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It’s quite rare for young person to be diagnosed with a myelodysplastic syndrome (MDS). But this happened to Sam Smylie when he was 17. Here, he tells us his story and how, despite his diagnosis, he intends to live life to the full.
The best way to tell a story is to start from the beginning. It all started in 2006 when I was 17 years old. I was a fresher and I had just completed my first month at the University of Paisley (now the University of the West of Scotland), where I was studying Mathematical Sciences. I was ambitious, confident, young, fit and passionate about life; yet still naïve enough to think nothing would ever go wrong.
I’d seen an advert about donating blood for blood transfusions. I remember it saying that a newborn baby only requires a spoonful of blood to stay alive. This was enough for me to turn back and walk into the blood donation clinic. I was greeted by an over-enthusiastic nurse who escorted me into a booth where I was told to wait. She pricked my finger and dropped a little amount of blood into a vial of green-blue liquid. After a few seconds of looking confused, the nurse repeated the test again with the same result.
Within a week, I was in a bed at Glasgow Royal Infirmary, with haematologists scratching their heads about why I was apparently so anaemic. I was fit, healthy and didn’t feel unwell in the slightest. Yet after countless blood tests and a non-conclusive bone marrow biopsy I was released back into the world again, with a regime of follow-up appointments.
After years of attending haematology appointments, hospitalisations for viral infections and struggling through university, in 2013 I suddenly became very ill, very quickly. I woke up one morning in a slight panic as I realised one side of my face was covered in blood and that my whole pillow was stained red; I noticed that the blood was coming from my nose. Severe bruising started to develop around my body and I became extremely pale. I found it hard to walk and struggled to climb a flight of stairs; I had to take a break after a few steps. The fatigue was unbearable. I was forced to go and see my GP by a close friend, who has been a shining light throughout my whole journey.
So there I was, back at Glasgow Royal Infirmary. My consultant gave me the news; a bone marrow transplant was the only option as my bone marrow had completely failed. I wasn’t too worried, I knew I was ill but if it could be fixed, then I was optimistic.
I received red cell transfusions at the Haemophilia and Thrombosis Centre at Glasgow Royal Infirmary. During this time it had dawned on me that the tables had turned from when I was that young man walking into give blood, I was now the one in need. I started to wonder if I would ever live a normal life; if I would get the opportunity to spend time with a loved one, or to go see a movie without being too tired.
From the last bone marrow biopsy (by this time I had had four, and it wasn’t the last), the news came. I was finally diagnosed with hypoplastic MDS. I sat there alone. I switched off. I didn’t hear anything for a while until I phoned my sister in tears telling her I had cancer. I went home and broke the news to my mum, which was harder than I could have ever imagined. I may have had two - three years to live if treatment wasn’t started quickly.
On my 25th birthday I lay there bald and in isolation, experiencing constant sickness and diarrhoea. I couldn’t talk, walk or eat and I spent most of the days in tears. I was at the lowest point of my life and I pleaded for relief. The realisation of how lucky I was came when I found out that my sister would be donating her stem cells for my transplant. It was the most precious gift she could have given me, she was a perfect match. For a long time, I struggled. I went to bed each night worrying that I might not make it through to the morning and I hated people leaving me when they came to visit.
But things started to improve. So much so, the nurses were stunned at how much I came round. One morning I got out of bed, tidied myself up and took it from there. I still couldn’t eat but I was getting better, and, after four weeks I was out of isolation and heading home. I was still very weak and experiencing some side effects of treatment but I was improving and I could finally see light at the end of the tunnel. Now, eight months on, I am still doing well. I am a postgraduate student at the same University where I began my journey. I have completed an internship with a leading third sector organisation and have raised over £1,500 for cancer charities. “I am alive, I have a chance to live for many years to come, and that’s exactly what I am going to do!”