The side effects of a transplant can affect your sex life and relationships, whether you’re single or in a couple. Issues like GvHD of the genitals, fatigue, emotional problems and the general stress of a life-changing event can all have an impact. We want to make it easier for all patients and families to talk openly about these issues and get help if they need it.
Simon, 47, had a stem cell transplant in 2013 to treat Acute Lymphoblastic Leukaemia. He and his wife Jo spoke openly to Billie in Patient Services about how the treatment and transplant affected sex and their relationship.
How was the isolation period for Simon after his transplant?
Jo:
He wasn’t very good at the isolation period! He spent more time standing out in the car park talking to the trees than in the isolation area.
Simon:
I didn’t really stay in my room that much.
Jo:
They spent most of their time looking for him. A naughty patient!
Simon:
I wasn’t going to sit in my bed. At Sutton there’s a decent outside space, and even on the day of my transplant I was out there.
Your consultant must have been pulling their hair out!
Jo:
Yes, they were. As were the nurses. As was I!
Although I think that’s what got him through it. They rolled their eyes at it, but they understood that’s what he had to do.
Simon:
The treatment I received and the help from the staff…I couldn’t have asked for better, really.
How have you both found the overall recovery process?
Simon:
I’m still living with fatigue. It’s not something that I want everyone to know about but I am suffering with chronic pain too. The consultant thinks it might be GvHD, but we are still investigating.
If I didn’t have Jo I wouldn’t be here, put it that way.
Jo:
You know it’s going to be hard, because it’s cancer and you’ve seen the ads on the telly…but transplant recovery for lots of people is long, too.
Simon:
People expect you to be well, after a time, and you’re not.
Jo:
It’s one of the things that gets Simon down is that the lasting effects are invisible. I don’t blame family or friends. When something has been going on for years, it’s understandable that it’s not at the forefront of everyone’s mind.
'We’d been married for 5 years and been together for 8 years, so it had been a long time. I don’t think our relationship has ever been easy, really, although we are very close.'
We know that having a transplant can be challenging and that the consequences of treatment can have an effect on the quality of your home and sex life; relationships and roles can change. Can you tell me about your relationship before your diagnosis?
Jo:
We’d been married for 5 years and been together for 8 years, so it had been a long time. I don’t think our relationship has ever been easy, really, although we are very close. Even before Simon’s diagnosis with blood cancer he’s suffered with depression a long time.
A year before he was diagnosed, he was very depressed and didn’t really leave the house for a year.
One of the first times he did, he was diagnosed with leukaemia, so that was fun! I really think everything we’ve been through makes us stronger.
Simon:
How she puts up with me, I do not know! We have a close relationship, though, don’t we?
Always have.
Do you think your relationship had been affected by the diagnosis and treatment? If so, how?
Simon:
It’s definitely strained it, at times. I’m not the easiest person to live with.
Jo:
Understatement of the century!
Simon:
I think I am bit special in many forms, it’s true! (Laughing) My moods – especially with trying to fight the pain with different medications and steroids – have been up and down.
Jo:
I think the steroids were the hardest thing to manage as someone’s partner. He was bouncing off the walls at times and didn’t sleep properly for about 6 months.
Simon:
It’s harder for Jo, I think. I’ve always said it’s harder for the people looking in, trying to help but not going through it themselves.
'How she puts up with me, I do not know! We have a close relationship, though, don’t we? Always have.'
How do you think the transplant has affected you individually?
Jo:
It’s exhausting! I’m fortunate in that I am a nurse, and my way of dealing with things is to research and find out everything I can. We are the complete opposite in that way. Simon can sit there talking to a consultant for an hour and come out and say, ‘What did they say?!’
So I needed to know what all the medications were, wanted to know what was going to happen next all the time – that was how I coped.
I’ve found the whole thing incredibly frustrating, to be honest, because so much is out of your control. You don’t know what’s going to happen the next day; there’s so much waiting to see what happens, especially during the transplant.
Trying to cope with that, while Simon’s treatment was about 2 hours away from where we lived, plus keeping a job…it was tough.
Did you find that you were able to take some time for yourself?
Jo:
It’s funny. I think I had that conversation with my boss every other week: ‘What are you doing for yourself?’
My way of looking after myself was to throw myself, full-on, into what was happening.
I’m not the kind to take myself off for a pampering day. Simon would always try and make me go shopping with the girls or something. But it wasn’t of any interest to me at the time.
I was very fortunate that my work were incredibly understanding and supportive.
Simon, I know discussing sex & relationships isn’t always easy, but did anyone at the hospital discuss with you the effect that the treatment might have on your sex drive and fertility?
Simon:
They didn’t say much about the sex drive – not that I remember, anyway, but I was very poorly at the time.
They did explain the fertility. To be quite honest, I was more interested in getting through it alive than I was worrying about children at the time!
After a month of sitting in hospital, though, you have time to think about the bigger picture, and I’d made up my mind to give a sample. I’m 47 and Jo is 32 so it would be unfair of me to not consider it.
Jo:
It’s so difficult, isn’t it, though?
For us it had only been 3 days since he’d been diagnosed, and suddenly we were flung into this different world.
We’d moved in with my parents during that time to be nearer the hospital; it was all a whirlwind. So when someone brings up about storing sperm, you think, ‘That’s the last thing on our minds!’
