Relapse - Facing your return to square one demons
I guess one of , if not the biggest fear during the whole treatment phase is the ever present spectre that you may relapse . All those hours of treatment, often many weeks or months spent getting into remission have been to no avail. All your hopes, dreams and aspirations have actually in the end , when all said and done amounted to nothing.
So how can you keep positive when the worst does occur ?
My leukaemia relapse came as quite a shock following a fantastic eighteen months in rude remission.
Having been out for a fabulous bike ride high in the Peak District in the morning I returned home to a message on the phone. My last biopsy check was in and showed inconclusive results which meant I needed to have another one to double check.
The journey to the end of my remission was, I have since found out ,statistically quite likely to happen.
That situation was furthest from my mind eighteen months earlier, when I walked from the haematology department out into the warm autumn sun, pulling my small blue wheeled case behind me through a beautiful carpet of horse chestnut leaves and general conker debris in the search for the car .
Being in remission meant I was well enough to go home to recover .. and recover I did . It took many months and much soul searching as to the best way to keep positive and to get both physically and emotionally strong.
“ Always give 100% whatever your 100% looks like “
I took that and many other Armstrong quotes with me wherever I went. I find they help me draw inspiration and energise my thoughts when it would be so easy to get overwhelmed.
Until you have faced your mortality with a chances of survival percentage score, its difficult to explain just how that feels.
On reflection I think the signs of relapse had begun to surface towards that diagnosis as 2017 gave way to the new year.
I was sleeping more heavily and frequently, got tired very quickly and most worryingly of all had that cold palour on my skin particularly in the forehead area.
I put much of it down to cycling over exercise , I was on that bike virtually daily despite being told both medically and by my worried friends and relatives that I was doing too much.
I didn’t think “too much “ even existed, all I knew was that the riding was so exhilarating and every mile I did was taking me another step further away from where I had been .
Following a frank discussion with my consultant the new direction for me to take post relapse was agreed upon.
I was heading down to London to get signed up for a groundbreaking brand new therapy called CAR T-Cell.
The time between the cells being prepared and me being able to be given them in a medical trial was around five months.
The “ trick”was , as my fantastic UCLH trial consultant explained ,was to keep me alive in the intervening period using ironically the conventional relapse treatment with a few twists.
It never occurred to me that I might not make it through to the end of July and treatment day.
Keeping positive during long hospital stays back in Nottingham, stays often in isolation, to minimise risk of infection ,was relatively straightforward.
In a word , exercise.. static bike work in the room followed by sit ups , push ups ,stretches in fact anything to add to my strength and focus on reaching the start line for the therapy.
I was allowed out regularly to walk round the hospital perimeter, a distance of just under three miles.. I did that many times , fully masked up and trying to avoid the gaze of people on the way round for fear they might start talking to me and pass on an infection!
I was transferred down to UCLH ten days ahead of the treatment start for prepping and body conditioning.. My stats were well within tolerances for the cells to be given.
I had indeed avoided most of the infection thankfully and sat up in my bed like a child on Christmas Day , on the 31st July 2018..The start line was painted and glinting in the sunlight , it was just a matter of crossing it now... my unique and individual chariots of fire run had begun !
Over a year on the therapy seems to have done its job.. I count my remission days from that start line point . I am still technically on the trial for monitoring and quarterly biopsy checks , but strictly as an outpatient.
When I first met the trial team the phrase “dream outcome “ was mentioned a lot, not in the way that I should expect it ,but in the way that that may only very possibly if everything worked out be achieved. I have taken that phrase to mean the life I am actually now living .. The dream outcome to me is to be out on my bike on a crisp, sunny morning with the wind at my back pushing me along the familiar country lanes.. The only sound is my heavy breathing and the click and whirr of the bikes mechanics .. chain , gears ,wheels turning.
How long my personal dream outcome is to last is up for debate, but one thing is certain is that whatever changes in my health situation or not, I would do it all again in a heartbeat if the need arose.
Relapse for me wasn’t the end game, just another hump in the leukaemia journey , if it comes again then it will be robustly dealt with again. The journey back to long term sustainable recovery was never going to be straightforward but the efforts will be worthwhile, it just takes time.
Diagnosed with Acute lymphoblastic leukaemia
Treatment journey successful
Remission August 2016
Relapse February 2018
CAR T-Cell therapy
Remission July 2018
Still keeping those pedals turning .. The journey continues..
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