Year of Wellbeing Blog: Simon's story - part one
1 February 2019
Everyone has their own story to share about ways they have found to care for their own wellbeing, and the wellbeing of other people.
A team of bloggers have agreed to describe their personal journey. We hope their stories help and inspire others during our Year of Wellbeing.
Simon's story - part one
My Diagnosis
When they told me: “You’ve got Cancer,” my world fell apart and I thought: ‘What can I do?’ Do you accept your fate or is it maybe ‘do or die’? I was determined to not let this diagnosis define me.
That’s exactly how I felt when I was first given the awful news that I had Aplastic Anaemia, a rare form of blood cancer, back in 1991, aged 26. It completely took the wind out of my sails. Is this how it is supposed to be? My head was spinning all over the place. Here I am, young, free and single and wanting to take on the world yet it felt like the world was saying to me loud and clear to me: ‘Do you know what, you are dead and buried, mate!’
That news made me feel angry…’why me? It’s not fair!’ I felt I was about to launch into the unknown, and boy didn’t I just? It was like falling through space without anything to grab hold of. Check up after check up with health professionals, appointments, and hospital visits and my life took a completely different turn. Where would it end? I thought.
Many dark days followed which turned into weeks, months and many years.
My cancer journey had started back in Manchester when I went to give blood for the second time. Already feeling low and wondering why my head was pounding, the nurse informed me after testing a sample of my blood, I was anaemic and I should see my GP in the next 24 hours. I just wanted to give blood, do my bit and get straight back to work. Little did I realise that that little act of giving blood had probably saved my life.
Months followed of investigation after investigation. Was it simply an iron deficiency? No! Was it a B12 deficiency? No! What could it be? “Pack your bags Mr Perkin, you are going to Manchester Royal Infirmary Hospital and you could be in for a long time,” I was told.
Trapped in the sterile isolation unit, I felt no one was listening. The exploratory tests continued. AIDS was ruled out to my relief but maybe it could have been this, I thought. As he looked into my eyes, Dr Colin Geary told me: “I’m afraid it’s bad news. It’s a one in a million chance and the odds are not good for you. I am awfully sorry to inform you have been diagnosed with a very rare form of Leukaemia, known as Aplastic Anaemia.” My initial reaction was slow and one of silence. I was shocked.
The only cure was a bone marrow transplant. Sadly my brother, my only sibling, wasn’t a match. My head was pounding like a heavy weight weighing down on my brain. Countless blood transfusions followed. Sleepless nights, sickness, vomiting, shivers, diarrhoea, shakes all followed day after day. I felt helpless, vulnerable and alone. Nothing I could do would make a difference. Only the medics knew what they were doing. I was completely in their hands and I felt confident they knew what they were doing and I followed their lead.
Eight weeks passed, I had survived and it was time to go home. The journey was one I will never forget. It finally dawned on me that if I was going to get better, it was me and me alone and nobody else was going to do this for me. I needed to take charge, make some radical changes and thought: ‘This is now or never’.
Making a Change
Those early days helped transform the way I lead my life. Maybe because I have always known deep down and carried it with me for all those years that a bone marrow transplant was the only cure. But this was just not possible, right?
This propelled me into studying nutrition and fitness. I was like a sponge and a hungry student. What do Olympic athletes eat and drink? How do they train? Don’t be so silly the voices were telling me: “You have Leukaemia.”
Little by little and step by step, I was getting stronger but still the setbacks came at me. More admissions to hospital and infections. Not another eight weeks, I’m thinking. I can’t do this! As anyone knows who has been on this journey, there is no let up.
June 2011 was a defining moment in my life. Things had changed and the science has moved on. “We are amazed you are still with us, Simon”, my consultant told me. “Most people with aplastic anaemia would have died by now. What’s your secret?”
“I try my best to eat well and have become almost obsessed with studying nutrition because I feel it can help my recovery,” I replied. I was expecting him to respond but no response was given. “I believe your best chance is to have a bone marrow transplant, because you will soon be needing more blood transfusions and not likely to live more than five years at best. There is a chance that if it works, you may live pretty much a normal life but the procedure comes with many risks.” ‘What is normal?’ I thought to myself, not daring to ask any questions.
My life was very much on hold again. Full of uncertainty and despair yet a small glimmer of hope beckoned. Could a match be found? What if…
This blog is part one of my cancer journey, which has taken me from diagnosis to preparing and competing in the London Marathon and for Team GB.
Read part two of Simon's story here.
About the author
Simon Perkin is a Cancer survivor who lives in Warwick with his wife and teenage son. Simon is currently training for the World Transplant Games in August 2019. He runs a health and nutrition business and is on a mission to inspire healthy living and actively promotes good health, blood, stem cell and organ donation.
Click here to find out more about Coventry and Warwickshire's Year of Wellbeing 2019.
