The long walk to freedom

What can you expect from your individual recovery in the first few months following your bone marrow transplant? 

My own journey on that particular road began in August 2016.. 

I remember the summer weeks of 2016 very well , I had been in the process of treatment since March. By the end of May I had been informed that I would be having a bone marrow transplant at the start of August. I was so lucky that an unknown donor was shortly to give his cells to facilitate it. 

The European football championship was in full swing , host nation France were playing well , as usual in major tournaments, I’d had a tenner on them to win the whole thing. I followed the action from my bed watching the screen high up on the wall in my room. In the group stages I watched every match throughout..I was enjoying the wall to wall football atmosphere but feeling a little strange when I thought I really should be at work in the middle of the day. 

I have had a love affair with France for as long as I can remember.. Not something that would have gone down very well as a youngster growing up on a tough housing estate to the north of Nottingham in the 1980’s . 

The prepping for my transplant was going as predicted.. A mixture of IV and tablets to get my body ready for the coming treatment. 

I wasn’t sure what to expect of the transplant, in fact when it arrived in the room it was a little bit of an anticlimax.. Far from something quivering on a stainless steel sterile dish it was just a small bag of cells! 

All actually went well, I slept for three days solid following the procedure. Thankfully despite a lengthy list of tablets to take, I was able to go home two weeks later. 

I had a genuine expectation that my recovery would require little more than quickly building up my strength over a few weeks. 

The shock of the first walk I took outside remains with me to this day. A street light outside our house has a partner some twenty five metres further down the street. That first walk saw me just make the second post before turning back for home. I had covered a distance of fifty metres in total before collapsing on the sofa for the next hour. I managed another attempt later in the day, but that was it . 

I realised that my recovery was going to be more problematic than I had given it credit for . 

The Lance Armstrong quote :

“Always give 100% whatever your 100% looks like” 

never had more resonance . 

My Bone Marrow Transplant nurse at Nottingham City hospital had given me some great advice before I went home. She simply said listen to your body.. sleep when you are tired , do more when you feel like it. 

Over the next month my walking goals were diaried .. distance was impossible to predict so I used time to measure progress. Five minutes  of time meant I could walk round the block of houses on our street and back home covering about half a mile. 

Very slowly over many months the distances on flat roads became measurable in miles. The inclines were a different challenge. I got caught out on a few occasions, where I thought the walk I’d planned would be doable, only to need to call for a lift back home ! 

In my view, a positive approach to very literal small steps towards individual goals will allow you to eventually create enough strength of purpose to allow the progress to be significant.

Remember a journey of a thousand miles begins with a single step.

The key to long term recovery from the transplant process is not to expect too much too soon.

My progress has been over more than three years .. going from slow , short walks to slopes to hills .. 

Then onto my bike , repeat the process .. slow short rides building up strength.

The journey is a long arduous one , but when you consider the alternative there really is no choice.

The joy you feel when achieving your small set goals only increases as those goals improve your focus on what’s possible. 

BIOPIC TIMELINE 

March 2016 

Diagnosed with Acute lymphoblastic leukaemia.. 

August 2016 

Bone Marrow Transplant 

Relapse 

February 2018 

Accepted on CAR T-Cell trial at UCLH ...9th Uk patient. 

Remission 

July 2018 

The journey continues...