Will was 25 years old when he was diagnosed with acute lymphoblastic leukaemia (ALL). He has one sibling, George, who turned out to be a 10/10 match for him – and so Will was able to have a sibling transplant.
Billie in the Patient Services Team spoke to each of them to learn more about how they found the experience.
Will’s story – sibling transplant recipient
Can you tell me a bit about when you first became unwell?
It was the beginning of June 2012 when it all started. I had a chest infection that wouldn’t clear up fully after a couple of rounds of antibiotics. I also had painful shoulders that the doctor thought might be reactive arthritis. I was told to keep an eye on it and if it didn’t get better I’d go for a blood test.
There was no improvement, and so a week later I went back. Once the results of the blood test came back, there were a few anomalies and the doctor wanted me to have another. Meanwhile the shoulder pain was worse; even putting on a shirt was quite hard to do. I also woke up one day with a black eye! Which was quite a random thing to look at in the morning. My girlfriend wasn’t round that night, so no chance of an elbow in the face, and I wasn’t drunk or anything. Something was wrong.
The day after I got my second blood test results a consultant told me I had acute lymphoblastic leukaemia (ALL).
What was a sibling transplant talked about as an option for you?
It was mentioned quite early on as a back-up, as we went down the chemo route first. But my first lot of chemo didn’t quite have the results they hoped for, so then they swapped me onto the transplant route.
How many siblings do you have?
Are you close?
Yeah. We bicker a bit as he’s just two years older than me, but we are close.
Was it a strange feeling, to know that he might be the one to potentially save your life?
Not really! They tissue typed him really early on to see if he was a match, should we need to go down the transplant route, and so I found during my first chemo that he was a 10/10 match. That was a big relief, to know that base was covered.
Do you think he felt any pressure at all?
I don’t think so. If it was the other way around, I’d be like, ‘Of course, he’s my brother, no question,’ especially as it wasn’t a solid organ that wouldn’t be able to regenerate, like a liver or kidney. It’s an even easier decision – well, it is in my head, anyway!
My brother can be quite tight! (He’ll kill me for saying that) And he would sometimes go for the reduced food in Tesco’s, stocking up on lunch for the next day at a cheap rate.
I remember saying to him, ‘No dodgy prawn sandwiches that are going to make you ill and not be able to donate! Eat well and don’t do anything stupid. Wrap yourself in cotton wool for a few weeks, would you, because I need you!’
Do you feel indebted to him?
Of course; yes, yes, I do. It’s quite hard to work out. What do you get someone as a thank you who saved your life? At the time, I got some cufflinks made that say ‘I O U’ on them. So he had them as a small thank you when he woke up.
But he’s always winding me up, saying stuff like,
‘Erm, the bone marrow fancies a cup of tea, Will,’ and I’m like, ‘Yeah, yeah, OK.’
It’s more jokey banter around me owing him. I’m sure he doesn’t actually see it that way!
It’s made us a bit closer, I would say. Luckily I only have to take penicillin nowadays and have no other symptoms, so my illness is kind of in the past, and done.
Things are back to normal, which is what we all wanted.
You were lucky enough to have a sibling donor, but many don’t. Is that why you became a Young Ambassador volunteer for us?
Yes. Speaking to other people, I recognise how lucky I am to have had one donor and it be a 10/10 match.
I can’t give blood or platelets because of my previous condition, and this is a small way I can give back what was given to me. I want to raise awareness to get unrelated donors on the register and help people.
If it wasn’t for George I would have desperately needed a stranger’s help. It could have been a completely different story; I was just lucky.
Tell me a bit about your sporting achievements since your bone marrow transplant.
I think it was my godmother who said to me when I was preparing for my sibling transplant,
‘You’ll be able to take part in the Transplant Games now.’ I’d never heard of it before that.
I have a background in rowing. I rowed full-time for a year, and I was lottery-funded on the edge of the Olympics squad, but in 2009 I knew I wasn’t going to make it to Olympics 2012, so I decided to call it a day.
But that training and the way I’d got my body physiologically meant that cycling at the games was a good fit – it’s all legs and cardio!
How many medals have you won at the various transplant games?
Six gold medals at The British Transplant Games so far, two bronze at the Europeans in 2014 and two silver at the World Games in 2015.
I’ve moved up an age bracket this year, and the competition is tighter, so let’s see how I go in 2017!
I’m not going to the World Games next year. As much as I love it, it’s self-funded and so gets pretty expensive.
I’ll be at the British Games next summer though. It’s quite nice to just be around people who have had transplants. I find it quite humbling to look around and think everyone here would be dead, if it wasn’t for amazing medicine and the kindness of people donating.
People like my brother George.
George’s story – sibling donor
Can you tell me what it was like for you when Will was diagnosed?
It was a shock and a bit of a funny time. I was smack bang in the middle of my accounting exams which was very intense, and so I was mentally exhausted from that. Speaking with Will, his doctors and Mum and Dad, we were told that it would be a relatively slow process with treatment in the beginning. So I made this decision to carry on with my exams instead of having to postpone them for a year or so. I decided to get them done, then I could focus on Will.
