrelevant. But for many young people with cancer, sexuality remains important, although complicated.
So let's address some of the big questions: Does chemotherapy impact your sex drive? Do you upload pictures of your bald head to dating apps? Do you tell someone about your scars on a first date? And how do you go about accepting your body if and when it changes?
I asked four people with first-hand experience.
Iris, 30: "I uploaded a pic of my bald head to Tinder. Why pretend?"
I got sick in 2016. I had cancer in my lymph nodes and was treated with chemotherapy. Later, I also got thyroid cancer and needed surgery. While I was sick I lived on auto-pilot: I just went from appointment to appointment at the hospital. Getting through that time didn’t really feel like fighting – that kind of came after. After the chemo was over, I wanted to move on with my life. I thought I could go back to work like nothing happened, and start dating again. Why should that be so difficult?
I reinstalled Tinder on the last day of my chemotherapy and went on my first date ten days later. I uploaded a picture of my bald head on the app. Why pretend to have hair if I didn’t? Three months later I had my first real setback. I was dating a guy I really liked and wanted to sleep with him. But I had this feeling in my gut, questioning if I should really do it, or if it was too early.
I did it, but it was physically very painful – it was like I had suddenly developed vaginismus. I went to my doctors, but they couldn’t help me and promised me it wasn’t a side-effect of the chemo. I considered that maybe subconsciously I wasn’t ready and needed to take it slower. It’s something I felt in other areas of my life too: I wasn’t able to live at full speed just yet. My energy levels were inconsistent and I felt like I had to take care of myself and set stronger boundaries.
I recently talked to a doctor who told me that chemotherapy can actually have a drying effect on the vagina and lead to painful sex. It bothers me that we don’t hear about how treatment can possibly affect your sexuality. But I think intimacy and sex are ways to reconnect with yourself, whether it’s during or after your illness.
Kes, 37: "So many doctors had touched me that my genital area didn't feel sexy for a while"
Three years ago I was diagnosed with testicular cancer which had spread to my lymph nodes. I had two different kinds of chemotherapy and two surgeries – in the first they removed a testicle, in the second my lymph nodes.
After the first round of chemo I felt pretty optimistic. I wanted to get back to normal as quickly as possible. I partied a lot and dated several guys. That was a bit of a search because I can still orgasm, but not ejaculate. I had to get used to a different kind of sex, as did the men I have sex with. Fortunately, I’ve only had one fling who had a problem with it.
After the second round of chemo, though, I had a hard time. I felt really down and anxious, and I didn’t know what to do with myself. I went without sex for nine months and I didn’t feel like having it at all. My sex drive was very low. I was lucky to find a doctor who told me my testosterone level was low – probably caused by the chemo. After I started applying testosterone cream, things quickly improved. Most of the depressive feelings and anxieties disappeared and I started to feel lust again.
That didn’t mean everything was fine right away. So many doctors had touched my balls that the whole area didn’t feel very sexual at all for a while. The illness and everything surrounding it has definitely had an impact on my life – I was suddenly confronted with my own mortality and I didn't feel like I could trust my own body anymore.
Inge, 32: "It's more difficult with new guys"
Medically, I’m currently in the thick of it. I found out last spring that I have breast cancer. I’ve already had one surgery and I’m on hormone therapy right now. Before and after my surgery I purposefully didn’t date. I had to undergo radiation [treatment] and had permanent marker stripes all over my breast. It didn’t feel very sexy and I didn’t want my illness to be the main topic discussed on a date.
Although I’m still having treatment, I feel good. I missed sex too much to forget about it altogether, so I started dating again a few weeks ago. I have a regular hook-up buddy who has known about my illness from the start. I haven’t really noticed a difference when we’re together now – aside from him being more careful when he touches my breast area. We can talk about my disease, but we’re also very good at not addressing it, so we can just have fun.
It’s more difficult with new guys. I recently started to have sex with someone I didn’t inform beforehand, and when he saw the scar on my chest, his dick went limp right away and the mood was gone. It turned out OK, he gave me a nice massage and I ended up telling him about the whole process. But at the end of the day that’s not really what I’m looking for – I want to be able to enjoy sex without thinking about all the other things that are going on in my life.
Marvin, 32: "By listening to myself, my sex drive eventually picked back up"
When I was 27 I got diagnosed with testicular cancer. They operated on me very quickly and at first I didn’t need any further treatment. Later, I did, after they had found metastases [secondary growths].
I lived very much in my own bubble after the first surgery, I didn’t have a lot of energy and didn’t feel connected to the people around me. My GP referred me to an organisation for people who have dealt with cancer, and I went to group counselling and talked to people my own age about the things we’re all struggling with.
It wasn’t just about the fear of the cancer coming back; sexuality was a big topic for me. I felt disfigured after the surgery and thought a lot about the ideal image of masculinity I no longer fit into with only one testicle. Before I got sick, I was very active in the gay scene – lots of parties and sexual partners. I really enjoyed that. I tried to force myself to go back to that, but it wasn’t working. I didn’t feel good in my own skin – I had to discover and accept my body all over again. My sex drive was much lower and I struggled with that. It was like I had turned into a different person with different needs.
By really listening to myself and taking it easy in my dating life and during sex, my sex drive picked up and I started wanting to put myself out there again. I now have a partner who I’ve been with for a year. In the past, sex often didn’t mean anything to me and I just focused on the physical. Now it’s much more about having a good connection with the person I’m sleeping with.
This article originally appeared on VICE NL.