Cyclist grapples with PV

John has been a cyclist for over forty years. He hasn't let PV stop him.

John Taylor has been a competitive cyclist for over forty years. He began his cycling career at age fourteen when his cousin introduced him to the sport, and two years later he embarked upon a serious racing career.

John has cycled through-out the UK, France (as seen above) and Belgium, competing with top amateur cyclists. Today at age sixty he is lean and muscular and he continues to enjoy cycling in the Peak District. John is married and has three grown children, all of whom are enthusiastic about sports. His eldest son is a runner and steeple chase champion, his younger son a track and road racer, and his daughter a competitive swimmer.

Leg cramps

As a veteran cyclist, John understands how his body reacts to physical stresses, but several years ago something in his body seemed to change. John began to experience cramps in his legs during rides.“I’ve ridden at quite a high level for a long time. You get to know your body, to know what to expect. But these cramps were somehow different from anything I’d felt before.” John was competing in a race in France when during a long uphill segment he suddenly felt cramp in both legs and a heart attack, although doctors found nothing wrong with his heart.

Burning and itching in feet

John does not smoke and drinks very little, but one New Year’s Eve he had a few more drinks than usual. Within an hour he developed excruciating burning and itching sensations in his feet which lasted for several hours. He took an aspirin and found that the discomfort diminished. John’s wife Sandra encouraged him to talk to his GP to rule out any serious underlying problem. John’s GP ordered a blood test, which came back showing a high red cell count. John was referred to a haematologist and diagnosed soon after with polycythaemia vera (PV). Once he was diagnosed, the reasons for many of his mysterious pains became clear.

Connection with leukaemia “hit me hard”

“My consultant gave me the right advice and put me in a positive frame of mind,” says John. “He told me, ‘Don’t worry. It’s true that there’s no cure for PV – but we can keep it under control.” “The only time the diagnosis really hit me was when I went to venesection for the first time. My wife Sandie came with me, and the staff gave me a leaflet produced by Leukaemia Research. When you think about the connection with leukaemia and you see other patients getting chemotherapy, and then you realise you’ve got to take the drugs for the rest of your days…it’s sobering. “

John began treatment with one tablet of hydroxycarbamide daily and regular venesections. His blood counts came under control and he was able to continue his training regime.

Maintaining endurance

John has fought hard to retain his speed and endurance since his diagnosis. He sometimes feels frustrated when comparing his pace and level of fitness to that of his cycling friends. “I can ride on the flat and hold my own, but my muscles die just when I need to push hard. By the time I recover the other riders are half a mile down the road. It’s a bit limiting.” John explains that athletes with PV must be patient and stubborn. “You’ve got to stick at it. Sometimes I feel so tired that I want to collapse, and my wife says, ‘Go out for a ride. You’ll feel better.’ I go a few miles and I think I’m going to fall off the bike. But within a quarter of an hour, I start to feel more energy. After an hour I come back to the house and I feel re-energised.” (John and his wife Sandie shown below.)

At the time of his diagnosis John sometimes experienced extreme fatigue, but he has eliminated the problem with a precise training regime. He says, “Cycling is both an aerobic and an endurance sport so I’ve had to built up my fitness very carefully. It takes me longer to build fitness now that I have PV, but it’s possible.”

Tired at work

John was working as an engineer with Xerox at the time of his diagnosis, but he took early retirement with a reduced pension when he turned sixty. “I didn’t realise how tired I was getting at work until I finished. Now if I feel tired, I can rest. I made the decision to retire because I want to live well, doing the things I like,” he explains. John has decided to focus on riding with friends rather than racing. “In a race you have no choice. If the pace is high, the pace is high.”

Just grateful to be cycling

John has been able to reduce his treatment. He has not required venesection for two years, and working with his haematologist he has been able to halve the amount of medication he takes. He hopes to reduce the amount of medication he takes even further. He finds that exercise helps to reduce itching and fatigue. His blood counts are stable and within normal range and he believes staying fit is helping him fight PV. “Whatever happens, happens,” says John. “I’m just grateful to be out cycling,” he says.

See a video of John talking about his diagnosis and how he stays fit.

My consultant said don’t worry. There’s no cure for PV – but we can keep it under control.