From chronic GvHD to championship winner – Elaine's story of hope

A few years ago, if you’d told Elaine that she’d be winning sports championships she never would have believed you. After her stem cell transplant, she struggled with chronic skin GvHD and lost hope of ever getting back to ‘normality’. Then she started playing bowls. Along with ECP treatment, the regular gentle activity helped her GvHD slowly but steadily improve. In this blog she shares her journey and offers some words of hope to others. 

A second chance of life

Being diagnosed with leukaemia was a shock. It started a journey of almost 10 years – starting with chemotherapy, then my stem cell transplant in May 2013.  

They tested my brother and sister and my husband and our three children, but none of them were a good enough match. I needed to find a donor on the register. It was daunting, relying on someone to help you.

The first potential match decided not to go ahead, but fortunately after a while they found a lady in America who was a 10/10 match. It was such a relief. I wrote to her later to say thank you for giving me a second chance of life. Without her, I just wouldn’t have had a second chance at life, would I? 

Recovery was a long road, but I found something that helped

The transplant itself went smoothly, so then you’re just hoping it’s going to work. I didn’t really know what to expect. 

My consultant did say to me it would be at least a year after my transplant before I started to feel back to normal, but the specialist transplant nurse said that realistically it could be more like five years. That was daunting. It felt like such a long time. It’s different for everyone though. 

For me, I had several months of not being able to do much, falling asleep for hours every afternoon and chronic skin GvHD [Graft versus Host Disease]. I’d say I struggled with it for about five years. One of the effects was my wrists were very tight and uncomfortable. As well as ECP treatment, I started to have some physio. That helped, so I started to think that some gentle exercise might be good for me too.

My sister and my brother have played bowls for years, so me and my husband thought, ‘let’s give that a try’. Lots of people think bowling is a bit of an old person’s sport but far from it there’s a lot of younger people who play. It’s very active and a great way to meet new people and open your circle friends.  

I wasn’t sure if bowls would help or not, but I just gave it a go. I started playing in 2018 and I’ve gone from strength to strength, thanks to the encouragement of some other players, who have helped in every aspect of the game and have become very close friends.

My GvHD improved along with my bowls. I became the ladies club champion in 2021, and then in 2022 I won the ladies Bowls Bedfordshire County unbadged championship. It’s been a shock, a nice shock, but a shock. I’ve never won anything in my life and then after my transplant I didn’t think I’d ever be able to do anything like this. 

The people at my club know what I’ve been through. A lot of them have said, ‘I can’t believe you’ve been through everything you’ve been through and here you are winning trophies.’ I still have times when I feel down, there are good days and bad days, but things like this pick me up and make me want to carry on. 

Giving hope to others

Initially when you’re told you have cancer, it’s quite hard to see past it, to getting back to normality. When people say to you, ‘It will get better’, it’s hard to believe it ever will. There were times when I couldn’t see my GvHD ever getting better. But from my own experience I learned that you just have to hang on in there and eventually it does get better. It sounds so simple but it’s true.  

A while ago, Debbie [my Anthony Nolan CNS at St Barts] put me in touch with another lady who was having a difficult time. She felt like the GvHD was going on for ever and she couldn’t see the point in continuing with the treatment. I spoke to her and a few months later, Debbie said, ‘Thank you, because whatever you said seemed to give her hope.’ That was nice to hear.

My husband has been very supportive, he’s been with me through everything, and my children have always supported me, so I’m very lucky in that respect. But it would have been really nice to have someone to talk to, someone to guide me through the journey a bit more. 

For me the recovery has been a long road. I’m still not at the end of it, but I’m a lot better. I don’t think my GvHD will ever go completely, I’ll always have some scarring, but I can live with that. A stem cell transplant changes your life but thanks to my donor I’m here to live it. To anyone reading this who is struggling: just hang on in there. I got there eventually, and I hope that you will too.