My story starts on Wednesday 23rd July 2014 when I went to my local GP for a blood test following an appointment the week before where I was showing aneamic symptoms. By the afternoon, I had been informed of an abnormality with my blood and by the evening diagnosed with Acute lymphoblastic leukaemia with a white cell count of 126. My life was turned upside down.
Signs & symptoms
Thinking I needed a holiday, I took a short summer holiday in June with my partner to Bruges and Amsterdam where my energy levels were OK. On return to the UK my fitness showed no improvement so I booked myself into my local GP.
On the morning of July 23rd, I went for a blood test at my GP (my very first blood test!). Feeling OK, I went to work. However, I only made it to lunchtime and felt unwell so decided to go home sick for the rest of the day and get to bed. After receiving a phone call with my blood test results, I was told to go to The Christie Hospital in Manchester as soon as possible, 5minutes away from where I live.
That evening my bloods were taken again and I was diagnosed with leukaemia. I was moved into an isolation room in the new Palatine Treatment Centre where the shock hit me for the first time. Those first few days of tests, discussions with doctors and visits from family and friends seem like a blur now.
My treatment began early the following week. It was these first few weeks where the support from my partner, family and friends really helped me through. It would have been a lot tougher to deal with without all their kind messages, cards and hospital visits.
Unfortunately the first stage of treatment did not work for me and so the doctors suggested putting me on higher dose chemotherapy. I managed to avoid hospital for my birthday in early September and was re-admitted to begin the next phase on Sept 9th. 5 days of intense chemotherapy treatment was followed by 27 days in hospital while we waited for my bloods to pick up.
On day 32 I was discharged for weekend leave and told to report back the following Monday. To breathe fresh air on a warm October evening was a highlight.
On the following Monday I went back into hospital for the bone marrow results. I had residual blasts in my bone marrow and I was told my options were now limited to ‘experimental drugs’ or trials. This was a major shock to myself and all those around me as we had all hoped I would have achieved remission this time. Looking back this was the lowest point of my treatment and some of the darkest days of my life as up to this point I had remained in high spirits and been hopeful throughout.
Not to be beaten, a week later I was referred to the Royal Marsden Hospital in Sutton and put on a trial drug called Blinatumomab. As part of the trial I had to carry around my drug infusion in a small bag, including a portable pump. I nicknamed it 'baggy' and it came everywhere with me for the duration of the trial!
The trial was going well and my bloods were picking up. The doctors at the Royal Marsden let me move off the ward to a flat so I could get back some independence – this also made a real difference to my general well-being as I was no longer feeling ill. It was a bit lonely at that stage as my family could only really visit at weekends due to the distance. However, some family friends lived nearby and they really looked after me by coming to visit me and even taking me on days out when I could.
At the end of the 28 day cycle I had further bone marrow tests which yielded the result I’d been after since that fateful evening back in July – remission!
I moved back to Manchester in early December for a couple of weeks but my consultant suggested a second cycle of the drug for a deeper remission. Although disappointed to be missing Christmas with my family, I knew it was for the best and to be in remission over Christmas was all I could have asked for - a real bonus. Luckily my partner was able to come down to spend Christmas and New Year with me so I wasn’t too home sick!
I also got to meet one of my childhood heroes in Damon Hill while at the Royal Marsden due to a family connection. It was great to chat to him and take my mind off things for an hour or so! All I can say about Damon is he is a real top bloke.
Stem Cell transplant
The second cycle of Blinatumomab achieved complete remission and plans were put in place for my stem cell transplant back at The Christie in Manchester. Luckily I had a sibling donor with a 100% match so there was no delay in getting to the next stage.
I had my transplant on 19th February (now my second birthday!) and was discharged a few weeks later.
The post-radiotherapy fatigue struck me a few weeks after being discharged but with the support around me I coped and since then I’ve only been feeling better and better. I only had 2 further trips to hospital as an inpatient for infections so have been lucky in that respect.
Road to recovery
I’m now over 5 months post transplant and 1 year since diagnosis and beginning to get my life back together. I’m putting a few hours a week in at work and helping out around the house including cleaning my car – one of my favourite past times! I’ve done some pretty cool things since including back stage access to the Formula 1 at Silverstone and going to the Fairford Air Show.
I recently took a week’s holiday to South Wales, my first real trip away since my holiday in June 2014 and it was great to get away.
Generally I’m feeling better than I did at the early onset of the disease back in April-ish time last year and my energy levels have improved vastly over the last few weeks. I’m also down to hospital clinic visits every 2 weeks and quarterly bone marrow biopsies.
It’s been a tough year to say the least, not just for me but also for all those around me and I genuinely could not have done it without them. The support from friends, family and work colleagues has played a big part in getting through the last several months and something which I’ll be forever grateful.