Cancer is something that happens to other people. That’s what I always assumed, without really thinking about it. No one ever imagines it will be them. Especially not when you're a healthy 22 year-old, like I was, at the beginning of 2013, when I came down with a bad case of flu.
Sore throat, swollen glands, tiredness, aches and pains – the usual symptoms. I didn't worry much at first – I had no reason to think it wouldn't go away, like every other flu or virus I'd had.
But I seemed to be getting worse, even after two courses of antibiotics. I had high fevers. I went to the doctor’s surgery four times. 'Get some rest,' they kept telling me. By this stage I was unable to do much else – I was so weak I found it hard to walk. I felt breathless and dizzy standing up.
Eventually, a GP told me to have a blood test in A&E. After some more tests, I was diagnosed with leukaemia in February 2013 – acute lymphoblastic leukaemia. I was immediately transferred to a haematology ward at another hospital and I started chemotherapy the following day. There was no time to waste. Acute leukaemias kill quickly if left untreated.
'A stem cell transplant was the only option'
A few weeks into my treatment, after further tests, my doctors discovered that I had a rare cytogenetic abnormality – one of my chromosomes made too many copies of a certain gene, which weakened my survival chances.
My consultant told me that a stem cell transplant was the only option. Trying to cure me with chemo alone would be too much of a risk; I was likely to relapse, and my leukaemia would return, more aggressive and less treatable. I would need high-dose chemo and total body irradiation, to kill off every trace of cancer cells, and then a hefty dose of someone else's stem cells, to get on with the leukaemia-fighting work that my own bone marrow had failed to do.
But first I needed a donor. My sister had already been tested at this stage, and found to be incompatible with my tissue type, so the search was on to find an unrelated donor through Anthony Nolan's register.There was no guarantee that a match would be found, especially, I was told, with my 'mixed' background. (My mum is Croatian and my dad is Jewish-Hungarian.)
The wait for a donor was agonising. After so much bad luck, I didn't dare get my hopes up. I felt like everything I knew was crumbling. I'd always imagined I could rely on the NHS to help me, no matter what. But if I didn't find a donor, I could be dead within a few months, or weeks. No doctor or wonder drug could save me.
'Nothing could have prepared me for the reality of transplant'
I'll never forget the day that a doctor came into my hospital room and told me a donor had been found – a young man, 24 years old. Just a year older than me. It is thanks to him that I am here now, writing this.
The transplant itself was intensely gruelling. I was warned about the potentially devastating side effects. I was told that there was a 10-12% chance the treatment itself would kill me. But nothing could have prepared me for the brutal reality.
I developed pneumonia, infections, liver failure and acute Graft-versus Host Disease (GvHD), where the donor's cells recognise the recipient's as foreign and mount their attack, leading in my case to severe vomiting and skin rashes. But the worst was mucositis – the inflammation of the mouth and the digestive tract. I could not speak or eat for several weeks. I was constantly spitting out blood. I was on a 24-hour morphine drip for the pain. At the time, I didn't think I would survive.
'So much more needs to be done'
My recovery has been slow, and there have been numerous hurdles along the way – not only with my health, but also with a healthcare system that doesn't seem to have the right infrastructure in place to deal with post-transplant patients like me.
In the long-term, most of us experience weakened immunity and various complications. There have even been a few occasions when, suffering from debilitating infections, I have had to pay for private consultations with my own savings to get urgent treatment.
Two years on, I am starting to get back to some semblance of normality. I am still having long-term hospital treatment for chronic skin GvHD for two days a month. But I am alive. I am one of the lucky ones.
More than 400 patients a year are unable to have the transplant they need, simply because a match is never found. 1 in 3 stem cell patients die in the first year after their transplant.
That is why I am supporting Destination Cure. So much more needs to be done to improve long-term survival outcomes and as quality of life. With Anthony Nolan, I am urging the government to provide more investment in medical research and in better post-transplant care. Cancer isn’t just something that happens to other people. It could be you.
It could be your mum or dad, your workmate or your best friend whose nasty flu turns out to be something nastier. No one should have to die simply because a matching donor cannot be found for them. You could be that perfect match for someone out there. If you’re 16–30 years old and in good health, you can sign up to be a donor today. All you need to do is spit in a tube. Do it. Show that you give a spit.
Hannah Partos is a freelance journalist who had a stem cell transplant in 2013. Follow her on Twitter @hannahhh
Ask your MP to support our Destination Cure campaign at www.anthonynolan.org/destinationcure
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