John was diagnosed with Ewing sarcoma at the age of 22. Decades after his surgery, he has rediscovered cycling. He shares his story and some tips for other former patients.
Can you tell us a bit about your treatment for bone cancer and how it has affected your mobility?
At the age of 22 I was diagnosed with Ewing sarcoma just above the knee in my right femur. As part of my treatment I had my knee and most of the femur replaced with a titanium prosthetic metal bone which has been replaced twice over the years. I also had radiotherapy treatment to the lower thigh area and both these treatments have severely restricted my mobility.
My right leg is approximately 7cm shorter and my knee only bends to about 80 degrees. I have compensated for this leg shortening with a small 1/2 heel raise on shoes with a heel and a 1 inch wedge raise within my shoe. This has worked remarkably well over the years but I have been unable to do any active exercise or sport and the limited knee flexion has been particularly restrictive.
How have you managed to stay active?
To be honest I haven’t been at all active other than walking to and from buildings from my car and very short walks. I have been fortunate that I have not piled on the pounds but as you get older the waistband does get a bit tighter. I have often wondered what I might be able to do to keep mobile, fitter and to find a new pastime.
I come from a family of big cyclists and have watched enviously as they have set off on their weekly cycling outings. I often saw cycling as a potential way to keep active and fitter but was resigned to being unable to do it. On a day trip to a local Derbyshire walking and cycle trail seeing so many leisure cyclists I was prompted to look again into potential options to get me on a bike again after 40+ years. It was something I had considered many years ago but never found a solution.
Have you got any advice for former patients who are keen to get cycling again?
I did a quick scan of some bike forums and quickly found someone with similar knee restrictions also seeking solutions to get back on a bike. The forum recommended an engineering company called Highpath Engineering that make a pedal crank modification called the Pulse Swing Crank. I contacted the company and explained my mobility issues and they assured me these could be overcome with their pedal modification so I borrowed a demo to try on my son's bike.
To my huge delight I found that this Swing Crank would allow me to pedal with a much reduced knee flexion on my right leg and from that point onwards there was no turning back. I decided to purchase one of the many excellent electric bikes and the Swing Crank which I fitted last week and then successfully completed my maiden bike ride on an off road cycle route.
I would definitely recommend an electric bike as it has pedal assist and will power you along when pedalling is tiring. I wouldn’t recommend going onto the roads as they are so dangerous and I have too much delicate implant work to risk being knocked off. However, there are so many excellent cycle path routes springing up all over the country giving plenty of flat routes to cycle in safety.
How has this new discovery affected you?
It's given me a new hobby and something to look forward to during the summer months. The beauty of cycling is that it's non weight bearing and can be relatively gentle so whereas I can only walk short distances I can cycle much further on an electric bike and hopefully keep fitter as well as being outdoors and seeing amazing countryside.
I'm now actively investigating the many local Derbyshire cycle routes and planning future rides which family members can accompany me on. Many cycle routes have cycle hire these days so they can easily join in if they don’t have bikes of their own. The slightly unflattering picture shows me just after I completed my first ride and I was extremely elated. I hope my experience can inspire others who may have similar restrictions and show that there are solutions out there if you look so don’t let your mobility issues stop you enjoying an active and outdoors lifestyle that all the family can enjoy.