Andy J
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Living with leukaemia

Andy J
Posted by
01 Oct 2013


It’s safe to say that when you hear the words ‘you have blood cancer’ your life is never quite the same again.

I was 18 when I was diagnosed with chronic myeloid leukaemia and at the time was just a week away from starting my degree in History and Politics at Exeter University – something I was really looking forward to after a turbulent summer spent working for the first time, partying too much and coming to terms with the fact that my Mum was suffering from terminal bowel cancer.

The stress of it all had begun to take its toll, too, as I had begun suffering from headaches and general tiredness. I’d also begun experiencing that head rush feeling you occasionally get when you stand up too quickly on a not infrequent basis. Looking back, I’d also lost a bit of weight and was waking up in the mornings with my bed drenched in sweat. To cap it all off, my vision, which had previously been perfect, had begun to get a bit blurry. However, as a headstrong, stereotypical 18 year old boy, I failed to take heed of any of these signs and only agreed to go to a general MOT to get my Mum off my back, starting with an eye test.

Thank God I did as this kick started the whole process that unearthed my leukaemia before it was too late. The optician discovered that I had haemorrhaging in the back of the eyes and was rushed off to see the Eye Specialist at Kingston Hospital where several examinations and two blood tests later, it was all confirmed. I had blood cancer.

My initial reaction was a mixture of shock and denial. I couldn’t have blood cancer, I thought, as I’d been working all summer. I was only 18, didn’t smoke, played in all the sports teams and had always kept myself relatively fit.

I didn’t have long to dwell over the news as within minutes of my initial diagnosis, I was rushed to the Hammersmith Hospital by flashing ambulance for further tests. After a further blood test and several examinations by all manner of doctors I was admitted to the specialist Cancer Unit which, incidentally, is one of Leukaemia & Lymphoma Research’s Centres of Excellence.

I don’t really remember much about the moment when the doctors told me that I had Chronic Myeloid Leukaemia as everything had happened so quickly. I certainly didn’t fully understand all the implications of it all and what it might mean despite the doctors’ best efforts to explain it.

Lying in my bed on the ward later that night once the doctors had left me alone and my Dad had finally convinced my Mum it was time to go, all I could feel was an overwhelming feeling of guilt for adding to my family’s already sizeable worries.

Initial treatment

The doctors’ first priority was to get 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 by slowing down my blood supply.

To remove these meddlesome excess white blood cells, I underwent a process called leukapheresis which involved an amazing machine that took the blood out of one arm, removing the excess white blood cells and then pumping the ‘clean’ blood back into my other arm. It only took a couple of hours and I have a strong memory of Andrew, the nurse overseeing the process, singing along to Missing by Everything But The Girl. He was awful, by the way, but his tone death singing and Dad dancing made me laugh and I figured it was a small price to pay for getting my white blood count back to within normal levels.

Following my leukapheresis treatment, I underwent the much dreaded bone marrow harvest. This is where the doctors put a giant 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 – because it hurt a lot – but at the same time it was bearable. I think the anticipation is much worse than the reality, too, and I’m really glad I didn’t see the size of the needle until after the sample had been taken as that would have made the whole process much, much worse!

After that, I was free to go home and only had to return to the hospital once a week for check-ups whilst the doctors scoured the bone marrow registers for a suitable donor. 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.

My energy levels picked up immediately and I began to feel like a human being again. The headaches stopped, the vision returned to normal – I was better than I could remember feeling in years.

With a potential bone marrow transplant around the corner, I made the decision to defer going to university for they year to look after my Mum who needed someone to go with her to her chemo appointments while my Dad went to work and my sister concentrated on getting herself through her A-levels.

I grew up a lot during this time, learning to cook and clean like a responsible adult and I actually found that channelling my efforts into looking after someone really helped me in my own battle against cancer. It gave me a sense of purpose and made me feel like I was in control again – something which I felt I’d lost since being diagnosed. It also drew me closer to my Mum and we bounced off each other throughout our ordeal.

Preparing for transplant

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 she had something to smile about (although she was hiding her own suffering well).

