The Power is within you
So ,what gives you the right to have a positive approach to life through exercise given the situation you have found yourself in ?
I have asked myself that question many times during my highly invasive treatments over the last three years .
The answer I have come up with most is , because you must .. What is the point of waiting for either the disease or medication or a combination of both to overwhelm you?
Early on I realised I could do very little to contribute to my survival from a medical perspective, all that stuff was being done to and for me. What I could do was drag myself out of the bed and write the best damn life story I could.
The potent force that’s in you , in me , in every new born baby on the planet , namely The will to survive had kicked in.
My exercise of choice was cycling , full on road riding , middle aged man in Lycra (MAMIL) stuff .
I discovered it after a hiatus of thirty years ironically in my hospital bed via a book my wife gave me to read.
“Its not about the bike” by the controversial figure that is Lance Armstrong . It charts his rise through professional cycling but also his battle against two aggressive forms of cancer and back to life again via winning the worlds hardest sporting event a record seven times.
Christmas 2016 saw my request for a bike as my main present, for the first time since being a kid, met with laughter and family derision.
It sat unused in the garage over the next month , bad weather and lack of confidence to get on it ,meant it was end of January before I chanced a short ride round our local block, a distance of half a mile.
I knew instantly I had made a connection with the metal , rubber and hard saddle that forms the structure of the machine.
That Saturday afternoon I rode that block five times with lots of breaks to recover in between.
Over the next few months, rides became training , training got logged in a training diary , goals got set , achieved and reset .. The summer of 2017 was ridden with an enthusiastic desire to improve in every way.
2018 arrived as predicted, however my health wasn’t as good as it had been, a family holiday in the new year saw me unable to get involved as much as I would have liked.. the news I had been dreading, was given in the medical mattter of fact way in February, I had relapsed.
The treatment however this time was going to be given to a much leaner much more motivated and enthusiastic patient.
I was now a cyclist with a life threatening condition, I knew techniques to inspire the rocky journey , I knew how to use my hospital environment to stay active .. In my room the consultant arranged for a static bike to be put in with me !
I did thirty miles a day on that thing , three blocks of ten miles at a time , in my eighth floor room, overlooking central London.
On release in September 2018 I was back on the road on a cold , wet Saturday morning, but never felt more alive.. The rain was driving in , I was struggling to stay upright but loving the first day of the rest of my life!
I have now been in remission for exactly one year .. how long that will last is up for debate .. life offers no certainty, but what I do know is that cycling continues to offer that gateway to the positive life I am leading. I recently completed my first Century ride , a hundred miles on my bike in just over nine hours, it was done at an organised event known as The Great Nottinghamshire bike ride , with an estimated four thousand other like minded souls .. The journey was all the sweeter given what had gone before , to be able to sustain the miles was a testament to perciverance of the human condition, the will to survive at its most acute .
March 24th 2016 Diagnosed with Acute lymphoblastic leukaemia (ALL)
Treatment : chemotherapy , radiotherapy and August 2016 a bone marrow transplant.
In remission until a relapse in February 2018.
Invited to take part in CAR T-Cell trial at UCLH .. given cells on 31st July 2018.
Treatment : The trick was to keep me alive from February until the cells were ready at end of July.. this was done with the usual brutal regime of sustained Chemotherapy on a daily basis over the months.
In remission since end July 2018 , still getting regular treatment of antibodies, injections and tablets to keep me well at my local haematology department in Nottingham.. still visiting UCLH for regular biopsy tests . The journey thankfully continues...
As only the 9th UK patient to do the CAR T-Cell trial I was involved in the publicity for the recent BBC2 documentary: War in the blood which followed the trial I was on.. well worth a watch , very powerful television.
I didn’t appear in the film but did other media , newspaper interviews and radio appearances.
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