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Beat The Beast Challenge

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I am pleased to be able to let you know that I have recently sent another £765 to the Disasters Emergency Committee bringing the total of monies raised on the challenge so far so very close to £20,000. it is now 6 weeks since finally reducing my anti-seizure medication to zero and I remain seizure free. And at my Oncology clinic, also six weeks ago I discovered that the scans remain clear.

However I, with a huge grin on my face, asked the fatal question. ‘How long will it be until you, (my oncologist) can finally declare me as clear from the tumour, healed?’ And received the honest reply, never. ‘The type of Glioma (Grade 3 Anaplastic Oligodendroglioma) that you have, has a nasty habit of returning. It is impossible to rid your brain of every single cell and it only takes one cell to be the catalyst for its return. We do not know what the trigger is for the regrowth but we expect it at some point in each and every case such as yours. It is not possible to ever be completely rid of your tumour.’ Clearly this is a bitter pill to swallow. I sort of knew what they had just told me but it had never been told to me in such stark terms. In terms that have gone from could or might to Will. In the very month after which I had managed to walk the 63 miles along the canal from Glasgow to Edinburgh without a hitch, raising well over £1,000 for the DEC, and once recovered realised, jointly with Allie, that I was indeed getting neurologically stronger, finally managing to recover from the brain damage done by the tumour, the treatment, and each and every one of the more severe epileptic seizures. To suddenly wake up to the realisation that the tumour will indeed come back one day in the future was unsettling because it means that at some time in the future, next week, or next month, or next year or maybe the next decade, nobody seems to know, I will have to go through all the fear, the pain and debilitating physical and mental torture of epilepsy and brain focused treatment once again and perhaps then spend another fruitless 5 years fighting to get to a stage at which I can try to perform the simplest of tasks independently once again, while all the time knowing that my Neurologist was absolutely correct, that I may never be neurologically fit enough for fulfilling employment, that I should aspire to nothing more than volunteering in a charity shop for an hour a week. There are so many questions that nobody knows the answers to because all we do know is that it will come back. We just do not know how quickly, how aggressively or when. But what I do know is that I struggle now with only half a fit brain left. When the tumour does come back, how will I ever be able to function independently again with less than half a fit brain left after a new course of treatment? I now understand why my brain surgeon, on diagnosis said that I should be very thankful for the 40 years I had without knowledge of the tumour because this beast will never ever let me go. Why my treatment team insisted that they could only try to buy me some time, and on my registering an expression of interest at the Erskine military care home in Edinburgh, and getting my living will sorted quite so quickly, while also encouraging Allie and I to not waste time if we intended ever to marry. Will I descend, as predicted, towards becoming a cognitive and motor function vegetable and become nothing more than a lifelong burden around Allie’s neck? The temptation to throw the towel in, curl up on the mattress and wait for the lights to go out, once again, is strong as I face the harsh reality that I am locked in a perpetual cyclic battle with the tumour that can only ever end in one way.

Just to make matters even more frustrating, on top of all the neurological dysfunction I have just been diagnosed with Trigeminal Neuralgia which has seen me locked in recurring and crippling cycles of pain down the right side of my face from ear to teeth to jaw over the last few weeks. I now have a prescription for mild anti-depressants to turn down the volume of the pain which are starting to take effect and make day to day life a little more manageable.

However, a Golden Thread running through all my uncertainty is the certainty of my faith, my balanced daily lifestyle, the love and support of my beautiful and courageous wife Allie, my children and family and friends, and all of you who support me in the challenge of course. In the new year I will continue to learn to play Golf, to play the piano and sing, and to juggle as it continues to retrain and strengthen my brain. I intend to make learning to act my main effort as it provides the only hope for a future in some form of employment. I continue to try to save the lives and improve the life chances of as many people as I can through fundraising for the Disasters Emergency Committee as it gives every day a sense of purpose. I thank God for the blessings of life now and pray for the blessing of a future.

I take each day as it comes and no matter what, try to be a most excellent example of a human being. After all, in the immortal words of Cpl Scotty Donaldson, one of my erstwhile section commanders, whom, on questioning over a rather rash but courageous action that successfully took out a machine gun post that was pinning down the entire company, so was stalling the entire Battlegroup’s advance, replied, ‘Sir, it is better to die doing something rather than to die doing nothing!’

I keep fighting.

Thank you so very much for your support, and all the time you have given me over this last year. May I take this opportunity to wish you all a very merry Christmas and I pray that you receive the blessings of health, happiness and success in all that you turn your hands to in 2019. A year that I was never supposed to see and is far from being my last. My resolve is to be able to still climb Arthur’s seat here in Edinburgh with Allie by the time we are 105!

Thank you.

Yours aye

Archie

Deo Juvante
I will Beat the Beast!

Keep Eating the Tenderstem!