Year of Wellbeing Blog: Simon's story - part two

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 two

This blog is part two of my cancer journey, which has taken me from diagnosis to preparing and competing in the London Marathon and for Team GB.

A Possible Match

In early October 2011, good news arrived for my cancer treatment, yet it was tainted. A possible match via the Anthony Nolan database of potential donors had been found, but the man didn’t come forward because of work commitments. By now I was getting desperate and my health was deteriorating fast. Later that year they found a possible match in Germany, we hoped he could commit and was a suitable match. “10/10 is the ideal” and yet his 9/10 was right up there and tears of joy flowed. There is a chance!

January 18, was D-Day. The blood arrived. It took over 10 hours to enter my body. A new lease of life had been given but how would we know if it would take? Day 10 passed and nothing was happening. The consultants and nurses were hopeful but it wasn’t to be. I was told I needed to see the expert on Aplastic Anaemia, Professor Judith Marsh at King’s Hospital London. I would have gone anywhere if it was going to give me a chance of beating this.

My chances of survival were less than 60% because I was having a second bone marrow transplant and my body had deteriorated significantly. I just wanted an end to it and for the procedure to start.

 

Making a Recovery

Finally Tuesday, July 31 2012, I arrived home. A battered and tired warrior with a mountain of medicines. With no immune system and my body completely shot, any public space or social gathering or air-conditioned places were strictly off limits.

Walking was just about doable, food pretty intolerable and any lunges were frankly impossible. As time passed, my local hospital in Warwick came to my rescue. An amazing lady called Carole Connor leads the Aylesford Cancer Unit. What a wonderful team of Angels and Trojans. They work tirelessly with such professionalism and never complain.

I yearned to walk and longed for fresh air and a bit of company and people. A bit of laughter and a sense of purpose emerged. They call it the Parkrun and it’s every Saturday at Newbold Common in Leamington Spa. Off I went. Not to take part but just to see and maybe, help out. What a delight. I had found my place. Outside, people, positive and wanting to make a difference and no sense of judgement. I could blend in, do as little or as much as I like and be almost normal. I was starting to find a sense of purpose. Saturday morning is my calling, I thought.

What soon followed was a chance meeting on a routine appointment visit to King’s College Hospital that changed my life. A consultant said that I needed to eat four times nutritionally dense food that my body was crying out to be nourished. Food is our weapon and my best medicine and I need to find a way to do what he had instructed me to do.

My desire to get off the drugs and supplement my body with the very best food was stronger than ever. I added extracts of raw, ripened fruits, vegetables and berries to my diet. I became stronger and walking turned into jogging and jogging became running. Parkrun runs became faster and faster and then in March 2014, the Warwick Half Marathon, less than two years post-transplant and chemotherapy.

 

London Marathon 2014

“Surely not?”

I wanted to give something back and this would mean everything to me. Thanking Anthony Nolan, the wonderful NHS nurses and consultants, my very kind donor, my family and friends and to promote blood, stem cell and organ donation.

Three people every day die every day in the UK because they can’t find a match and there are approximately 6,000 patients and families desperately waiting for that phone call to give that same second chance of life.

What a joyous day of emotions the London Marathon was. It was toil and sweat, turmoil and yet it was all worth it. Seeing and hearing those crowds pulled me along and brought it all back. I felt free again and almost like an Ironman! Finishing in 3 hours 31 minutes, I was exhausted but elated. Now what? I thought. Crikey, I need to get working, earn some money and make a contribution. My calling was there and Parkrun became a part of that new me. I love helping out and being part of this local community.

I started to find a love in helping others, which was helping me come to terms with what I had been through. Is it really a form of posttraumatic stress going through a transplant? Some experts say there are many similarities and many people feel alone. Some excellent resources and support are there such as MacMillan nurses, yet more needs to be done and I want to change this.

Out of the darkness came the light, when in 2015, I came off all the medication. Some may say I was foolish yet the voices in my head were telling me: “This is the only way to go if you want to beat cancer and give yourself the very best chance of it not coming back.” I weaned myself off all medication with the health professionals fully aware. I would not advocate making any such decisions without discussing it with your consultant and GP, but it felt right for me.

More sport came back into my life and my energy levels continued to soar. Infections and colds became a thing of the past. I believe rest, sleep and good wholefood nutrition are my secret weapons. The British Transplant games, then the World and then the European Games came. Was this really happening to me? How can it be? Is this for real? Now I am a British and European Champion in 5,000m, 1,500m and 800m and am now heading for the World Games again in August 2019.

 

Year of Wellbeing

I am grateful to have come through my experience, and to have beaten cancer. Every single day is a bonus for me. I do not see obstacles, only opportunities. I am proud to actively promote blood, stem cell and organ donation as a Health Champion. My business is all about inspiring people to live a healthier life and for them to enjoy every moment.

I am now excited for the Year of Wellbeing in Coventry and Warwickshire. If by reading this blog, I am able to reach out to just one person who is suffering or in pain to improve their day, it has all been worth it. I feel completely free, love life and am so grateful.

Feel free to contact me via Facebook (I run a Facebook group called Get Fit Warwick (GFW), Twitter @perkinsimon and Instagram – if I can help you, I will.

 

Read an update on 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.

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