April 20, 2020

‘In my darkest hour my consultant gave me the incredible, life-changing news that they had found a perfectly matched stem-cell donor.’ – Nick’s story

'In my darkest hour my consultant gave me the incredible, life-changing news that they had found a perfectly matched stem-cell donor.' - Nick's story

My Anthony Nolan Story began almost 20 years ago with a routine health check-up at work, which revealed macrocytosis (enlarged red blood cells). Investigations followed, and tears of relief that I did not have HIV quickly turned to tears of fear when I was diagnosed with myelodysplastic syndrome. I had never heard of MDS, but my first consultation with the wonderful haematology team at King’s College Hospital left me in no doubt about the seriousness of the condition.

Nevertheless, being asymptomatic, life soon settled back into its normal routine. Over the subsequent decade, I did an MBA in Durham, got married, had a daughter and spent over three years working in Tokyo – returning to the UK only after the 2011 Great East Japan Earthquake and Fukushima nuclear disaster. Truth be told, I had almost forgotten about my MDS diagnosis. Life was good.

Then, in 2013, a string of health problems including bleeding gums, breathlessness and a urinary tract infection culminated in a devastating diagnosis: acute myeloid leukaemia. These three words dropped like bombshells; but, unsure how to react, after tears, a cup of tea and an arm round the shoulder from the nurse, I simply went back to the office and got on with my work. Telling my wife, and then my parents, about the diagnosis was one of the hardest things I’ve ever done.

Two days after receiving my diagnosis I found myself fulfilling a work commitment at Goodwood motor racing circuit, incongruously dressed as a WW2 army officer for the Goodwood Revival. Mid-morning, I had a phone call from the hospital telling me that I was severely anaemic and would have to be admitted immediately. By lunchtime my lower legs were in excruciating pain, and after a brief stint in the medical tent I had to make my way back from Chichester to Maidstone where I was admitted to hospital. After a disturbed night and my first of countless blood transfusions, my wife and I met my consultant who told me earnestly that if I didn’t get treatment for my leukaemia I would ‘succumb within six months’. Of course, it was a ‘no brainer’, and I gratefully agreed to the proposed treatment plan with the ultimate aim of a ‘curative’ stem-cell transplant. While trying to be optimistic and positive, I couldn’t help but fear the worst.

I was allowed home to spend some quality time with my family and get signed-off at work by my incredibly understanding and supportive employer, and within two weeks I was admitted to hospital to begin treatment. Little did I know at the time, but I would go on to spend 96 consecutive days in hospital, the majority of it in isolation.

Nothing really prepares you for the effects of chemotherapy on your body, your physical appearance, sense of taste and smell, and, of course, your mind. That first course of ‘induction’ chemotherapy was tough, with seemingly endless rounds of observations, blood and other tests, fevers, antibiotics, blood and platelet transfusions and bone-marrow investigations. There then followed the seemingly interminable wait for my blood counts to recover: the early morning blood test; then the morning ward round and the eagerly awaited test results. The recovery never came.

One thing that did eventually recover though was my appetite, and I can still recall the desperate craving for a hot beef chilli. My brought me a ready-meal version from Waitrose, and I swear nothing has ever tasted so good!

Looking back now, that period after my first round of chemo really was the lowest of my whole AML journey. The doctors seemed at a loss as to what to do about my counts and how to get on top of the exhausting fevers. I was prescribed anti-fungal drugs which gave me terrifying night-time hallucinations, and finally my consultant ordered my Hickman Line to be removed, as that was the most likely source of the infections. This felt like a major setback to me, as I knew I would need to have another line inserted at some stage. But it seemed to work. There was also a constant battle to reduce the swelling in my legs because of all the IV fluids I was taking. The treatment plan for three rounds of chemotherapy had been derailed.

What really helped me to get through that initial, truly scary and debilitating, phase of treatment was the incredible support of the hospital staff, family and friends. Sometimes I felt guilty for being so tired and lacking energy that I was barely able to converse with friends, family and colleagues when they visited, often from far away. Hopefully they understood. I was also saved by music, especially after I was reunited with my acoustic guitar. My poor neighbours!

Then, suddenly a breakthrough. In my darkest hour, after about six weeks in hospital, my consultant gave me the incredible, life-changing news that they had found a perfectly matched stem-cell donor in the UK, and that I would be transferred to King’s as soon as possible to prepare for my transplant. I knew I still had a long way to go, but at last there was real hope.

