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Let’s talk about sex, baby!

When Sammy Witness found herself supporting her husband after his cancer diagnosis, she found that they lost intimacy, and this had a huge impact on their relationship and her own well-being. Sammy wants to open up the discussion about sex with more support from within the healthcare system to help couples and individuals navigate the difficult waters of living life with cancer

Sex and illness doesn’t need to be taboo

A RARE opportunity to talk about sex…

Let’s talk about sex. Specifically, let’s talk about how sex benefits you medically. So far, we know that being sexually active leads to a healthier immune system by generating more antibodies that protect you from basic infections. We know that it improves bladder control for women by strengthening your pelvic muscles. It aids in balancing your testosterone and oestrogen levels, lowers blood pressure, reduces stress, and the list goes on.

When my husband was diagnosed with stage IV pancreatic acinar cell carcinoma at the age of 25, the primary focus from every angle was to keep him alive. No one talked to us about sex, it wasn’t even a side effect topic. The typical stage IV pancreatic cancer patient lives for two years, at best. The first conversation about sex was with our second oncologist consultation, in which we learned that because my partner may have a mutated gene we should “probably not have children because they would likely carry that gene”. When our parents offered to help him freeze his sperm, my first thought was, “For what? They’ve pretty much told us that he’s dying and that our children would also die. That sounds like an expensive mistake.”

The second conversation that we had with a doctor about sex, was after I begged my partner to ask if there was anything we could do to get his libido back.

My primary love language is touch, and sex has been a huge part of my life. Without it I don’t even feel human. I’m disconnected, grumpy, I get headaches, and I start to feel unwanted and unloved. After more than three years of very sparse sexual encounters, I felt like I was dying too.

I also felt like a total jerk because he had gone through surgeries, chemotherapy, radiation, and nearly a year of steroids that were wreaking havoc on his moods, and here I was crying about how I felt like he didn’t want me any more. We were fighting, walking on eggshells with his steroid rage, and not connecting physically outside of me holding him while he cried himself to sleep at night.

I wasn’t alone either. Suddenly, I could fill a minibus with young cancer patients and their partners who were also lost on how to navigate their cancer-ridden sex lives, or lack thereof.

Palliative care focuses on keeping a patient comfortable. When a palliative care specialist would come in to speak to us, we would talk about comforting things like medical marijuana, grief counselling and assisted suicide.

There was never a whisper of sex, consent, relationship counselling or anything of the sort. Communicating about sex when your partner is fighting cancer is incredibly complex. For us, this culminated in a story that I think other chronic illness patients and caregivers might be able to relate to.

A few months into my partner’s first round of chemotherapy, we were lying in bed watching The Office and cuddling. I leaned over and kissed him and then held his face in my hands and kissed him again. He pushed me away, “Get off of me!” I was stunned. I sat up, caught my breath, and proceeded to step out of the room and into the bathroom. I got in the foetal position on the floor and cried for hours.

When I was a teenager, I was sexually assaulted. I recalled that tone and the look in his eyes. Had I just assaulted my own partner by trying to make out with him? Did I make him as uncomfortable as I had felt when it had happened to me? Why didn’t anyone tell me that we might be at a point where I needed to ask if making out was okay? Why didn’t I, of all people, know that I needed to make sure I had consent? Did he find me disgusting? Were we even dating or was I just someone that cared for him now? In that moment, I made a promise to never attempt to initiate sex or a kiss from him ever again—I couldn’t risk making him feel pressured.

Sammy pictured with her husband

Having had a moment to take a breath, reflect and heal a bit, I realise that this was the wrong response to this situation. We should have communicated and taken a moment to establish boundaries, signals, a protocol.

When you or someone you love has cancer (or from what I gather, a number of chronic illnesses), everyone will tell you about the side effects, the neuropathy, the hair loss, the loss of appetite and the feeling of isolation. The chances of someone having a conversation about the changes in your sex life or the communication skills you will need to exercise are slim. Maybe this will sound like a petty topic for those who are primarily focused on survival, but cancer, if not fatal, is chronic.

Furthermore, those suffering from other chronic illnesses are also living with a lack of guidance in the department of sexual relations. Here’s a not so fun fact from the Centers for Disease Control and Prevention (CDC): 6 out of 10 adults in America have a chronic disease and 4 in 10 have two or more! That’s a lot of adults trying to communicate that they are too fatigued to engage in the kind of intimacy that their partner might need to feel connected. That’s a lot of adults dealing with shame, disappointment, insecurities and the fear of losing their partners.

This year, I returned to school to study psychology with the intention of working towards my certification in sex therapy. I recognise that there is a lot of work to be done when it comes to helping chronic illness patients with sex and communication in their more intimate relationships.

Whether you’re experiencing chronic disease or facing a fatal prognosis, we’re all humans with human desires. I’m determined to write a book on how to work through these challenges and find a way to have a healthy sex life and partnership when you or your partner are chronically ill.

”There needs to be more attention on the topic of sex and chronic illness and a protocol for how to navigate these challenges with a partner. No one should have to feel pressured or rejected when they’re already battling fatigue and/or depression.”                                             

About Sammy

As a sex educator, Sammy teaches a course on “Redefining Intimacy with Cancer and/or Chronic Illness”. For details, please visit: Valiant Bridge Sexual Health

Editor’s note: This article was first published Issue 012, Summer 2019 – ​RARE Cancer.

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