Sex and your relationships can be an important part of your life, and it’s normal for a stem cell transplant to affect them. Tara shares her story, and top tips for navigating sex and your relationships after transplant.
When did you have a stem cell transplant?
I had my stem cell transplant in November 2019, after three rounds of gruelling chemo for acute myeloid leukaemia (AML). Although my family (and friends!) were willing to be donors, no one was a match, and so Anthony Nolan stepped in to find a matching stranger who could save my life.
How did you feel after your transplant?
After the transplant, I often felt weak and nauseous. It was a victory if I was able to walk to a café nearby, to remind myself the outside world still existed. During the pandemic, this window of opportunity slammed shut and I was confined to pacing on a small balcony, watching near-empty trains travel past the bedroom window. Thank god for video calls!
Graft versus host disease (GvHD) showed up in widespread rashes, with red, itchy, flaky skin. I used creams and pills to treat it. Bras felt uncomfortable so I stopped wearing them when I had flare-ups and wore t-shirts and leggings, or soft, loose dresses. The transplant had left me bald and skin care was restricted to gentle products for sensitive skin.
Was your relationship affected by your transplant?
My partner, Sean, and I had been together for two years before my diagnosis with AML, and he has been a fantastic support throughout. He is a pragmatic person, with a good sense of humour, and would know how a cuddle or a giggle would make things better, or at least not so bad.
When my body started chemo-induced menopause, I was devastated, and I think a part of me will always remain sad about not being able to give Sean our own children. I spoke to a counsellor and know that I can sometimes be sensitive around other people’s children.
How did having a transplant affect your sex life?
It’s hard to feel attractive when you’re recovering from a transplant, especially when your skin doesn’t react well to make-up and you have no hair to style. Even perfumes reacted badly with my skin and made me feel ill.
For Valentine’s Day, Sean had organised a night away and a special romantic dinner. We were able to spend time alone and be intimate which wasn’t always easy. We went on holiday a few months later and couldn’t have sex as GvHD had made everything sting and sore. It’s wasn’t a pretty sight, and I’m thankful I have a partner whose attraction to me isn’t just skin deep. He had a high tolerance for things that might make others squeamish, and although I was often insecure and frustrated with my body, we knew it was important to be patient.
How did you manage changes to your sex life and relationship?
I’m lucky to be in a relationship where we laugh often, so my partner would often make a silly remark or joke to lighten the mood. Sometimes things were not at all funny, and if I said I was frightened about something in particular (biopsies never get easier), he would support me. Support doesn’t always have to be saying the exact right thing at the right time, that’s way too much pressure. Sometimes it’s the routine of phone calls to say good morning and wish you a good day, to ask how things like blood tests were going, a hug, a catch-up, an offer to get a cup of tea. Sean did many small acts without fuss that made a huge difference without putting pressure on me.
Do you feel able to talk about your needs with your partner?
These days I still have regular flare ups of GvHD as I taper off immuno-suppressant drugs and things can sometimes be awkward in the bedroom. It’s important to talk about it regularly when the time feels right.
How are you doing now?
Recovery is long and some days are much better than others. It helped me to leave the house each day and to keep a routine. Mini meditations helped, and sometimes I just needed a good cry. Catching up with a friend when I could cheered me, and I had plenty of lovely colourful artworks from nieces and nephews. The transplant team who looked after me were incredible, and I will always be grateful for all they have done, and still do.
Do you have any advice for someone who is experiencing difficulties or concerns about their relationship or sex life following their transplant?
My advice for those recovering from a stem cell transplant would be to be kind to yourself and your body. You’re going through an incredible ordeal. You are not alone – there is support. You will feel all of the feelings, and I found it better to try to let them come and go as they pleased, rather than to attempt to make sense of them. Tell your transplant team your concerns, even if they seem embarrassing. Tell those close to you what you’d prefer, and hopefully you will see how willing they are to adapt to a loved one in need.
*Names have been changed.