Recovering from cancer can be tough. There’s an expectation that once you’ve finished treatment, everything should be fine. But we know from our Survivorship work that things aren’t always so fine, not least when it comes to sex and relationships after cancer. And with Valentine’s Day just around the corner, the love hearts and red roses can be a far cry from the sexual issues that so many survivors face, but often do not talk about.
Last year, I had the privilege of being involved in the development of “Rekindle”, an online research study between Cancer Council NSW and University of Sydney. Rekindle is a private, personalised online resource that addresses sexual concerns for all adults affected by cancer, and yes, partners can participate as well. Over the week I heard first-hand and intimately the challenges of maintaining existing, and beginning new, relationships for cancer survivors. It was a humbling experience for myself (and I have been working in this field for some time) and for my colleagues; we listened to some of the most brave, honest descriptions from people who had experienced so much.
“Sarah” talked about being discharged from her treatment without any discussion around the side effects that her treatment would have on her sexuality. She was – and still is – so grateful for an understanding partner, but described the challenges of how their once active sex life had in a “flash of menopause” disappeared into immediate hot flashes, vaginal dryness and being damn right uncomfortable. Why didn’t anyone tell her that vaginal lubrication was needed all the time and not just when having sex? Feeling vulnerable after a bilateral mastectomy, enduring chemotherapy, hair loss, mouth ulcers and loss of taste compounded leaving Sarah feeling extremely low and wondering how on earth she would ever be intimate with her partner again. We are not just talking about sex here; we are talking about how one feels about themselves, self-esteem, body image and loss of confidence –some of the things that define your sexuality.
For “Susan” it was a case of her husband moving out of the marital bed, unable to deal with what had happened to his wife or look at her physically, as he couldn’t cope with the changes. I was not surprised to hear how her self-esteem plummeted. How could this be happening to her? The romance in her marriage had gone, but most importantly the romance with herself had gone. She couldn’t imagine ever learning to look at herself in the mirror, let alone having a relationship with someone. What would she tell someone she might date? “Oh and by the way I don’t have any breasts, and this bandage I have on my arm is a lymphedema sleeve and I can’t take it off; and no, I have never had hair like this before.” Why hadn’t anyone talked about how she might feel?
“Greg and Phil”, interviewed together, were open and honest about navigating their way through, and beyond, prostate cancer treatment. Being homosexual certainly presented some challenges in the health system, and Phil’s erectile dysfunction meant that they had to learn how to deal with very prescriptive ways of having a sexual relationship, using prescribed drugs to enhance erections. Certainly for them, having any sexually intimate experiences since the treatment meant discussion and planning; the “let’s set Saturday afternoons aside” really took the romance and spontaneity out of everything. Why was there so much practical information that they had to find out for themselves?
There are so many stories out there, and every experience is different. It’s time we talked about this openly to validate the real issues faced by cancer patients when they finish their treatment, and by their partners.
Communication is key – early on from the health professionals, to each other, and to the community. Sometimes communication around sexual issues after cancer just doesn’t occur at all, and we are aiming to help with that.
The Rekindle research study is open to adults 18 years old and older who live in Australia and who have finished their cancer treatment and/or their partner’s. If your sex life has changed after cancer then this study could provide: a better understanding of sex and sexuality as related to cancer, greater comfort in learning how to communicate, encouragement in talking and thinking about sex, the opportunity to learn practical exercises to enhance well-being, and access to hundreds of hours of videos of real people talking about their very real experiences. And yes, it’s the good, the bad and the not so fine experiences, because that’s what life is like.
Perhaps the Valentine’s Day romantic dinner for two could involve signing up for something to enhance your well-being and relationships now and in the future. You don’t have to deal with this alone.