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Relapse: just another hump
How can you keep positive when the worst occurs?
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. It meant I needed to have another one to double check.
On reflection, I think the signs of relapse had begun to surface before the news came.
I was sleeping more heavily and frequently, got tired very quickly and most worryingly of all had that cold pallor on my skin particularly in the forehead area.
I put much of it down to cycling over-exercise. I was on that bike 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.
The Direction I Travelled
The journey to the end of my remission was, I have since found out, statistically quite likely. Yet the idea cancer might return was furthest from my mind eighteen months earlier, when I walked from the haematology department out into the warm autumn sun. I pulled my small, blue-wheeled case through a beautiful carpet of horse chestnut leaves and general conker debris in a jubilant 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 I looked for the best way to keep positive and to get both physically and emotionally strong.
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 ground-breaking brand new therapy called CAR T-Cell.
I guess the biggest fear 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.
So when it did happen, I needed inspiration.
I took 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 chance of survival percentage score, it’s difficult to explain just how that feels.
The Wait for Treatment
The time between the sign up of the new therapy and the start of my medical trial was around five months. While I waited, I received conventional relapse treatment with a few twists. Keeping positive during long hospital stays back in Nottingham, stays often in isolation to minimise risk of infection, was relatively straightforward.
This is because I set up a static bike in the room and continued my exercise regime with sit-ups, push ups, and stretches. In fact, I tried anything to add to my strength and focus on reaching the start line for the therapy.
I was allowed out regularly to walk around 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!
Ten days ahead of the treatment, I was transferred down to UCLH to start prepping and body conditioning. My stats were well within tolerances for the cells to be given.
Thankfully, I had indeed avoided most of the infection 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!
Living the Dream Outcome
Over a year on the therapy seems to have done its job. While I am still technically on the trial for monitoring and quarterly biopsy checks, this is strictly as an outpatient.
When I first met the trial team the phrase ‘dream outcome’ was mentioned a lot. 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: it’s chain, gears, and 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, 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 I face another relapse, I know 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.
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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