I remember the day I got the call. Someone from Anthony Nolan was on the phone. My heart was pounding. Was this it? Had I been matched? Was I going to be a stem cell donor?
A thousand thoughts steamrolled through my head. But no, as it turned out, this wasn’t my time. They were calling to check in. So I confirmed my details and got back to the issue in hand: work. Only… that wasn’t it. Even now that call stays with me. Not just because of how I felt at the prospect of being a donor (a weird mix of fear and excitement), but because I really wish I’d taken the time to tell them why I wanted to be one in the first place.
I signed up to the Anthony Nolan stem cell register because I read a blog.
This blog didn’t just change how I felt about stem cell donation, it helped change how people across the country felt about stem cell donation too — and on World Bone Marrow Donor Day, I want to use this post to share that story.
Meet Adrian Sudbury, the man behind “Baldy’s Blog”
I never met Adrian, but I felt like I knew him.
A fellow “Midlander”, he was the grandson of a close family friend, and at 25, a very similar age to me (way back when, obviously). I remember being told the story. That one where Adrian ignored his GP’s advice to “drink a cup of hot lemon and honey” and drove himself to A&E.
It’s just as well. Because as it turned out, Adrian wasn’t just tired. He had leukaemia.
"How long would I have lived if I hadn't driven myself into hospital?" I asked."Maybe about another two or three weeks, it's hard to tell," my consultant replied.
That revelation was like a slap in the face. Everything else that was swirling around my mind; being a cancer patient, the length of time I would be in hospital, chemotherapy and its awful side effects, the fear of not achieving remission, all collapsed into a single moment of clarity — there was no choice but to start treatment."
Adrian Sudbury, Baldy’s Blog: Introduction
If that wasn’t enough to process, tests went on to reveal that Adrian was living not just with one type of cancer, but with two.
Didn’t think it was possible?
It wasn’t. But then, nothing is, until it happens.
“Needless to say being diagnosed with two types of leukaemia was a bit of a blow.
Yet bizarrely my ego was purring at potentially being a sort of 'world first'.
If only it had been in something slightly less life threatening.”
Adrian Sudbury, Baldy’s Blog: More bad news
A traditional “web-log”
I have no idea what I would do in that situation. But as a fellow writer, I totally understand his need to document it. Written back in the days when blogs were still actual web-logs, what follows is a raw, human, sometimes funny, but also deeply moving account of Adrian’s journey. It starts with his diagnosis and chronicles his experience through multiple treatments (including a bone marrow transplant), and a brief period of remission.
Throughout it all, he writes.
It's been 15 years since I read his blog. I did it in one sitting — staying up until 3am clicking and reading. Clicking and reading. There was something about the way he wrote: the honesty, the hope, the humour, the hurt, the defiance… Adrian’s voice is one that really stuck with me.
The beginning of the end
In May 2008, Adrian found out his cancer had returned. He made the decision to forgo any further treatment. He wanted to make the time he had left count. How?
By breaking down the stigma surrounding stem cell donation and encouraging more young people to register as donors.
“I have one last little mission before I die. I am determined to try and educate more people about what it is like to be a bone marrow donor. There are still 7,000* people - children and adults in the UK alone — who are waiting to find a match. Without your help they have no hope.
At least I was given a chance.”
Adrian Sudbury, Baldy’s Blog: A plea for more bone marrow donors
* Current data shows that around 2,000 people in the UK need a stem cell transplant each year.
The difference one voice can make
It didn’t take long for word to spread. Within weeks of the campaign going live, “Sudders” found himself in front of the then Prime Minister, Gordon Brown, on Sky News, Al Jazeera, and even in Prince Charles’ prayers. Yes, really! Not bad, for a 26-year-old bald guy.
The problem, as Adrian saw it, is that stem cell (often called bone marrow donation) has a bit of a bad rep. It stems from misconceptions around the process. I don’t think I’m the only one who thought being a donor involved a long needle, a lot of pain, and a lengthy hospital stay while stem cells were sucked out of my hip bone.
No, I didn’t want to sign up.
But as with so many things, the reality is a little different.
What is stem cell donation and how does it work?
As it says on the tin, stem cell donation is a term used to describe the process of donating stem cells. You’ll note, I don’t say “bone marrow”. That’s because stem cells can also be harvested from blood and the umbilical cord. Essentially, they are an “immature” cell that divides and develops into different types of specialised cells — depending on what the body needs at the time. This makes them an important tool for the treatment of blood cancers and blood disorders, with transplants used to replace damaged cells with healthy ones.
For some people, like Adrian, it is their only chance.
Contrary to popular belief, stem cell donation doesn’t always mean a stay in hospital. In fact, 90% of the time, stem cells are collected through a donor’s blood in a process called peripheral blood stem cell donation (or PBSC if you want to use the lingo). Before you donate, you’ll receive a short course of injections to increase the number of stem cells in your blood. These are collected in a way that’s not dissimilar to giving blood, and takes between 4-5 hours.
In the other 10% of cases, stem cells are collected directly from the bone marrow. These are “harvested” from your hip while you’re under general anaesthetic – and generally requires a two-day stay in hospital.
I’m on the register, will you think about it too?
Neither procedure is to be taken lightly. But for me, once I knew more about PBSC and what donating typically meant, the decision was easy.
So was the registration process.
To register you must be aged between 16-30, and you’ll stay on the register until you’re 61. I did mine through Anthony Nolan, but you can also register through the British Bone Marrow Registry and DKMS. All I had to do was fill out an online form, then they sent me a test kit — which is basically a cheek swab. I posted my swab back, and now all I have to do is keep my contact details up-to-date and get on with my life.
I may never get “the call”. But if I do, I know I’ll be ready to donate. Every 14 minutes someone in the UK is diagnosed with blood cancer. Maybe it’s selfish of me, but I would be proud to be the person that helped give them a chance.
A legacy that lives on
Adrian passed away in August 2008. He never got to see his legacy live out, but I’ve done a little research, and I was pleased to find that Anthony Nolan’s pilot Education Programme (Register and Be a Lifesaver) was one of the results.
This work continues through the Adrian Sudbury Schools’ Education Trust (ASSET), as well as Anthony Nolan’s Hero Project — which credits their education programme to non-other than “Baldy” himself.
“Adrian Sudbury was the driving force for education at Anthony Nolan and his legacy continues in both ASSET through R&Be and The Hero Project. Adrian’s vision has already resulted in young people going on to donate their stem cells and give hope to patients in need of transplants.”
Final thoughts and reflections
I came across Adrian’s story, not by chance, but because of a personal, family connection. It was a story that resonated with me deeply then, and as I read back over his posts to develop this piece, I find his words just as powerful now.
It is the humanity in his voice. The honesty, humour and personality — combined with a sheer determination to make his time count, that cut through the noise and made Baldy’s Blog one to remember.
“Why did he command such attention? Was it just because of his terrible illness? NO. I believe it was because of his bravery in devoting the rest his life to helping others.”
Liam McNeilis, Baldy’s Blog: Adrian Sudbury – true celebrity
Do you want to find out more about stem cell donation?
Remember, being a stem cell donor isn’t nearly as scary as you might think. Check out the Anthony Nolan website for more information.
“None of us choose when we are going to die but it is something that will happen to us all. So let me ask you this.
What would you do if you were in my position?”
Adrian Sudbury, Baldy’s Blog: Blaze of Glory
This blog is inspired by the story and legacy of the Adrian Sudbury. May your work and legacy always live on.
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