Struggling With A New Life

Running this blog has given me more positives than I could ever have imagined. ‘Meeting’ other people who are affected by cancer is certainly one. Being able to share their very personal stories to enable us all to learn is another. It is always interesting to see the different ways that we deal with our disease and follow on issues. Some people find religion, others totally change their lifestyles as they re-evaluate what is important to them. In this instance, Simon looked in detail at his diet. It affected me in reverse and I gave up looking at what I ate, to try and maximise my enjoyment from food! But I am certainly inspired by Simon’s story and particularly his physical achievements so maybe he has a point?

“I was diagnosed with Blood Cancer way back in 1991 (aged26) when I went to give blood and thank God I did. The consultant told me I was ‘on a knife-edge & could have gone at any time’.At the time, I was a very fit, keen sportsman & enjoying life. That soon changed, however. Diagnosed with a chronic condition, meant my life would never be the same. I soon learned that tiredness, breathlessness & fatigue are common symptoms when you have a chronic illness. In my case, my bone marrow was not working correctly. Consequently, planning social events & work became a nightmare because of my frequent hospital visits & setbacks. My only hope of a cure was a bone marrow transplant. Unfortunately, my brother, Robin was not a match. In those days, the risk of trying an unrelated donor was far too high & would result in death. All I could do was to make the best of my situation & hope that I did not get an infection or indeed, need blood transfusions too often.

 My journey over the past twenty-five years has been quite a roller coaster. Although I strived to maintain a basic level of fitness & to get my life back to some kind of normality, I experienced further setbacks. For example, in 1999, I married my lovely wife, Jane, yet in 2000, when Jane, was expecting the birth of our first & only child, Ed, again, I was admitted to hospital for treatment & needed to spend a further 6 weeks in isolation in hospital. It took a further 6 to 12 months of rehabilitation to get me back functioning. In 2011, when things were getting really desperate, my big breakthrough came. I heard the wonderful news that a donor match for me had been found on Anthony Nolan’s donor register. It was the ‘best & only option’. I was admitted to hospital on 10th January 2012 for intensive chemotherapy. Sadly this failed. I needed countless bags of blood to survive. Exhausted & yet not to be beaten, I was re-admitted to hospital on 30th June 2012 for further intensive chemotherapy & had a second transplant on 10th July 2012.

 In all, I had a punishing 138 days in isolation in hospital. Returning back home. At times, I was barely able to open a packet of crisps & get out of bed. I began to suffer major complications, such as, Glandular Fever, Graft v Host disease & Shingles. For the following year, I was unable to mix socially, because of a high risk of infection. It felt like I was a prisoner. I loved the fresh air. Again, my life was on hold & I was fearful of the future. My consultant at Kings’ College Hospital, London, instructed me ‘to eat between four to five times more than I really thought I ever needed & that I should only eat the very best nutrition, with no rubbish’. My body had been ‘starved of all nutrients’ & been subjected to intensive bouts of chemotherapy. It ‘needed replenishing quickly.’ It felt like my time was running out. It was impossible for me to consume enough fresh fruits & vegetables (Japanese recommend 17 different fresh portions daily). The shrinking of my stomach & my sickness was only making my situation worse.

 This all changed, when I discovered a food that is clinically proven to operate at a cellular level. It is prescribed & recommended by many leading doctors & scientists from all over the world & taken by the German, Swiss & Austrian Olympic teams. Bear Grylls has taken it since he was a teenager. I believe it has contributed to saving my life & I would recommend it to anyone, with or without a chronic illness because it is proven to boost the immune system. Doctors, such as Dr Nyjon Eccles, a chronic disease & breast cancer specialist. (see http://thenaturaldoctor.org) & Dr Gerald Tulzer are just two leading international doctors, amongst many, who recommend it.

 If someone had told me that I would then go on to run the London Marathon in 3 hours 31 minutes & win Gold & Silver Medals in the British Transplant Games, I would have thought they were having a laugh. Life for me, has never been better. I am so grateful to the wonderful support given to me from my family & friends, Anthony Nolan, NHS & of course, my very kind donor. I’m now planning for July 2016, when the Games will be held in Liverpool, UK. I have not had a cold, infection or the slightest sniffle since June 2013. I remain in excellent health.”

If you would like to learn more from me about dealing with chronic illness or you would like me to be a speaker at any events to support fellow patients & their families, please contact me.

Contact details:

Facebook page, Simon’s Fit & Healthy Guide www.simonperkin.webs.com & perky.juiceplus.com

Twitter, @perkinsimon

E mail, simonperkin@btinternet.com.

I would like to thank Simon for sharing his incredible story and wish him well for the future. How did your life change after  cancer? What has helped you deal with the impact of treatment? As always please feel free to share your own thoughts and experiences below.