‘My dying wish is everyone who reads this will think again about bone marrow donation’
May 19 2008 by Neil Atkinson, Huddersfield Daily Examiner
“I’M 26 years old and will be dead in a matter of months.
“I will die from the leukaemia I have been battling for nearly a year and a half.
“There is only one thing left for me to try and achieve – my dying wish is that everyone reading this will think again about bone marrow donation.”
The words are those of the Examiner’s Adrian Sudbury, the journalist handed a death sentence last week by doctors.
They confirmed his worst fears – that the leukaemia cells had returned, despite the bone marrow transplant that had given him a new lease of life.
Brave Adrian has accepted his fate but now wants to persuade others to join the marrow donor register, in the hope they can help save lives, both in the UK and abroad.
He said: “In about 75% of cases the procedure is not too dissimilar from giving blood.
“If more people knew that then the 7,000 children and adults, who are still waiting for a transplant, might have a chance of surviving.
“As it stands they will die.
“Every one of you reading this has the unique opportunity to save another human being's life, or at least give them the chance that I had.
“If it wasn’t for the kindness and generosity of a 30-year-old woman in Germany I would have died well over a year ago.
“I suppose it’s always nice to be a world first but I was diagnosed with two types of leukaemia in December 2006, a specific combination the doctors had never seen before.
“Up until then I was a fit and healthy 25-year-old working for the Huddersfield Examiner.
“I played football – not particularly well – did boxing training, was a good runner, ate sensibly and didn’t smoke.
“Then for some months I noticed that I was getting regular chest infections and couldn’t shift them.
“Progressively I started to deteriorate. I became increasingly pale and then this chronic fatigue set in.
“The levels of exhaustion were extreme so much so that I needed to lie down half way through washing the pots.
“Naturally I went to see the GP only to be told I had a virus.
“His advice was: “Go home, rest, and have a warm drink of honey and lemon.”
“Although this beverage was tasty it did little to alleviate my symptoms.
“The next day I drove myself into Sheffield’s A&E and basically didn’t leave.
“The doctors there realised that something was seriously wrong and referred me up to the specialist haematology ward.
“It was quite a scary experience.
“I could see all these “bald-chemo heads” and emaciated figures. The medical teams were talking about taking a bone marrow sample and I knew from that point that leukaemia was the most likely outcome.
“When the diagnosis was finally made it was heartbreaking for me to see my family.
“This is something I write about happening to other people, or read in the papers – not something that would ever happen to me.
“My girlfriend Poppy, my parents and sister, all met with the top consultant who explained my diagnosis and the treatment that would follow.
“I remember asking: “How long would I have lived if I hadn’t driven myself into hospital?”
“He replied: “Maybe another fortnight – it’s hard to tell.”
“I suppose there was no other choice but to crack on with treatment.
“The doctors were treating me for Acute Myeloid Leukaemia. The first line in the fight against this disease are several cycles of chemotherapy.
“For some cancers you can come in, receive your chemo, then go home.
“Leukaemia and other blood cancers are more challenging.
“The cancer is in your bone marrow; the tissue responsible for making red blood cells and white blood cells.
“White blood cells form the foundation of your immune system.
“When the chemo destroys these cells you have to stay on the ward until your immune system regenerates. This can take up to three weeks.
“During this time you are either incredibly bored or incredibly ill.
“The chemo itself was awful and I reacted very badly. It often caused me to be sick, it made my mouth and insides burn and left me with a disgusting metallic taste.
“It was around this time that I decided I wanted to write about my experiences.
“Just so you know I generally loathe blogs. It seems like if anyone gets ill these days they have to share it with the world.
“I decided that if I was going to write this blog it would have to be something a bit different and make full use of the multimedia facilities we now have at our disposal.
“Although it looked as though we were making progress, tests showed that the leukaemia was still there and the only option then was to have a bone marrow transplant.
“Thankfully, as I mentioned before, there was a match for me in Germany. I still can’t express adequately how grateful I am for this incredible act of altruism. There are strict anonymity rules governing donation but I would have loved dearly to have met her.
“The transplant itself is easy. It’s just a half hour infusion of cells.
“It’s the five weeks in a special isolation room that’s the nightmare.
“Of course I tried to stay positive but I hated my experiences in there.
“You are only allowed three visitors and you are constantly tired, feeling ill, sore. Randomly I lost the use of my legs for two days and had to be wheeled into the shower by the nurses. But it wasn’t all good fun.
“I think the hardest aspect for me was that it seemed like the toughest regime outside of Guantanamo Bay.
“Treatment continued throughout the night and the constant interruptions and sleep deprivation were so hard to deal with.
“The only positive I could see was that at least journalistically I was doing something original.
“We had filmed my bone marrow transplant and a number of key stages during my stay in isolation.
“Finally when those five weeks passed I was safe to come out and come home.
“It was simply the most incredible feeling.
“Things then looked like they were improving and on September 11 (I kid you not) I got the double all clear.
“I was making good progress and aiming to make a full recovery and return to work.
“Unfortunately another kick in the face was just around the corner.
“I developed a post-transplant complication called chronic Graft versus Host Disease which left my skin flakier than a flap jack.
“The only cure for this was a massive dose of steroids.
“Now despite these drugs expanding my face by approximately eight times, and making me look like an entrant in the World’s Strongest Man, they had their plus sides too.
“I could eat and drink like I used to and had an unnatural amount of energy.
“After feeling so weak for such a long time this was a most welcome change.
“During this time Baldy’s Blog picked up some major awards too. It won best feature writer at the Yorkshire Press Awards, best online feature from the national Guild of Health Writers and, bizarrely, an international award at the Weblog Awards in Las Vegas.
“For a pretty difficult year it was great to pick these up and really enjoy the good times that came with them.
“Christmas came and I proposed to my long-term girlfriend Poppy.
“She accepted and everyone seemed to be incredibly happy looking forward to a great August wedding.
“Starting last month my life suddenly and spectacularly derailed.
“First of all Poppy said she didn’t feel the same way about me any more and wanted out. She left me.
“I was heartbroken and utterly lost.
“Then the bone marrow test results showed that the leukaemia had come back big time.
“A further test confirmed that it was out of control and that further treatment would be unlikely to cure it.
“My decision was simple.
“Now I just want to spend as much time with my friends and family as possible, as well as raising a bit of awareness.”
This feature is being circulated throughout the Trinity Mirror stable of newspapers.
There are two bone marrow donor registers in the UK – one run by the Anthony Nolan Trust and one run by the National Blood Service. When a patient needs a donor, both registers are searched so you only need to join one.
To register as a donor, you need to be:
Aged between 18-40 although donors stay on the register until their 60th birthday.
In good health
Weigh at least 8 stones or have a body mass index of less than 35.
Be living in the UK for at least the next three years.
Be prepared to donate anonymously to any patient, anywhere in the world.
There is a particular shortage of young men and people from ethnic minorities on the donor list.
To sign up, you can do one of two things. If you give blood, you can ask the nurse if you can be put onto the register. Alternatively, you can sign up through the Anthony Nolan Trust.
They hold donor recruitment clinics where you can drop in, give a blood sample and sign up. Or you can contact the charity and ask for a kit, which you take to your GP. The GP will take a blood sample which you put into the special package provided and post off.
Once your sample has been received, the charity will screen it and conduct tissue typing and, if there are no problems, put you on the register.
For more in depth detail about each method, plus videos, visit Adrian's blog at http://baldyblog.freshblogs.co.uk/2008/05/a_plea_for_more_bone_marrow_do.html