From chronic GvHD to championship winner.
A few years ago, if you’d told Elaine Blythe that she’d be winning sports championships, she never would have believed you. After being diagnosed with leukaemia and undergoing a stem cell transplant, she struggled with a chronic skin condition and lost hope of ever getting back to ‘normality’. Then she started playing bowls at Stotford Bowling Club in Bedfordshire. Along with extracorporeal photopheresis (ECP) treatment, the regular gentle activity helped her skin condition slowly, but steadily improve. In her blog the Anthony Nolan Trust have shared with us, Elaine talks about her journey and offers some words of hope to others.
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. But of course, 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.
GvHD stands for Graft versus Host Disease. To explain, the word ‘graft’ refers to your donor’s cells, and the ‘host’ is you.
When you have a stem cell transplant, your donor’s cells will form your new blood and immune system. Your immune system keeps your body safe from infections caused by bacteria, viruses and fungi that are not part of you. It also scans your body’s own cells and removes any that don’t appear to be ‘normal’, such as those turning into cancer cells.
There are still small differences between your new immune system and other cells in your body after you’ve had a stem cell transplant. As a result, your growing immune system may harm some of the cells in your own body because it sees them as ‘different’. This is called GvHD.
GvHD can affect different organs, such as the lungs, the gut, liver, etc. Skin GvHD simply means that the skin is the organ effected. In this case, skin is likely to become dry, red and itchy and it could affect multiple areas of your body. This can affect your appearance, ability to regulate your temperature and lead to infection if the skin is broken.
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 play bowls for years, so my husband and I 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.
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 really hope that you will too.
Henny Braund MBE, chief executive at Anthony Nolan, said: “Elaine’s journey since her stem cell transplant has had its ups and downs, but it’s wonderful to see how well she’s doing now. It’s remarkable to hear how the sport of bowls has been instrumental in her recovery. It’s fantastic that she’s found so much joy and success in her new hobby.”
For more information, visit the Anthony Nolan website.
Photograph Elaine (right) winning Bowls Bedfordshire ladies’ unbadged championship
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