How I found my way to… clocking up the miles everyday.

This is Robert’s story of how he manages to run, cycle or hike everyday while living with blood cancer and going through chemo, a brain haemorrhage, a kidney transplant, pneumonia and a fractured vertebra. As with all our blogs and stories, this story reflects personal experiences and insights from an individual affected by cancer. It is not recommended to serve as medical advice or recommendations. We encourage all readers to consult with their healthcare professionals before making any changes to their treatment or recovery plans.

The bottom line is that I think humans are meant to move. I always feel at ease when moving. I have never come back from a swim, hike, bike or run feeling worse than before I started (tired or sore maybe.) I have always used exercise to “let the witch out,” switch off or as an opportunity to think things through and process. I have always played sport and am a long-time fell runner.

Diagnosis

In 2013, I was diagnosed with a blood cancer called Waldenstrom’s Macroglobulinemia (easy for you to say!) when I turned 50. I was given a three year prognosis. It had already damaged my kidney function and my immune system and, significantly for a runner, given me very low levels of haemoglobin making any exercise feel like being at high altitude.

I have had three lots of chemo (the last being cut short by the pandemic.)

Since then, I have had pneumonia, cellulitis and lost a finger. My kidney function has declined since diagnosis but I was told I wouldn’t be a candidate for a transplant because of my cancer diagnosis. However then I met a consultant who also ran – we swapped stories and he persuaded his surgical team I would be a good bet.

I then had a brain haemorrhage (a word I always struggle to spell!) thus delaying transplant. My kidney function nose- dived to 8% before a transplant in summer 2023. Since then I have also had skin cancer and a mystery fractured vertebra – probably down to osteoporosis because of the chemo.

HOWEVER..

None of this has stopped me moving every day. So far I have completed 69100 miles and counting. This is around 500 miles per month and around 3 hours per day. I bike, hike and run.

I started logging my mileage because I wanted my own set of numbers to log my progress that I could understand and own.

I have a multiplicity of numerical markers to track my bloods, organ function, biochemical profiles and the like but I only have a superficial understanding of them.

What I do understand is what a 20 mile bike ride over a particular route feels like, or a 1500 metre swim. So it felt like I was taking back some control. My miles are numbers I understand.  

The miles tell a different story to the hospital test results – they tell the story of being out in the wind up a hill or hearing the dawn chorus on the towpath after an early start; of being out with friends in the wildest of places or strolling off for tea and toast at the local cafe in the morning sunshine.

The logging of miles has become a habit and given me a sense of purpose to help structure my day. Going from being an active member of society to a passive recipient of services is a very long fall and so it has given me a sense of order, purpose and control in what has been total chaos. There is also a sense of achievement in defying expectations.

The miles are also a written record that my diagnosis is not going to win twice. It may well be life shortening but it will not trap me in its headlights and make me freeze. It shows that I got on with things and did my best.

The other benefits of movement is when I am physically tired, I have no problem going to sleep and staying asleep. I’m knackered!  Being mentally exhausted through worrying is a different kind of tiredness so I find being able to sleep for me is the cornerstone of good health as it is giving your body the chance it needs to do all its work behind the scenes. Of course I have my moments but fortunately they are few and far between.

 

 

Life now 

Since the kidney transplant my haemoglobin is back to normal so I am now “back at sea level.” It’s wonderful. I have “run” the Trog, Hobble, Leeds Marathon, Ben Nevis and the 3 Peaks (dressed as a teabag) for charity and to raise awareness about the possibilities a transplant can offer.

I am now a parkrunner and have rediscovered the joy that I once knew as a fell runner. It is simple and friendly and without frills. You can just turn up and do your thing and enjoy the sense of community that it gives. It is there that I saw the 5k Your Way team and smiled to myself, pleased that other people have the same pleasure in movement that I know despite their own health challenges. It is heartwarming to think that Move Against Cancer is a charity dedicated to helping people keep moving in their own way and on their own terms.

I am keen to promote the idea that you are “living with” not “dying from” your diagnosis. The glass is half full if you are filling it everyday by doing the things that you enjoy. So if you enjoy movement or moving in whatever form it may take then just keep on keeping on.

I would say to anyone in my position that you should try to get moving and do whatever you can. It says something about you, about who you are and how you reacted when things got hard.

Your body is an amazing thing and a gift to be used. When you move it it honours that. Be proud of it and be proud of yourself.