19 Mar 2024

From difficulty walking to running the London Marathon

Gruelling leukaemia treatment left Stephen Hughes struggling to walk up his garden path. Now the first-time marathon runner is training for the 2024 London Marathon. Stephen is proudly using his run to raise money for Leukaemia UK, knowing it will be used to fund research which will help other blood cancer patients like him.  

Stephen’s return to fitness is nothing short of remarkable. His leukaemia journey started with severe back pain in November 2016. 

“I’m generally fit and healthy but the pain in my back was unlike any I’d experienced before,” said Stephen, now 47, who lives in Penrhyn Bay, Llandudno. “It would sometimes clear up for a few weeks then come back. After a day out celebrating Mother’s Day in March 2017 it became a lot worse and I was in agony. It wasn’t a muscle pain or a trapped nerve – I could only explain it to people as being deep inside my bones. I also lost my appetite and was unable to sleep. On one particular day it was so bad I couldn’t walk. I called the GP and they advised me to get someone to take me to the A&E department at Ysbyty Gwynedd hospital in Bangor, North Wales.” 

Stephen during treatment

Tests revealed traces of blood were found in Stephen’s urine, and over the next few weeks he had further tests to try and find out the cause. 

“On Monday 10th April, I went to see my GP again as he’d called me in.  He said that there was something wrong with my blood which may be unconnected to the back pain but he wanted to check it out anyway. He had noticed that every time I had a blood test over the last few weeks, all of my levels were dropping slightly. The following day he called me personally, which I found odd, to tell me he had managed to get me an appointment the following day with a specialist. He told me not to panic but that they were based at the North Wales Cancer Unit.  

“I can remember the day like it was yesterday – Wednesday 12th April 2017.  Ironically that day I had woken up with no back pain at all. I had convinced myself and anyone who would listen that I was fine and the changes in my blood count were simply a side effect of the strong painkillers I had been on for weeks due to the pain. I was so convinced that I would be in and out in no time I didn’t even say a proper goodbye to my two children. However, it became apparent very quickly that it was more serious than that.” 

After yet another blood test, Stephen was called in to see the consultant who revealed the devastating news to him that they suspected he had leukaemia. He was told he would need a bone marrow biopsy to confirm the diagnosis. 

“I assumed I would have to come back another day for that, but was told no, I would be going straight up to the ward now for the test to be done.  That’s when the panic set in and the seriousness of the situation hit me and my wife. The bone marrow was taken from the base of the spine, in the exact spot I had been suffering back pain.   

A short while afterwards Stephen, who was 40 at the time, was given the devastating news that he had acute promyelocytic leukaemia (APL). He was immediately put on the drug Tretinoin, and also asked if he would like to take part in a clinical trial for a new drug, to which he agreed. Stephen remained in hospital for six weeks enduring several rounds of chemotherapy and multiple blood transfusions.  

“I suffered with painful mouth ulcers and an abscess in my armpit and at the top of my leg,” remembers Stephen. “But I received fantastic care and treatment for which I will always be grateful. In addition to the obvious physical impact, mentally it was extremely difficult. The tiredness in particular was overwhelming. My wife Catherine was incredible throughout the whole period and so supportive. Our children Elan and Harri were 10 and 7 at the time, and of course they were worried but Catherine made sure their life continued as normally as possible. I am also fortunate to have a very supportive employer and a great team of people that I work with and their support also meant a great deal and allowed me to focus on my recovery.” 

Stephen ringing the bell at the end of treatment

On July 19th Stephen was told he was officially in remission. He continued treatment at home for two months, then had bone marrow biopsies every three months to check he was still clear of cancer cells. 

“I remember making promises to myself that if I came through this how my life would change – more active, more time with the kids, and more exercise. But I was frustrated that although I was in remission, I had no energy.  Walking to the end of the path next to my home would wipe me out for hours. It took me months to recover properly. I struggled when my wife returned to work and the kids went back to school after the summer break – life was returning to normal but I felt far from normal. I am now fit and healthy.”  

Slowly Stephen regained his energy and strength, and so it was time to make good on his promises to himself.  

“Until last year I had never run further than 5k and I’m still not entirely sure what on earth came over me when I put my name forward for the London Marathon 2024! It’s a monumental challenge for me but one that I am relishing. I am enjoying the training and have already complete half marathons and am following my training plan ahead of the big day in April. After my experience with leukaemia I am so proud to be running on behalf of Leukaemia UK. So far I have raised nearly £1,500.  

“It is now nearly seven years since my diagnosis. I still have regular blood tests to ensure everything is fine. I am fit and healthy but I do sometimes wonder – will it come back again and will I be so lucky next time?  My immune system is still very weak. Any bug or virus will take weeks to get over and I have found myself in A&E twice in the last few years with an infection that my body has been unable to fight.  I’m not sure if my immune system will ever fully recover, I suspect not. But I know how lucky I am.  If my GP hadn’t first spotted the changes in my blood the outcome could have been very different.”

Stephen at the Conwy Half Marathon

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