The Future

Beat The Beast Challenge

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These neurological function disorders are not on the surface all the time and I can at first glance appear perfectly normal, and I do have occasional really good days, but they are a constant threat and can come with little to no warning, so they have to be beaten if I am truly to have life, if the children and Allie are to be able to enjoy life with me without fear of what might happen next. The brain is malleable so I will just have to find a way to train the remaining half a fit brain. To knock any hint of a decline into a cognitive and motor function vegetable into touch and, smash any further decline towards a form of dementia right out of the park.

So while I am desperate to work, to be a part of something again, I have a mind that is just not fit for the normal stresses of daily life let alone work. I just cannot sustain myself for longer than 40 minutes at a computer or in conversation because the functioning half brain is working so hard to maintain my normal life support systems as well as vision, and hearing, and speech, and swallowing, and walking and breathing. If I try to force it to concentrate for too long I quickly overwhelm the brain and tip myself into a neurological dysfunction which starts to switch off my sight, hearing, speech, balance, swallowing and when it gets really bad even breathing can become a challenge. It used to that just 20 minutes in conversation or on the computer was too much so I have improved markedly over the last 18 months but suspect that I might well have reached the culminating point for any improvement in my brain function for intense periods of concentration.

So I have developed a plan to try and retrain and strengthen the brain using my balanced daily lifestyle, learning to play golf, sponsored by Dalmahoy Golf and Country Club, learning to play the pipe organ, sponsored by the organist of St Pauls and St Georges Church in Edinburgh, torturing poor Allie at home in the flat by learning to play the keyboard while singing a song on the keyboard at home, learning to juggle, learning to dance, trying to extend my concentration span through the slow and laborious process of trying to write a book in 40 minute chunks, and finally with what takes most of my time, but appears to be having the greatest results in trying to retrain my brain in social interaction, memory recall, mental discipline and concentration et al through the medium of drama by earning to act.

Yet I have been told by my neurologist that I will never recover the neurological and cognitive function that I once had, that as far as future employment was concerned, I should aspire to nothing more than volunteering in a shop for an hour a week. Yet still I continue to use the Mediums of Golf, Drama, Writing, Music, Dance and Juggling to try to retrain and strengthen my brain and as a result I have noticed slight improvement in many of my neurological dysfunctional symptoms though my twitches, wobbles and bobbles, that I have affectionately nicknamed my Twobbles, continue to bubble through. I have been advised that I am at the top of the Alzheimer’s risk spectrum, and been advised that I should do all I can to prevent becoming demented, so he is delighted, though somewhat surprised, that I have been able to commit words to memory and the good news is, that after consultation with the Alzheimer’s society, I have discovered that my balanced daily lifestyle, is the perfect brain health and healing lifestyle, as long as I add copious amounts of green tea too.

Even though they can no longer find the tumour and have been unable to since September of 2016, I have been told by my Oncologist, that this rare type of Glioma (Grade 3 Anaplastic Oligodendroglioma) that I have, has a nasty habit of returning. That it is impossible to rid my brain of every single tumour cell, and it only takes one cell to be the catalyst for its return. They do not know what the trigger is for the regrowth but expect it at some point in each and every case such as mine. That it is not possible to ever be completely rid of my 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 before. In terms that have gone from could or might to WILL. To be reminded that the tumour will indeed come back one day in the future is unsettling because it means that at some time in the future, maybe tomorrow, 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, pain and debilitating physical and mental challenges of epilepsy and brain focused treatment once again, and then perhaps another fruitless 5 years, fighting to get to a stage at which I can try to perform the simplest of tasks independently again, while all the time knowing that my Neurologist was probably absolutely correct, that I will never recover the neurological and cognitive function that I once had, that I may never be neurologically fit enough for fulfilling employment, that I should aspire to nothing more than volunteering in a 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. If 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 15 years that I had had without knowledge of the tumour, because this beast will never let me go.

I now understand why my treatment team insisted that they could not shrink, kill or cure the tumour, that they could only try to buy me some time, and insisted 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 ever intended 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, pull up the duvet, and wait for the lights to go out once again is strong, as I face the harsh reality that I am locked in a vicious, perpetual, cyclic battle with the tumour that can only ever end in one way.

However, I am determined to make the impossible possible: to beat this beast of neurological dysfunction and ensure that my brain tumour NEVER returns, and if it does, to beat it back again. On the way perhaps I could become strong enough to compete in a professional golf tournament, act on a stage or in a movie or lots of movies, have a book published, or perform on the keyboard while singing a song that sells as a single track, and all the while trying to raise as much as I can to save the lives, and improve the life chances of as many people as I can, for as long as ever I can, through the Disasters Emergency Committee. So please challenge me to beat my beast of neurological dysfunction, challenge me to prevent the brain tumour from ever coming back and if it does, challenge me to beat it back again, by sponsoring me for just £1.00 a month. All the details on how to sponsor me can be found on my website at

 

beatthebeastchallenge.co.uk/sponsorArchie

 

I guarantee you that every penny raised will go to the Disasters Emergency Committee.

I guarantee you that I will never call, email or contact you in any way to ask you to increase your sponsorship.

I guarantee you that I will not pass your details on to anyone else because I do not hold your details. The standing order is a private and confidential contract between your bank and the Royal Bank of Scotland only.

In the mean time I seek to provide hope, inspiration and encouragement to fight back for an improved treatment outcome, for those stricken with disease. If you know of a friend or loved one who would benefit from a little hope, inspiration, encouragement, and an introduction to my balanced daily lifestyle, then I would be delighted to arrange to meet with him or her personally if possible, or over skype and email if distance is too great, on a one to one basis as a living and breathing example of what can be achieved. Then please get in touch with me via email at archie@beatthebeastchallenge.co.uk I promise you that nobody else, other than my wife, has access to my email account and I will treat all emails and subsequent consultations with complete confidentiality.

May you be blessed with health, happiness and success. Please bless me with your sponsorship.

Thank you.