Andy Jackson was diagnosed with Chronic Myeloid Leukaemia in September 2003 at the age of 18.
“It’s not every day that you hear the words ‘You have leukaemia’ and I still remember it as if it was yesterday.
I had been rushed to the Eye Specialist Unit at Kingston Hospital after a routine eye examination had revealed haemorrhaging in the back of my eyes. Two blood tests later and it was all confirmed. I had leukaemia.
My initial reaction was a mixture of shock and denial. I couldn’t have leukaemia, I thought, as I’d been working all summer. Besides, I was only 18 and had always considered myself relatively fit.
In hindsight, I was actually pretty ill. I’d been suffering from headaches and general tiredness all summer and had begun to get that head rush feeling you occasionally get when you stand up too quickly on a regular basis. I’d also lost a bit of weight and would wake up in the morning drenched in sweat. To cap it all off, my vision, which, up to that point, had been perfect, had become blurry.
Minutes after my diagnosis, I was rushed to the Hammersmith Hospital by flashing ambulance and after three further examinations and more blood tests I was admitted to its specialist Cancer Unit. I had Chronic Myeloid Leukaemia. It all happened so fast that I don’t really think I fully understood the implications of what it all meant. The doctors were fantastic in explaining what it all meant but were careful not to overwhelm me with information.
Me and Dad in Sydney six months before transplant
Lying in my bed on the ward that night my overwhelming feeling was one of guilt. I wasn’t scared, I wasn’t angry, just really, really guilty for adding to my families already sizeable worries. My Mum had been diagnosed with terminal bowel cancer only three months earlier and we had only just come to terms with it all as a family. God knows how my sister and Dad must have felt that evening. In the space of three months they had to brace themselves for the possibility of losing not one but two of their loved ones.
Over the next couple of days the doctors went about getting my white blood cell count under control. A healthy person is supposed to have between 4-10 white blood cells per ml of blood. I had more than 100 and it was these excess white blood cells that were causing all my symptoms.
I underwent a process called leukafresis which involved an amazing machine that took the blood out of one arm and removed the excess white blood cells before pumping the ‘clean’ blood back into my other arm. An incredible process that lasted a couple of hours and was repeated once more to ensure my white cell count was back within normal levels.
I then underwent the much dreaded bone marrow harvest. This is where the doctors put a needle into a bone in the lower portion of your back and extract a piece of bone marrow to run further tests on to identify the exact nature of the leukaemia and your bone marrow type. I’d be lying if I said that the process wasn’t painful – it was – but it was bearable and you don’t see the size of the needle until you’re finished as you have to lie on your side facing away from the doctor. This is definitely for the best, believe me!
After that, I was free to go home and would return to the hospital once a week for a check-up and discussion on the donor search. To keep the blood cell count under control I was put on a mild form of chemotherapy in the form of a daily tablet called hydroxyurea. This killed off the excess white blood cells on their creation, keeping me human.
My energy levels picked up quickly and I started to feel human again. The headaches stopped, the vision returned to normal and I felt, comparatively, great.
I had been a week away from starting at university when I was diagnosed but with a potential bone marrow transplant around the corner and my Mum struggling in her own battle against cancer, I made the decision to defer. Exeter was fantastic about it all and promised to keep the place open indefinitely.
Recovering on the ward after another round of chemo
With Dad having to go to work and Kate still at school, it was left to me to look after Mum when she was having an off day on her chemo cycle. I actually found this incredibly beneficial as channelling my efforts into looking after someone else really helpful in my own battle against cancer made me feel valuable again and gave me a sense of purpose – something which I felt I’d lost since being diagnosed. It naturally drew Mum and I closer, too, and we bounced off each other throughout our ordeal.
Shortly before Christmas I was told the news that they had found a donor which was a massive relief as with each passing week, I was getting ever more anxious that a donor might never be found. Mum, whose own condition had not improved, was delighted and for the first time had something to smile about (although she was hiding her own suffering well).
A date was set for May and I had a target to drive for. There was a long way to go but I was determined to do everything I could to ensure I had the best possible chance of the transplant being a success. This meant an end to drinking, an end to late nights and, for the first time, a concerted effort to get super fit. For me this meant training to run the London Marathon – something I had always wanted to do and without wanting to be morbid might never have had another chance to do again.
I completed the marathon in just under 4 hours – ironically still one of my quickest marathon times – and went in to the hospital to begin my treatment the following weekend. I’d never been fitter in my life and I’m convinced that that helped speed my recovery.
First up was three days of intense chemotherapy followed by two days of radiotherapy to blast away any of the bone marrow that was left behind. The process was intense and it took a little bit of me with it. I remember feeling so, so tired – especially after the radiotherapy. In fact, I was so tired at one point that I fell asleep watching the FA Cup Final. That has never, ever happened before and it’s never happened since!
As expected, my hair began to fall out in clumps on my pillow and it was recommended that I get my head shaved. Apparently people’s hair falls out because the chemotherapy is unable to distinguish between the cancer and other fast growing cells like hair or your cheek lining – not pleasant believe me! A word of advice for anyone going through the process – never, ever attempt to eat toast if you’re cheek cells are affected! You struggle to produce saliva and it will take you forever to eat!
Me post head shave!
However, whilst this phase of the treatment was an ordeal, it’s important to understand that it was bearable as every headache or felt nauseous they had something that could take away the pain. I was sick no more than five times during the whole process.
The transplant then followed almost immediately afterwards and was something of an anti-climax as the donor’s bone marrow – the difference between you living and dying – looked like a bag of tomato ketchup. It took a lot of faith to think that one small bag of reddish solution was going to fill the gaps left behind by my bone marrow.
A nervy period followed as we waited to see if the donor marrow took hold and started to produce healthy white blood cells. No one was more nervous than me but I tried to keep my feelings in check as my Mum’s condition had deteriorated rapidly during my time in hospital to such an extent that it became an ever increasing possibility that she might not live long enough to know that I had survived. I was effectively without an immune system where any infection could, potentially, have been too difficult for the body to overcome without an immune system even with the help of antibiotics and the best doctors in the land.
Fortunately, I did produce a white blood cell in record time. To this day, I cannot begin to describe how I felt when I got the news. It dawned on me that I had beaten blood cancer and that any complication now was not to do with the leukaemia but post-transplant complications. It was the only time I cried during my time in hospital and they were tears of undiluted, salty joy.
Ten days later, I was released from hospital and allowed to return home. Mum slipped into a coma and died peacefully in her sleep four days later, safe in the knowledge that I was going to be OK. I cannot begin to thank the doctors and nurses enough for all the work that they did to make sure that she lived long enough to see that happen – it was her final wish – and I will forever be in their debt.
Little Miss Giggles waiting for starters orders at the London Marathon
I will also forever be in the debt of charities like Leukaemia & Lymphoma Research as without their support and fundraising none of this would have been possible. The progress that has been made in the last fifty years is nothing short of extraordinary and I was amazed at the pictures of patients lying in bubbles in the same ward in 1960.
In the 9 years since the transplant I’ve gone on to lead a perfectly normal life and feel more alive than ever! I’ve been to university, I’ve been travelling, I’ve run 10 more marathons and even appeared on a TV game show!
You never know what’s round the corner but I can safely say that every day truly is a blessing and if I could offer one piece of advice to anybody going through or about to go through this process it would be to keep smiling and never give up no matter how hard it gets!"