My transfer to King’s wasn’t the most auspicious of starts: after being blue-lit in an ambulance up the M20 and through the streets of South London I arrived woefully under-dressed for the freezing cold November night and promptly suffered uncontrollable rigors. It did get better after that, however.

As I prepared for my transplant, the intensity of the treatment and care stepped up to a whole new level. There was barely time to be bored, with the constant comings and goings of the ever-professional and caring staff, from the cleaners through to the consultants. In some of my lowest moments, it was those late-night heart-to-hearts with some of the more experienced nurses that really lifted my spirits and kept me going.

After a few weeks in King’s being tested to within an inch of my life, the seven-day countdown to my transplant began. The procedure involved a particularly aggressive regime of ‘conditioning’ chemotherapy, and my first doses of immunosuppression drugs.

Finally, the big day arrived. My wife arrived early for a guitar sing-along, and then shortly after 3pm I started the 45-minute infusion of donor stem cells. I remember a real mixture of emotions as the cells were dripped in through my Hickman Line: nervousness, excitement, hope and, of course, gratitude for the sacrifice made by a complete stranger. The date was 3 December, and I still celebrate the date as my ‘other birthday’.

The following days and weeks brought more ups and downs as I waited for signs of successful engraftment and for a recovery in my blood counts. The downs included acute back pain as my bone marrow re-populated itself with a little help from GCSF injections, and not seeing my young six-year-old daughter for four straight weeks. The ups included some lovely visits from friends and colleagues, and receiving a beautiful gift of 1000 folded paper cranes from colleagues in Japan. A moving and inspiring symbol of hope and survival.

Eventually, after 86 days in hospital, I was allowed to go home – just in time for my daughter’s birthday and Christmas. It felt wonderful to be back at home with my family, but also slightly daunting. I had become institutionalised by my hospital stay.

But my return home last only seven days, and I was re-admitted to King’s the day after Boxing Day with a painful bladder infection which turned out to be BK virus – a common occurrence in transplant patients. That meant that I ‘celebrated’ the New Year in isolation, but thankfully the new year brought a change of fortune and after another 10 days in hospital I was discharged again. This time, for good!

Once back at home, the long road to recovery began in earnest. At first, it was short country walks with my wife and daughter, as my strength slowly returned and I got used to being outside again. But by April I was starting to jog very gently, and I remember it made me ache in places I never knew existed!

Life took another huge step towards normality in May as I began a graded return to work. It was extremely tiring at first, but rewarding to be back among the colleagues who had supported me every step of the way through my treatment.

It was only really after my treatment and during my extended convalescence period that I became fully aware of the Anthony Nolan Trust and its amazing work. While I was working my way back to full fitness, I started to think about how I could raise money for the charity and help others to benefit from the same life-saving treatment as I’d had.

The first challenge I set myself was to run my local half-marathon, just over fourteen months after leaving hospital. Despite being a flat course, the run was every bit as tough and painful as I thought it would be. But I managed to keep going, eventually crossing the line hand-in-hand with my wife. It was my slowest-ever half-marathon finish time, but the feeling of elation – even euphoria – as we crossed the line was absolutely amazing. And what made it even more rewarding was the knowledge that I had raised hundreds of pounds in sponsorship for Anthony Nolan from generous family, friends and colleagues.

In 2016 I took up cycling, inspired by reading stories of other Anthony Nolan fundraisers, and since then I have taken part in a number of long-distance rides including Ride London-Surrey, the Dragon Ride in South Wales, the Chiltern 100 and, most recently, the Buttertubs Sportive in the Yorkshire Dales. The rides have been arduous and physically demanding, but at the toughest moments, grinding up a long, steep hill like the Devil’s Elbow in Wales or the Buttertubs Pass in Swaledale, I’ve always found enough inspiration in the spirit of Anthony Nolan to keep on pedalling and make it to the top.

Supporting Anthony Nolan has given me a new purpose in life, beyond the simple aim of getting back to normality after my stem-cell transplant. I want to keep on pedalling and running, getting fitter and stronger while raising awareness of Anthony Nolan and raising funds for its life-saving work.

Thank you for saving my life and inspiring me!

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