Beat The Beast Challenge

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Having successfully operated on the Cholesteatoma it was time to focus on the Brain Tumour. I was blessed with a wonderful oncology and neurology team from the NHS at the Western General Hospital in Edinburgh who kept the tumour under surveillance, and when it jumped to a far higher grade I was rushed into brain surgery. Surgery only managed to remove 40% of the tumour as the remaining 60% of the tumour was buried far too deep into the brain. However the confirmed diagnosis taken from the biopsy that was removed during surgery of a rare, far more aggressive and harder to treat than at first thought, Grade 3 Anaplastic Oligodendroglioma, allowed my brilliant Oncology team to successfully fight, to get me accepted onto a trial being run by the European Institute of Oncology, because she had strong hopes that while they couldn’t shrink, kill or cure the tumour, this particularly robust line of treatment, being offered by the trial, might just about buy me enough time to see the children into High School, and a little bit older and therefore better equipped emotionally before my passing. She knew that such a robust line of treatment could damage the brain and we had a very frank discussion about that fact. In the end, the fact that it might extend my life by the same again, out to 6 years in order to see the children into and approaching the end of High School meant such a lot to me after spending all those years away in the service of the Nation. I wasn’t meant to be able to hang around for long afterwards anyway so decided, to hell with the brain damage, let’s go for it.

I was accepted onto the trial and then given the hardest line of treatment. No gaps, no rests, we were going to hit this tumour as hard as we could, not to cure it, kill it or shrink it, we couldn’t do that, but to put it to sleep to buy me and most importantly the children some time. I then went straight into a full 6 weeks, 30 back to back sessions, of brain-focused radiotherapy followed by an entire year of discomfort with 12 monthly cycles of chemotherapy. The expectation was that they were going to have to pull me from the trial after 6 months of chemotherapy because it was just too punishing on the body, especially so soon after brain surgery and brain focussed radiotherapy. However I was determined to beat this beast of a disease, to sail through every treatment gateway with my colours flying and guns blazing so set about finding ways to reinforce my treatment and having settled on the 5Fs made it through the treatment.

The 5 Fs:

Food – There was so much in the media about the importance of food in strengthening the body to resist or even attack a cancer and that there are even certain foods that will themselves attack the tumour. That sounded good to me so I dived head first into Dr Google and came out with an eating plan that consisted of acid alkali diet, reinforced with a raw vegan diet, reinforced with the continual grazing of fruits and vegetables that we knew would attack the tumour. But I got the balance horribly wrong and ended up needing an entire course of treatment to put out the fire I had lit within my body. However, after a succession of trials and errors, with the assistance of the NHS, I settled on a diet that would help me to reinforce the treatment I was being given. Read my Balanced Daily Lifesyle.

Physical Training (Ph sounds like an F!) – “If exercise were a pill it would be one of the most cost-effective drugs ever invented” Dr Nick Cavill. There was a large amount in the media about the benefits of exercise in healing the body. As I had kept my physical training routine going after leaving the army, and with a border collie that needed lots of exercise I also continued with my pre-work early morning and post-work evening long walks interspersed with a run or strength training circuit or cardiovascular circuit or swim before lunch so I felt that I had the physical training element covered but also re-discovered the emotions of fear and anxiety so took to the hills and mountains of the Trossachs National Park to find peace from the fear and anxiety that plagued me so. Twice I suffered an epileptic attack on the mountains and on each occasion I was lucky to make it home. After the second occasion my GP, quite rightly, banned me from walking on my own and demanded that I found a walking partner. I had over done it and once again had to learn the lessons from the process of trial and error to settle on a physical training routine that was sustainable and would help to reinforce the excellent treatment I was being given. Read my Balanced Daily Lifesyle

Faith – From childhood I always had a strong faith and turned to my faith for solace. I found periods of deep prayer, reflection and meditation on my own in St Modoc’s church in Doune deeply fortifying and would return home feeling so very much stronger. But with God’s help I also developed a belief, a hope, a faith in myself, that I really could beat this beast of a disease.

Family and Friends – I have already spoken of the encouragement I felt from the love and support of family and friends by involving them in my journey from the start and knew that they would be of huge benefit to the children and I on the treatment journey. But I had never expected what followed: The Ministry of Defence agreed that my brain tumour was indeed attributable to my military service and that it had rendered me unemployable so awarded me a small war disablement pension. However, unbelievably, because the date of the blunt force trauma that triggered the brain tumour was before the start of the new Armed Force Compensation Scheme, and because the old compensation scheme had been replaced by the new Armed Forces Compensation so was no longer in existence, I was refused any form of compensatory payment for the pain and suffering caused. After witnessing an epileptic seizure that would have killed me had we not made it to hospital in the back of an ambulance, now angry with the Army, angry with the disease and now gripped by fear for her immediate future my wife presented me with a letter from a lawyer giving me 48hrs to get out of the house. I was clearly well past my use by date. Six months after that separation however I accidently sat in the seat of a woman on the train. After giving her her seat back I asked her to sponsor me like everybody that I met. Sadly she couldn’t sponsor me but she did become my walking partner and over time, as we walked and talked so we fell in love. I told her that I loved her but then, just a couple of days later, begged her not to love me back because I realised, that with just 1 year of my prognosis left to run, that I was far too great a burden to hang around the neck of the woman I loved. Despite me being of poor health, no wealth and no earning potential, Allie told me that she loved me too, fished me out of the deep dark river of despair and carried me through the finishing gate to an MRI that saw the tumour that couldn’t be shrunk, killed or cured to have disappeared completely. Although the tumour remains out of sight, the expectation is that the tumour will come back at sometime in the future. Maybe tomorrow, next week, next month, next year or maybe the next decade, nobody seems to know but what they do appear to know is that this tumour will come back. The love of a good woman, my children and family has significantly helped me to fight back for successful outcomes.

Focus – I started the original challenge to beat my beast of a brain tumour driven by a desire to reassure the children who of course took my diagnosis so very hard while breathing hope, inspiration and encouragement into their lives while also ensuring that my final days were not for nothing but instead spent trying to save the lives and improve the life chances of as many people as I could, for as long as ever I could by asking everybody that I met to challenge me to beat my beast with their sponsorship for £1 per month for the Disasters Emergency Committee. To have a reason to get up every morning and keep fighting rather than to curl up under the duvet and wait for the lights to go out is a very powerful motivation to carry me through those dark days that inevitably grip me from time to time.