words by Julia Reinstein, Staff Writer
When I was in my first year of university, I was diagnosed with Acute Myeloid Leukaemia (AML). Within the space of 3 hours, some unexplained bruises and a resting heart rate of 120bpm stopped my university life in its tracks. My first thoughts went something along the lines of “what the hell is leukaemia?” and “am I going to die?”, questions that no 18 year old ever expects to be asking. Having recently decided I wanted to be a doctor, I realised I would be getting the best – and possibly worst – ‘work experience’; a harsh immersion into the world of medicine.
AML is a blood cancer which has an average age onset of around 60, with a handful of annual diagnoses being in my age group. After some genetic analysis on my AML, I was told I needed a stem cell transplant to save my life; the chemotherapy alone wouldn’t be enough to keep me in remission. I was shocked that neither of my brothers were a match for me, and even more shocked to find out that the probability of any sibling being a match is only 25%. I was told that I would need a match from an unrelated anonymous donor, and the search began. Simply put, my donor and I’s DNA should align on 10 criteria to give my body the best chances of accepting the donated stem cells, although matches as low as 8/10 are still considered acceptable.
Anthony Nolan is the UK based charity which coordinates the stem cell transplants, but it doesn’t necessarily mean that someone who needs a transplant will have a donor from the UK. Different countries’ registers communicate between their databases, so donors can donate to virtually anywhere in the world. Although it took around 2.5 months to find me a 9/10 match, I was considered lucky given my caucasian, european background; 72% of people with my background find a match, whereas only 37% of those from a minority ethnic background do.
I am embarrassed to admit that I, nor my medical parents, had heard of Anthony Nolan before I was diagnosed. In fact, only 2% of the UK population is signed up to the register, a shockingly low number.
After 3 months of exchanging cancer memes with my friends and forcing my family to endure head-egg comparisons, transplant day came. People wished me luck for my big operation, and I explained that it wasn’t actually an operation at all. After I had showered and put on my best headscarf, two specialist nurses came in with a reddish bag of pure donated stem cells, the size of a cornish pasty. I’ll admit that I was disappointed they weren’t glowing radioactive green. The nurses put a cannula into the back of my hand, and let the stem cells enter my veins via gravity. There was no anaesthetic or fireworks, and after a very underwhelming hour and half the nurses removed my cannula and congratulated me on a second birthday for my new immune system. I stared blankly at them, wide-eyed and slightly confused, and they explained that in about 10 days the cells would take hold of my hollowed-out bone marrow and start making the good stuff. With the worst behind me, I slept a lot and waited for the graft to magically find its way into its new home. I remember being woken up in the middle of the night for an ‘obs’ check, and my night-nurse excitedly telling me that my bloods had come back, “Julia! Your neuts are up, it’s worked!”. I mumbled something about being relieved and fell back asleep, not fully realising what I had been gifted.
The nurses and doctors who cared for me created such a positive atmosphere, that I never really ‘faced death’ in the way some might expect. They were overjoyed at the news that my graft had taken, and soon after that I was discharged for a lengthy 6 month recovery before returning to university to finish my degree.
There are some things about getting cancer that everyone expects, like losing your hair and being nauseous for most of the day, but some that took everyone by surprise. Your bone marrow makes all of your blood products, like red blood cells, white blood cells, and platelets, and forms an integral part of your immune system. My stem cell transplant essentially gave me a new blood system, meaning that I needed all of my childhood vaccinations redone. The best fun fact though, is that the blood coursing through my veins actually has my donor’s DNA, not mine, and even has my donor’s blood type. I decided against committing a crime and leaving my donor’s blood at the scene, but have considered pitching a storyline to Criminal Minds or CSI Miami (or has that already been done…?). I don’t often think of the fact that part of me is actually someone else, but when I do I am reminded of how lucky I was to have a) found a match on the register, and b) have had a match who volunteered to save my life. I have surpassed the required 2 year anonymity period between donors and recipients that Anthony Nolan requires, but every “thank you” I can think of saying to my donor seems inadequately simple. How could I possibly put into words how grateful I, my family and friends are for what they have done for me? It’s an insurmountable task.
Fast-forward to the current day, and I am months away from having finished my degree, and going on to a career in medicine. I still have occasional follow-up consultations with my doctors, but it’s all routine. If you met me now, you wouldn’t know that I had AML, unless you knew to look for a tiny sesame seed-sized scar on the inside of my arm where my PICC line had been. It simultaneously feels like a lifetime ago, but if I think back to the curtain-drawn A&E cubicle where I was diagnosed, it could have been yesterday, and all those same emotions rush back to make me well up. While I can’t myself donate stem cells, I can encourage others to sign up to the register. Being on the register doesn’t mean you will definitely donate, but it does mean that the chances of finding a match for someone else are increased. It’s completely free to sign up, only requires a few cheek swabs, and you might eventually be invited to someone’s second birthday party.
The link to sign up to the Anthony Nolan register is at www.anthonynolan.org.