I was diagnosed with Myelodysplastic Syndrome, a rare form of bone marrow failure normally seen in patients over sixty, straight off the back of a whimsical blood test last year. I asked for one at my GPs because I was getting out of breath just getting in and out of the shower and walking to my village shop for chocolate. I was desperate for some answers to confirm I wasn’t just a lazy student but, I think you’ll agree, the ones I got were more extreme than anything I could’ve expected.
I was immediately told that I’d have to have a bone marrow transplant, that my disease posed a risk of developing into Acute Myeloid Leukaemia, and that I had to start taking my health seriously, something I am not accustomed to at all. I’ve loved beige-coloured foods and Netflix marathons over avocado smoothies and jogging my whole short life, and somehow managed to stay healthy enough to never have a sick day off school.
It’s safe to say that last summer was a difficult one. My world was suddenly thrown into a turmoil of endless blood tests, transfusions, projectile vomiting, cancelled holidays, and – scariest of all, fertility treatment; the chemo and transplant I was preparing to have at some point within the next year would leave me infertile. Suddenly, I was having to make important decisions about my future whilst simultaneously moving back into my childhood bedroom and being carted around everywhere by my mother.
Miraculously, however, my initially scary-looking MDS seemed to stabilise over the following months, and I was allowed to return to Cardiff University to complete the final year of my degree, with the transplant comfortably postponed until the following summer. Despite trips to and from a new hospital in Cardiff on my own, and remaining a lot more conscious of my dips in energy, I was able to keep up a pretty successful double life as a student/patient. I banded the ‘cancer card’ around often enough to my friends, but it was more to get out of doing the cleaning or to stay under my duvet when I was too tired for a night out. In reality, my disease remained so stable that any fears of leukaemia were long gone.
"My world was suddenly thrown into a turmoil of endless blood tests, transfusions, projectile vomiting, cancelled holidays, and – scariest of all, fertility treatment".
But, as I should’ve known before, things rarely work out as you expect in the medical world. I was diagnosed with Acute Myeloid Leukaemia after months of good blood results when a doctor noticed a strange spike in my white blood cells at a routine blood test. This led to an emergency bone marrow biopsy which confirmed what I had managed to put off thinking about this whole time.
Overall, my doctors and family have treated me with a lot of caution over how I have reacted to my diagnosis; as if I’m a bomb that could go off at any moment. This is because I’ve surprised even myself by taking it all in my stride, something I could never have expected as I’m a massive worrier. But, it turns out, I seem to worry about the menial things more than the big, life-threatening C-word. I could count on one hand the amount of times I’ve cried and moped over my diagnosis, moving away from my uni friends and losing my hair, but have been known to react with horror and fury at the thought of getting a Hickman line inserted into my chest, a simple and necessary part of treatment, or put on a pout at the thought of not getting to return to my favourite chip shop in Cardiff.
That said, it hasn’t all been easy to adjust to. Although I’m totally comfortable with being bald now, being advised to moisturise my bare scalp will never not be weird. The restlessness that has come with the long hospital stays has perhaps been the hardest change. But I was also utterly bemused by the sudden new world of low blood counts, chemo and caution. What did they mean I couldn’t have a takeaway or eat smoked salmon? Why did I have to peel my fruit? Why couldn’t I go into busy places? My cancer seems to have strangely coincided with significant calendar dates too. I was first admitted to hospital shortly after my 20th birthday. Then my boyfriend and I spent Valentine’s Day packing for my upcoming three week hospital stay for my first round of chemotherapy. Four days before, I’d been planning a wild Friday night out with my housemates which I would never get to attend. I started to experience a serious case of ‘blocked nose syndrome’, which has never really left me since.
I’ve kept my outlook as positive as possible though, helped obviously by my incredible (and hugely varied) haematology team, and the family and friends who have gone out of their way to fundraise for charities that support blood cancer. I blog about my condition a lot too, which I’ve found therapeutic and a great way to connect with other patients.
Luckily, it seemed my body was reacting to my chemo positively too, as I only had mild side effects during my first round. But when the next calendar date rolled around, April Fools’ Day, as irony would have it, I was told that the chemo had had no effect. I was in a minority of about 15% of patients with this problem. I then entered a more intense, gruelling course that month which left me with burning fevers and even hallucinations. It’s easy to joke about my zombie-like state in hindsight, but at the time, having to be held down by nurses, and sobbing uncontrollably while I thrashed around during an iced sponge bath at 5am was the hardest thing I’ve ever experienced. Forget appreciating the mundane things in life, by the end I felt lucky just to get to the toilet without help.
My best friend’s birthday came around, something I could only celebrate with her over Skype thanks to my lack of immune system, and, lo and behold, more bad news arrived alongside it. I’ve never seen my consultant look as genuinely agitated and upset as he did when he told me that this incredibly aggressive round of chemo hadn’t worked, either. My AML was still rampaging through my body and seemed hell bent on ripping my good prognosis and year-long recovery time into something that was going to hit me a lot harder than I expected. Suddenly, we were talking new, experimental chemo that half the doctors on the ward had never seen or used before, a rush into a transplant that had previously been scheduled for later this summer, and, most surreal of all, scary statistics about long term survival.
" I wouldn’t recommend discovering that you might die right before your 21st birthday, but, as I said, I’ve spent most of my time looking for the positives, and I’m not about to stop."
I had never, not once, assumed that this disease could kill me. I knew there were an abundance of treatment options, that AML is one of the more well-known, predictable blood cancers, that my MDS would be combatted by a transplant, and that science could give me a new genetic make-up that would take me back to being a carb-loving young adult who enjoyed the simple things in life. Death had not once crossed my mind. And now it had to. Even my doctor looked like he wasn’t quite sure what he was saying.
My risk of relapse following my transplant currently stands at about 75%, which isn’t great. There will be more long term plans set in place, I’m sure, for when, if, it happens. But, as with everything else so far, there is a very great chance that they may not work. I wouldn’t recommend discovering that you might die right before your 21st birthday, but, as I said, I’ve spent most of my time looking for the positives, and I’m not about to stop. As I write this, I’m three days post-transplant, filled with the cells of a kind stranger who donated his time and stem cells to me, and I’m still thinking short term. It’s easier to get scared if you think of the bigger picture, and, as I said, I’ve been more scared of the smaller things throughout this process than I have of the big. I hate missing out on my graduation, I still hate being prodded with needles and losing whole days to staring at the ceiling of my hospital room, but if I die in the next five years, as I well might, I want to do so having feared nothing more severe than that. I’m lucky enough to have an incredible team who can do the planning for me, who constantly reassure me that that outcome is what they’re trying to avoid, and I’ve got a pretty brave family who do all the worrying for me.
I’ve got a lot to come first, though. At least another month in hospital, a feeding tube to be inserted so that I can get out of forcing down hospital food in favour of beige, processed liquid (I’m still not sure which is preferable), and a decent shot at recovery. And I’ll be keeping my bald, emollient-smothered head turned as far away from the worst outcome as possible.
You can follow me doing this at www.alicebyron.com.