Words by Julia Reinstein
When I was in my first year of university, I was diagnosed with acute myeloid leukaemia (AML). Within the space of three 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, “Sh*t!” and, “What the hell is leukaemia?” and, “Am I going to die?” – questions that no 18-year-old ever expects to be asking. Having just decided I wanted to be a doctor, I realised in that moment that I would be getting the best, and possibly worst, ‘work experience’ – a harsh immersion into the world of medicine.
AML is a blood cancer with an average age onset of around 60. Only a handful of annual diagnoses are in my age group. After some genetic analysis, I was told I needed a stem cell transplant to save my life as chemotherapy alone wouldn’t be enough to keep me in remission. I learned that I would need a donor whose DNA matched mine across 10 crucial criteria to give my body the best chances of accepting replacement stem cells, though matches as low as 8/10 are still considered acceptable. I was shocked that neither of my brothers were a match, and even more shocked to learn that the probability of any sibling being a match is only 25%. So, the search for an anonymous donor began.
Anthony Nolan is the UK-based charity which coordinates stem cell transplants, but it doesn’t mean that someone who needs a transplant will have a UK donor. Different countries share their databases, so matches can pop up anywhere in the world. I was lucky to find a 9/10 match in two and a half months, thanks in part to flukes of my birth; 72% of people with my Caucasian, European background find a match, compared to only 37% of those from an ethnic minority.
The low point followed. In two devastating rounds, doctors bombarded me with chemotherapy that killed the cancer and cleaned out my misfiring bone marrow, leaving me bald, somewhat shattered and, literally, hollowed out in readiness for the stem cell replacement. Then, after three months of exchanging cancer memes with friends and enduring head-egg comparisons from family, transplant day came.
People wished me luck for my big operation, but it wasn’t an operation at all. Rather, after I showered and donned my best headscarf, two specialist nurses came in with a reddish bag the size of a Cornish pasty containing pure donated stem cells (I was disappointed they weren’t glowing radioactive green). One of the nurses hung the bag on a stand, while the other connected it to a cannula poked into the back of my hand, and then they let the stem cells drip into my vein. No anaesthetic, no fireworks. After an underwhelming 90 minutes, they removed the cannula and congratulated me on a second ‘birthday’ for me, a first birthday for my new immune system. I stared – wide-eyed and confused – while they explained that, in about 10 days, the stem cells would find their way into my hollowed-out bones, settle in as bone marrow, and start making the good stuff.
With the worst behind me, I slept and waited for the donated cells to work their magic. I remember being woken in the middle of the night for an “obs check” – an observation – and the night-nurse excitedly telling me that my bloods had come back: “Julia! Your neuts are up! It’s worked!” Barely conscious of the usefulness of neutrophils (an essential type of white blood cell), I mumbled something about being relieved and fell back asleep, not fully realising what I had just been gifted.
My team was thrilled that the graft had taken, but they had always maintained such a positive atmosphere that I never really ‘faced death’ in the way some might expect. It all seemed to follow as it should: diagnosis, treatment, six-month of recovery, and then back to university to finish my degree.
There are some things about getting cancer that everyone expects, like losing your hair and being nauseous day in and day out, but some things took everyone by surprise. Your bone marrow makes all of your blood products (red blood cells, white blood cells, platelets, etc.) and forms an integral part of your immune system. My stem cell transplant completely renewed my blood system, meaning that I needed all of my childhood vaccinations redone. The best fun fact is that the blood now coursing through my veins has my donor’s blood type – and his DNA! I have no intention of committing a crime and leaving my donor’s blood at the scene, but I am thinking about pitching a storyline to Criminal Minds or CSI Miami. I don’t often think about part of me now being someone else, but when I do, I am reminded of how lucky I am: a) that this world-wide donor register exists, and; b) that I found a match – a total stranger who volunteered to save my life.
When I passed the two-year anonymity period that Anthony Nolan requires between donors and recipients, I found that every version of “thank you” seemed inadequately simple. But after exchanging a few letters with my donor, I realised that the specific words didn’t matter. The general messages were ones of catharsis and rooted familiarity. Whoever you are, I couldn’t have done it without you…!
I have now graduated with a degree in Neuroscience, and have tucked my medical school acceptance letter away to enjoy a proper gap year. I still have 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 sesame seed-sized scar on the inside of my arm where my PICC line used to be. It feels like a lifetime ago, though if I think back to the curtained-drawn A&E cubicle where I was diagnosed, I well up with all the same emotions. It could be yesterday.
Now, I am embarrassed to admit that before I was diagnosed, neither I nor my medical-professional parents had heard of Anthony Nolan. Even so, I find it stunning that only 2% of the UK population is signed up to the register.
So, while I can’t donate stem cells myself, I can encourage others to sign up. Being on the register doesn’t mean you will definitely donate, but volunteering is free, it’s easy (they just take a couple of cheek swabs), and, should a match arise, it means that you might one day be the guest of honour at someone’s second birthday party.
The link to sign up to the Anthony Nolan register is: www.anthonynolan.org.
Featured Image Courtesy of NCSA (https://www.ncsa.illinois.edu/ncsa-project-expands-toolbox-for-understanding-cancer-evolution/)