My name is Simon. I am 71 yrs old, married to my all suffering wonderful wife Linda for 45 years. We recently moved to Southampton UK after having lived in Lytham St Annes, Lancashire UK for over 40 years. I have 3 daughters-Kersten who lives in Adelaide, Australia, Amalia and Leanne (Lily) who both live in London UK. Amalia has given us two wonderful grandchildren Cesi and Koka who we see regularly now we live in the South of England. I am now virtually retired having been in the mobile telecoms industry since 1985.
In August 2000 I found a lump on my neck like a ping pong ball and my GP referred me to an ENT specialist who performed an endoscopy through my nose. He then referred me to an oncologist who arranged for a CT scan and a PET scan in London. He informed me that I had stage 4 Diffuse Large B Cell Non Hodgkin’s Lymphoma that had spread to my spleen, spine and colon and that I needed to start CHOP chemotherapy and intrathecal Methotrexate the following week. I was shocked and asked him what my life expectancy was and he said I had at least a 50:50 chance of surviving 5 years. At the age of 49 at the time I didn’t take this as good news but was determined to be the exception to the rule.
I think I’ve probably done that!
One of the hardest things has been the treatment, I had CHOP chemotherapy and in particular the intrathecal methotrexate which gave me horrendous migraines and pain into the nerves in my neck and shoulders. The anti-sickness medication didn’t always work for me either. It probably took around a year post treatment to get what I felt was near normal again. I think it was a triumph that I lived a normal life for the next 17 years until the drenching night sweats and a weight loss of over 10 kilos in 3 weeks (very effective but not a diet I’d recommend!) told me something was definitely not OK. I then was referred to a specialist cancer hospital and was given 6 rounds of Bendamustine and Rituximab chemotherapy. This was very effective, with little to no side effects and put me back in remission once more but a post treatment routine echocardiogram revealed that I had Atrial Fibrillation and a low ejection fraction in my heart (heart failure). I have since had a CRT-D pacemaker fitted (which hopefully will activate the built in defibrillator if my heart stops) and a left atrial appendage closure (more on this later). I have also been very fortunate to be included in a clinical trial in November last year at a hospital in London for stem cell treatment where stem cells were taken from bone marrow in my hip and inserted in my left ventricle via an angioplasty procedure. I am hopeful that this could help to repair my damaged heart muscle and improve my energy levels once more.
each with their own incredible life story and to have the pure joy of seeing my grandchildren develop into the bright happy boys they are today.
As I am self-employed, it did affect my business to a degree when I had to take time off for treatment and at times when I was too tired to work but I managed to continue working otherwise. I didn’t have to make too many changes other than rescheduling trips abroad and appointments.
I’ve tried to let my diagnosis affect me as little as possible and have tried to live life as normal as much as I can. Tiredness and fatigue have been my biggest issues but I have managed these the best I could. I think initially it was a big shock and a worry for my wife and daughters but they have always been very supportive and have adjusted well to my situation, for which I’m very grateful.
I have tried to eat a healthy diet with plenty of fresh fruit, vegetables and salads and very little red meat. I have stopped taking sugar in tea and cut out fried or fast food. Exercise has been restricted due to my heart condition causing breathlessness but since my stem cell treatment I have started to play golf with the aid of a buggy and walk around 2 miles three or four times per week. I also do strength training using a light spring on a Bullworker to encourage use of muscles that have been inactive for some time. I have also just rescued my old bicycle from the garage and intend to start cycling again this Spring and Summer.
If I could offer guidance to others in the FL community, I’d say, always stay positive. Live your life to the full as much as you can and when times seem tough remember that ‘every cloud has a silver lining!’ and follow Winston Churchill’s advice “When you’re going through hell ……keep going!’ and “Never, never, ever …..give in!”