After having a stem cell transplant, Barry took on our 'Run 2km a Day' challenge. In this blog he shares his experience.
In September 2021 I was diagnosed with Chronic Myelomonocytic Leukaemia (CMML) and told that only a stem cell transplant could save my life. Without one, my life expectancy was 20 months.
The disease transformed to Acute Myeloid Leukaemia (AML) in March 2022 and I was faced with very little time unless this aggressive form of the disease could be treated. I had started to feel very unwell and had the symptoms you would expect with having two forms of leukaemia. It meant a delay in receiving a stem cell transplant because I needed to be brought back to a better ‘condition’ before going through it.
The five hardest words I've ever had to hear
It was a terrible time for not only me but my family, and my daughter was only 8 years old at the time. As my future seemed very uncertain it was difficult to know what to say to her and I was physically deteriorating fast. One day she asked ‘Daddy, have you got cancer?’. These were the five hardest words I’ve ever had to hear. It was time for her to find out and thankfully at this stage things were moving in the right direction. She was brave and managed to cope and continue to work hard in school and get on with life as best possible.
My body’s response to the treatment for AML was not as fast as I would like, but then the moment came when we could proceed with the transplant. I was looked after by the superb haematology team and went through a month in isolation, intensive chemotherapy, and received stem cells from a 21-year-old male donor in the UK. For me, the stem cell transplant was a painless procedure. The whole process was surreal as I was fully alert, sat up, and filmed the whole thing on my phone!
Giving something back
If it wasn't for Anthony Nolan matching me with my donor, I would simply not be here. I wanted to give something back to Anthony Nolan for giving me a second chance at life, so when I saw the ‘run 2km per day in October’ challenge I thought I must take part.
I had developed some further serious health complications earlier this year which resulted in me being hospitalised for a long period of time and had become very weak, and even wheel-chair dependant for some time. It was going to be very difficult for me to run each day so I opted to walk 2 miles per day, as a minimum instead.
It was very surprising how much this helped my recovery, and I was often joined by my daughter, good friends, and my wife on different days. The encouragement from my friends on social media was overwhelming. I eventually exceeded my target by some way though found it quite tough after what I had been through in the last couple of years.
Celebrating with others
The highlights for me were the response from people, some of which I hadn’t spoken to in years, and the encouragement I received. I hadn’t planned on going ‘public’ about the fundraising and I admit I hadn’t fully appreciated how well the event was going to be publicised. I raised over £2,100 which I found quite humbling, yet I was thrilled to do it.
It was also ironic that my new cells' 1st birthday landed during the middle of the event. My wife and I marked the occasion by spending a few days celebrating my ‘second birthday’ in Portmeirion, North Wales, and covered some miles there including taking a trip to the summit of Y Wyddfa (Mt. Snowdon).
I posted some updates on social media with some photos and my ‘milage’ along the way and the mutual encouragement from others participating and the fabulous organisers really encouraged me to get it done. It gave a real family feeling and I am sure that each different person taking part had very different and personal reasons for taking part and I hope everyone got something out of it!