Having your younger brother diagnosed with acute lymphoblastic leukaemia puts everything in perspective. Including the importance of my exams! Obviously I wanted to do well, but we all tend to get trapped in the bubble of our lives and think they are the most important thing in the world when there not. The exams actually helped me to cope with the shock of Will’s diagnosis, I think, as I had something to focus on. I slowly dealt it with over time, instead of all at once.
Had you ever heard of stem cell transplants before?
I had a builder working on an extension at my house that year, who rather randomly had to take a couple of days off as he was donating stem cells to a stranger. I was aware that Anthony Nolan existed but it was odd to have this connection so close in time to my brother getting blood cancer!
How did you feel when you realised you could be a match for Will? Did it make you nervous?
It all happened quite quickly – I think it was three days after Will’s diagnosis that we were talking through possible options, and they did all of the tests on me to see if I was a match just in case. I didn’t give it a second thought, when they told me it could be a potentially curative option for my brother I said, ‘Let’s do it’.
What I found hard, although I understand why they do it, was all the counselling and checking in the transplant team did making sure that I wanted to donate. They kept asking, letting me know I wasn’t under any obligation, and I found that really annoying and frustrating.
For me it didn’t feel like there was an option. My brother needed me, so of course I was going to do it, no matter what it entailed.
It was daunting at first but we were lucky, having the option with me as a match for a sibling transplant. In hindsight, it would have been much more stressful and worrying, had I not been a match and we had to wait and hope for one.
So you donated via your bone marrow – how was the donation process? Did you feel that things were explained well to you?
It was really, really straightforward. The NHS gets so much bad press and the experience we had did not reflect that one bit. The teams were brilliant and spoke to each other while looking after our individual needs – it was really well managed. Everything was explained very clearly to me.
The procedure itself, including the build-up, was so much easier mentally and physically than I had expected, based on what I had read. I was expecting it to be painful and traumatic and that it would take me ages to recover, and the reality was the complete opposite.
After just over a week I felt like, ‘Was that it?’
Was there any aspect to it that was hard?
The hardest thing for me mentally was that for Will, and all patients, there is a commitment to having a transplant where there is a point of no return. After his radiotherapy (I think it was around six days before the sibling transplant) if for any reason the transplant failed to go ahead, it would likely be fatal for him.
And there was a bit of time between that and me actually donating. I struggled with that, mentally. I’d worry about having a car crash driving to the hospital and I’d somehow miss the opportunity to donate. I worried that the whole process could fall down because of something out of our control.
I guess that is an aspect that’s different for sibling donors. You’re actually bearing witness to the chemotherapy and the radiotherapy, and all of those really difficult things a patient goes through to have a transplant. And the patient is someone close to you.
Exactly, the risk felt very real because of my relationship with Will.
So how did you feel when you came round from the general anaesthetic?
Very drowsy! It took a couple of days for that to lift. The first day I slept loads and needed lots of fluids to bring my blood pressure up. I was also given painkillers to help with the localised pain around my lumbar area.
Was your donation very painful?
No. It kind of reminded me of when I used to row with Will and we did a lot of training. Occasionally you’d lift a weight that was too heavy, and strain or pull something in your back. It felt more like that.
The second day after my donation I went down to Will’s ward to spend some time with him, and I was discharged that evening.
I spent a week at home, sleeping, eating lots of red meat and iron-rich foods, getting my energy up. Then I went back to work.
Do you think the sibling transplant has made you closer?
We’ve always been very close; although Will’s right, we do bicker! Rowing together made us friends as well as brothers. The sibling transplant was just a continuation of that.
How was Will’s recovery?
The first 30 days were hard. It looked like he was getting worse, not better. We were just waiting for the numbers to come up; the doctors told us that his side effects were to be expected and he was doing really well, but it didn’t feel like that, looking at him every day. He didn’t speak much as his mouth was so painful and he was on a morphine drip.
It was just a relief when he came off the morphine. The numbers came up and he bounced back. I started to feel more confident he would be OK again.
Did you see much of Will when he left hospital?
Yes, he moved in with me and wife for about six months. We took care of him and allowed him to rest. All his meals were taken care of, housework was done so he could sleep, and he had company the whole time. Otherwise he would have been in his flat alone. He made a steady improvement with no setbacks, which was amazing.
What do you think is the main reason people don’t sign up to be donors?
I think it’s largely due to the negative, outdated information on the internet about it being painful and a massive procedure. It isn’t, and after I recovered I thought, ‘I’d do it again next week.’ If someone else needed me, that’s fine, I’d just do it again. The worry that I had prior to donation was all unnecessary, as what I’d read wasn’t true.
When I go on my bike I wear my Anthony Nolan jersey and it gets people taking about it. I’d encourage everyone to be on the register, as so many people don’t have sibling matches.
It’s straightforward, you are well taken care of, and if you are a match for someone, the difference it makes is incredible – it saves people’s lives.
For advice and support about sibling transplants, you can consult our ‘Donating To Your Relative’ guide for patients and family members.