A transplant date was set for May and at last I had a target to drive for. I was determined to beat my leukaemia and I did everything that I could to ensure I had the best possible chance of the transplant being a success. I stopped drinking and going out late and, for the first time, I got into running long distances.

Running became my release. It was my thinking time and I felt free of everything when I ran. My new found love of running culminated in me deciding I wanted to run the London Marathon which was something I had always wanted to do and without wanting to sound morbid was something that I might never have had another chance to do if the transplant was ultimately unsuccessful.

So, I went to a proper running shop for the first time and bought myself my first pair of real trainers and began training, hard. At the same time, I made the decision to start raising money and awareness for leukaemia charities, pestering everyone I knew with sponsorship forms and putting collection buckets in all the local shops and cafes. The response was overwhelming and before I knew it we had raised £35,000!

It felt great to have the support of so many people and I completed my fist ever marathon in just under 4 hours – ironically still one of my quickest ever marathon times! Achieving something positive during the most negative of situations was enormously rewarding and helped me to feel like I had ownership over my cancer rather than the other way round.

A week after the marathon I went in to the hospital to begin my treatment feeling fitter than I’d ever been in my life with a few friends that I had not anticipated.

During my fundraising in the build up to the marathon, I had attracted the attention of a few people in the media, including an up and coming documentary maker who wanted to do a documentary on someone living with cancer. After a bit of filming and lengthy discussions we agreed to be the subject of his documentary on the basis that it might raise awareness of what it was like to undergo a bone marrow transplant. As events would transpire, my transplant would only be part of the story but we didn’t know that at the time.


Treatment began with 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!

However, whilst this phase of the treatment was an ordeal, it’s important to understand that it was bearable as for every headache there was a pill and for every bout of nausea there was a drug that could take away the pain. I was sick no more than five times during the whole process – 25 years ago I’d have been lucky to have gone a day without being sick that many times, so harsh was the treatment back then.


The transplant itself 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. Without question this was the most difficult time as I was effectively without an immune system where any infection could, potentially, have been too difficult for the body to overcome.

Looking back, I was a little scared during this period. However, I tried to keep my feelings in check as my Mum’s condition had deteriorated rapidly during my time in hospital. Her own treatment for bowel cancer had long since stopped working and with it the doctor’s predictions on life expectancy had nose dived to the point where it had become an ever increasing possibility that she might not live long enough to know that I had survived.

I did everything I could to try and hurry along the process, literally following everything the doctors told me to do to the letter. I brushed my teeth five times a day, drank more water than I’ve ever drunk and even got on an exercise bike and pedalled in my pyjamas for as long as my emaciated body could bare it. The doctors and the nurses were fantastic, too, and kept me going. Their expertise and my determination ensured that all our prayers were answered as I produced a white blood cell in record time.

To this day, I cannot begin to describe how I felt when I got the news. I had beaten blood cancer as while there was still a long, long way to go and all manner of post-transplant related problems I could encounter, leukaemia would no longer be the cause directly. I remember bursting out into tears of undiluted joy speaking to the documentary crew. It was the only time I cried during the entire time I was in hospital.

Ten days later, I was released from hospital and allowed to return home. At this point, safe in the knowledge that I was home and my operation had been a success my Mum slipped into a coma. She died peacefully in her sleep four days later. I cannot begin to thank the doctors and nurses at the Hammersmith enough for all the work that they did to make sure that she lived long enough to see me home – it was her final wish – and I will forever be in their debt.

Life after treatment

None of this would have been possible, either, without the help of researchers and charities like Leukaemia & Lymphoma Research. The breakthroughs in treatment that have been made in the last 25 years have been nothing short of extraordinary and I feel truly blessed to have benefitted from them.

Such breakthroughs have allowed me to do some pretty extraordinary things since my transplant in 2004. I’ve seen the sunrise over Angkor Wat, I’ve run from John O’Groats to Land’s End dressed as Mr Happy and I’ve even appeared on a TV game show!

