My diagnosis
“I first started to become unwell in 2003. I was a 39-year-old headteacher at the time and not one for going to the doctor. I was overweight and my job was stressful, so when I started experiencing what I now know to be leukaemia symptoms, I just put them down to my lifestyle.
I was having night sweats and found myself frequently out of breath. I was bruising easily, was suffering with bleeding gums and nosebleeds, and seemed to be constantly picking up infections. Eventually, after almost passing out while climbing the stairs, I went to see my GP. He suggested I had blood tests. And as soon as he had my test results back, he came round to my house and insisted I get myself straight to hospital.
It was a traumatic time. The weekend of my diagnosis was my youngest son’s fifth birthday and not really knowing what was wrong made it a very scary time. My wife, Carolyn, was a GP and clearly had her suspicions. When she trained as a doctor in the 1980s, a diagnosis like mine would have been terminal. Neither of us talked about what was going on – it was all too terrifying. I was afraid that I would not see my sons grow up.
Fortunately, treatments had improved since my wife’s medical training. On arrival at the hospital, I was given an immediate transfusion, followed by a heavy dose of chemo through a pump for six days. This was administered as an outpatient. Unfortunately, I suffered an infection caused by the chemo line and ended up spending several weeks in hospital after that.
The chemo hit the cancer hard and I then waited while my body recovered. Six months later, I was in remission and back at work. It had all happened relatively quickly.
I got on with leading a normal life, I changed jobs and moved house. After five years, I was signed off from my regular medical checks and put the experience behind me.
Relapse
But two years later, in 2010, I started to notice symptoms again. This time, I acted quickly. I did not allow my symptoms to become as severe as previously and so luckily my relapse was spotted early.
Treatments for HCL had changed since I had last been unwell. I was once again hit with a strong dose of chemo, but this time it was given to me in the form of four injections a day as an outpatient. I was also given another drug alongside it which was a fairly new therapy at the time, targeting the cancer cells specifically. The chemo was grim, but it was effective and because I had not been in such a low place to begin with, I was able to recover quickly. I once again suffered an infection which resulted in me spending a little while in hospital. But overall, I bounced back far quicker than when I had been unwell the first time. A bone marrow aspiration showed no trace of illness and I was in remission within a few months.
I am now in my 14th year of remission and although I insist on regular six-monthly blood tests, I am thankfully doing well.
After remission
Over the years, I had put on a lot of weight. But having had my brush with HCL and been given the chance to really live life, I decided that I would be crazy to mess it up myself. So a few years ago, I adopted a healthier lifestyle and with the help of dieting and exercise, I lost 12 stone. I have managed to keep the weight off and decided to take early retirement to really enjoy life to the full.
Having not run regularly since my twenties, I started running with my rescue dog, Hansen, a few years ago. He is a German Shepherd / Rottweiler cross and loves the exercise. I have done a few 5K Park Runs and just before Christmas, I took part in a 10K Christmas Pudding Run.
But the London Landmarks Half Marathon is the first really big challenge I will be taking on. It’s very exciting and all my family will be coming along to support me on the day. My aim is to just keep going – I don’t want to have to stop and walk along the way. Realistically, I imagine I can hope to finish in around two and a half hours.
I wanted to raise funds for Leukaemia Care because the information they provide to patients is invaluable. The doctors talk to you of course, but as a patient, it is hard to take in all the information, particularly when you are in a state of shock. Following my diagnosis, I read avidly about my condition and wanted to know all about it. The resources provided by Leukaemia Care were key to me understanding my illness. Running the London Landmarks to raise funds for the charity is my way of giving back.
I am proof that an HCL diagnosis is not a death sentence and hopefully, I can give hope to others. Treatments have changed drastically and improved so much over the years. I am certainly proof that you can survive and live life to the full…”
Support services
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).
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