After a diagnosis of follicular lymphoma in January 2012 and two rounds of treatment, including an autologous stem cell transplant, Trevor (pictured right) used running to help him recover. In 2015 his lymphoma returned, so he was given a donor (allogeneic) stem cell transplant. From this point, he set himself the goal of entering the British Transplant Games in Birmingham which have just taken place. Trevor won silver in the 5k and bronze in the 1500 metres. Here’s Trevor’s story:
‘I was diagnosed with follicular lymphoma in January 2012 when I was 42. I went through six rounds of R-CHOP chemotherapy until June 2012 when it went into remission. I always enjoyed jogging and I kept running throughout the treatment whenever I felt up to it (and sometimes when I didn’t!). During the second half of 2012 and most of 2013 I started running half marathons and triathlons. My thinking at the time was I had a health scare, the treatment was successful, and I wanted to do as much of what I enjoyed as I could – family and sports.
I ran my half marathon personal best in September 2013 but unfortunately relapsed in October, when I suddenly noticed that I couldn’t run as fast as the previous month. I then went back for more treatment – Bendamustine/Rituximab until February 2014 and in May 2014 I had an autologous stem cell transplant. Whilst that was a grueling treatment, it didn’t slow me down for long, and by July I was jogging again. By November 2014, I was running 22-minute 5Ks and also founded the Risborough Run in the Park 5k run (which is still going strong today with almost 800 registered runners).
In April 2015, I noticed that my running times were slowing down again. I also started to feel constantly very tired and began to get frequent migraines. I had relapsed again – this time it was bad. My spleen had enlarged significantly, taking up a large part of my abdomen and the frequent migraines were debilitating. I agreed with the doctors that I needed an allogeneic (donor) stem cell transplant, but first we needed to get the disease into remission again.
I went back onto my old reliable treatment – Bendamustine/Rituximab and we had achieved good enough remission by December to go ahead with the transplant. I look back at that time and feel so lucky, because out of the millions of people signed up to be bone marrow donors worldwide, I just had two perfect matches. I had the transplant in February 2016 and I started running again in April – I had to get out of the house! I also found out at the time that there were British, European and World Transplant Games – open to everyone who had a transplant which required immune-suppressant drugs. I decided during the transplant that I wanted to be part of those.
I recovered well from the transplant, regained my energy and started taking part in racing events again. I set my sights on this year’s British Transplant Games in Birmingham at the beginning of August and I decided to go for the 5k and 1500 metre running events. The games themselves were a wonderful experience for myself and my family. It was great to get together with transplant recipients, donors, relatives and supporters (over two thousand people in total) and it was an unbelievable celebration of how organ donation and transplants can save lives.
I went to the games with trepidation, as I didn’t know how well I would do – but I knew I was fit enough to participate in my chosen events, and that was good enough for me. As it turned out, I won a silver in the 5k and bronze in the 1500 metres. Both times I lined up at the start line, I thought about my donor (a young German man, with whom I have just made contact) and how he saved my life – if it weren’t for him I wouldn’t have been there.
I feel really fortunate to have ended up healthy again after all I went through. The information, local support group and forum provided by Lymphoma Action were a brilliant help. I cannot thank the NHS enough for treating me, my donor for saving my life and my family for their care and support. I have come through this with new friends and a wonderful perspective on life. The disease and treatment was tough but, so far, I’ve been tougher.’