I've had a couple of complications recently, but every day truly is a blessing and I’m delighted to now be working for Leukaemia & Lymphoma Research as without them and other charities like them, I wouldn’t still be here today.

My life has definitely changed for the better since having had leukaemia. I now appreciate the important things in life and realise that life is precious. If I could offer one piece of advice to anybody going through or about to go through it all it would be to keep smiling and never give up no matter how hard it gets!

I'd like to leave you with this video a friend put together whilst I was running from John O'Groats to Land's End which I hope gives you some idea of the journey I've been through and helps you realise that anything is possible!

Together we will beat blood cancer, I'm sure of it. In the meantime, remember that you are not alone!

If you've been affected by blood cancer and would like to share your story with us, we'd love to hear from you.


Violet G

Very inspiring Andy!!!


You are a champion Mr Happy !
Keep smiling and RUNNING like you do ! amazing !
Thank you for sharing your experience...:)

Emma W

Thank you for sharing your story, Andy. Finding the strength and courage to smile and inspire others after such a journey is incredible. I think we need to make you a one-off Mr Unstoppable suit and create a whole new challenge.


Thanks Claude. Once this nonsense with my lungs is sorted out, I'll get back on the road - challenge accepted!


Thanks Violet :)


Andy, you are such an amazing person and a true inspiration. Thank you for sharing your story.

But you may regret agreeing to a Mr Unstoppable suit :-) Design Team request accepted! Watch this space...


Thanks Emma! Lungs permitting, I'll definitely take on another challenge for LLR. In the meantime, get the design team on to creating that Mr Unstoppable suit - I won't stop until we beat blood cancer!


Bring it on!


Andy, thanks so much for sharing your story, which couldn't have been easy. It really is, as others have said, totally inspiring and I'm sure will inspire others to keep going, be it in sickness, in caring, in grief or in a marathon in fancy dress. Good on you Andy.


I am really impressed by you Andy! Looking forward to our coffee catch up now to hear more!


Haven't you tried gleevec or other tki drugs before having transplant?


Hi Tine,

I was offered gleevec but 10 years ago the treatment was still very new and the only known 'cure' was the bone marrow transplant. Offered the chance again, knowing then what I know now I may well have opted for gleevec or one of the other TKI drugs as it would have removed my exposure to radiotherapy which has had lasting side effects.

Thanks so much for your message,



Thank you for the response :). I am 21 yrs old newly diagnosed with cml and i am very glad i found this site, i dont really know who to talk to aside from my mom and my doctor because i don't want my friends to feel sorry for me. My doctor prescribed tasigna for my cml because he said it is much superior to gleevec but im quite hesitant about it because of the side effects. Do you know someone who 's on tasigna? They say gleevec has mild side effects conpared to tasigna so im really confused whick to take.


You've come to the right place, Tine!

I know exactly how you feel in regard to your friends. I didn't want mine to worry about me or feel sorry for me either and didn't actually tell them to begin with as they'd only just gone to university. However, as soon as they found out (my Mum and Dad let slip) they came rushing to my side to show me their support and whilst at first I was cross with my Mum and Dad for telling them, I was really pleased that they did in the long run as they didn't act different around me at all and were able to help me feel normal.

I imagine you are going through a lot right now - the beginning is always the toughest. I actually had a bone marrow transplant so didn't use Gleevec or Tasigna and don't know of anyone personally who has. However, I do know somewhere you will definitely find someone who has in the form of the CML UK facebook group. It's run by a guy called Nigel Deekes and they're all fantastic - a bit like a family. Post anything on there and they will get back to you in no time. Here's the link to their page:

I've found them incredibly useful even though they weren't around when I was going through treatment. I've also found blogging about my experiences really therapeutic so don't be afraid to sign-up to Patient Support and get blogging about your experiences. In the up coming weeks and months we're going to be introducing things like live chat rooms, forums and a friend facility so that you can have private conversations with people who you can relate to.

Hang in there, Tine, and please don't hesitate to get in touch if you need any more advise/support - it's what we're here for! This is a community and we will help you every step of the way with your treatment.