Jo, did anyone discuss with you the changes that Simon might experience and how this might impact you, in your relationship?
Jo:
Briefly; they definitely made the attempt. But as I said, it was a crazy time. It is important that they do bring it up, though.
Simon:
Yeah, I’m glad they plant the seed in your head.
Jo:
Definitely. Everyone is different, but Simon was really poorly on diagnosis and the only option for us was to travel to Hammersmith, across London, to give a sample.
The thought of even producing one at the time was so far from his head – let alone having to travel half way across London to do it. What would have been better was if it could have been done locally.
We had to wait until he’d had his first month of chemo and was feeling a bit better and able to travel. So we were getting our heads round trying to have a baby in the future. At the same time, we knew the sample he gave was already impaired; so we were worrying, by how much?
Simon:
It wasn’t a great situation! If they could have let me do it in the hospital where I was already having bloods, treatment, etc, it would have massively helped.
Jo:
You can spunk in a pot anywhere, let’s be honest! (Laughing) And they can send the sample on to wherever it needs to go. It was a lot to put us through at an already difficult time
Simon:
We look back it now and it’s just part of the journey, I guess.
Do you think your feelings towards sex have changed since the transplant? If so, how?
Simon:
I’m not really interested in it. I think the only time I am is when I’ve had a few beers, but I tend not to drink much any more. It just hurts, anyway, so it’s not really possible. I’m just so sensitive.
When people touch me, I’m not prepared for affection.
And how has it been for you, Jo?
Jo:
I think it’s probably better for me now. But for a very long time…oh, God, I’m going to cry now.
I know it’s really difficult to talk about.
Jo:
No, it’s OK, it’s important to talk about, just give me a sec…it was really, really hard.
Because we were trying for a baby before Simon got diagnosed, and in an instant cancer took that away from us.
I think I started to associate sex with having a baby, and nothing else. So whenever we did try to have sex, that was all I could think about.
I got so obsessed with it that I didn’t want to do it, because I knew it wouldn’t result in me getting pregnant.
Also, I didn’t want to hurt him. Even now if I roll over and give him a cuddle in the night, it’s so easy for me to hurt him.
It’s very difficult knowing every time you try and show affection to someone you love, you hurt them.
Is there anyone you talk to about these feelings?
Jo:
It’s not really an easy thing to talk about. It’s such a personal thing! I don’t really talk to anyone about it in any kind of detail. Because I don’t want them to judge us, or him, about that.
You guys have received fertility treatment, which is often the case for patients after transplant. Can you talk me through what is involved and what kind of experience you have had?
Jo:
It’s been a nightmare!
When Simon was feeling a bit better after the transplant, we contacted Hammersmith saying that we’d like to use what we deposited.
But what they hadn’t told us, all those months before when we visited, was that we might not be eligible for IVF through the NHS, and it turned out we weren’t.
It was a real blow. We aren’t the sort of people who have six grand lying around.
So we tried to move on from that, as the cost meant it wasn’t an option. So we looked at adoption, which took a long time for me to get my head around, as I really wanted my own baby.
But we came to a decision and started to apply for it.
It works in different stages. So we got through Stage One, and then went on to Stage Two where we were sent on a two-day course.
Then after we’d been on the course and really thrown ourselves into it, we then got a letter saying that we weren’t being accepted due to the medical.
So not only were we being rejected but it was the leukaemia again that rose its ugly head.
Simon:
I’ve suffered with depression all my life, and both these times when this happened to us, Jo suffered with depression too. To see the person you love, knowing that you’ve always suffered from it, go through it…it’s not easy.
What I find hardest of all is that if Jo was without me, as a single person she could adopt. No problem.
Jo:
I think it would be OK if they told you right from the beginning, ‘If you’ve had cancer you aren’t going to be able to adopt a child.’ But that isn’t what happened.
I thought that was the end of the road, really. No more options.
So when did things have a turning point for you?
Jo:
It was kind of by chance.
A girl at work had got pregnant through IVF, and asked me if I had children, and I thought, ‘Oh, God, don’t ask me that.’
She told me it wasn’t as expensive as you think, but her husband is a doctor so I was skeptical! She then mentioned that there were more options than I might have first thought.
So I did do some more research, and came across the option of egg sharing. I eventually found a clinic that offered this option.
Basically if I was fertile enough, I would donate half of my eggs from the IVF cycle to pay for the treatment.
And the rest is history, I suppose! As I’m now 28 weeks pregnant.
'You know it’s going to be hard, because it’s cancer and you’ve seen the ads on the telly…but transplant recovery for lots of people is long, too.'
After all that you guys have been through – how does it feel to have a baby on the way?
Simon:
There’s a light at the end of the tunnel now.
Jo:
Yeah, it’s just the best thing in the world.
Is there anything that you’d like to say to other people going through similar things?
Simon:
Don’t give up. As much as having cancer and a transplant can put strain on a relationship, trying to think of the other person’s perspective can help.
Jo:
When people offer you help, it’s because they mean it! Try to listen.
I think the thing that was hardest for me was accepting help from others. I would have stayed indefinitely at the hospital and starved to death if it wasn’t for my parents feeding me and looking out for me.
Draw on the help and support from others if you can.
For more information and guidance around sex and relationships after transplant you can download or order copies of our new guide.