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Perseverance and Fatigue

ScottEverything begins with a thought

The world of leukaemia immersed me so totally that I knew to escape it after treatment the ‘new me’ would benefit from a new direction. 

The journey through cancer diagnosis and recovery is one that has changed my outlook on life totally. Only once you have stared into the abyss, considered your limited options, and decided to embrace the changes required to move forward, is it possible to reinvent yourself.  

I spent much time, following my return home after treatment, considering how that reinvention would actually look. I have since realised that the time of recovery post-treatment has been one of the best solutions to help create the self-reinvention I was looking for. 

That new direction was exercise and a positivity towards the remainder of life that I had left to use. Scott

Exercise for Fatigue

The practical day-to-day stuff needed to be addressed as a priority. The main issue holding back changes was fatigue post-treatment. 

Fatigue doesn’t evaporate quickly once you get up after a night’s sleep. It sticks around all day and is forever waiting to take you off to a dark void whenever it gets the opportunity. 

One particular day stands out. I had gone to a local deer park with my wife. We parked up and I went to get a ticket from a machine about three hundred yards away from the car. I made it back to the car and that was it. I had an overwhelming urge to go home to sleep. Which is exactly what I did. 

To me, that summed up how the fatigue could become pervasive and beyond anything I could control.

Fatigue has been the single hardest thing I’ve had to deal with on my journey, but I've faced it with all the strength I could drag from the inner core of my being. Only by becoming physically active did I find that was possible. 

I embraced a training plan for gym and cycling with a will to succeed that has and continues to surprise me. When you realise what you can do as part of a coherent strategy and see enough tangible results, you can push past the old limitations of your soul and face a brave new world. 

Perseverance

One of my favourite quotes resonates with me in those times. Lance Armstrong, cyclist and cancer survivor said, “Always give 100%, whatever your 100% looks like.”  

So my attitude is to still do what I had planned to do. If I’m set and ready to go for a ride or to the gym I make that happen - giving of my best when I start the exercise.

Over the last three and a bit years the fatigue has eased off. It’s not eased to the point where I could go back to the life I had before (nor would I want to anyway), but it’s certainly enough to be able to function in a meaningful way.

In the new reality I’m living in, fatigue is no longer consuming my thoughts or actions. I’m not saying it won’t ever return but if it did the new focus I have towards exercise and positivity are going to help me to combat it again. I’ve found that pushing through and doing more activity, not less, is the key. 

ScottBIOPIC TIMELINE 

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. 

And regarding the cycling -my next goal is June 2020 to ride Lands End to John O’ Groats

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