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Beat The Beast Challenge

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These last two days have seen only 2.55 miles walked while climbing 200.46 feet., An MRI scan, a really tough afternoon getting to grips with harsh realities during my epilepsy clinic followed by a wonderful meeting that further encouraged me to keep fighting.

The MRI on Tuesday was uneventful. Just a routine scan. The needle went in without issue to inject the dye that was used to try and highlight the tumour. I had brought in a CD of Handel’s Messiah to listen to during the scan. As the scan started I prayed that this scan would show further healing and then fell asleep. There was nothing else to it. Just the gentle electronic noises and knocking of some technical wizardry taking place around the head. I receive the results from the scan in the New Year.

So today saw me attend my epilepsy clinic. Allie was taking me in and as we drove in I was excited. I was sure that I had beaten the beast. Nearly every day I seemed to be clawing back little bits of memory and cognitive capability. I was healing, slowly but surely, I was healing and improving. The small victories of the silly little things that only I would notice were becoming more noticeable to others when taken in combination. But I was also tired. Dog tired. That fire safety curtain of tiredness had descended with its unrelenting weight and was stifling me. I was falling asleep on buses. Falling asleep on trains. Falling asleep in cars and wandering around the flat forcing myself to keep going because if I stopped, I slept. And if I slept during the day I just couldn't sleep at night. It was debilitating and was holding me back. At this time of healing, I so desperately wanted to feel normal again and concluded that it could be the epilepsy pills that were making me so jolly tired. If I was healed, well then perhaps I no longer had epilepsy. Maybe it was the drugs that were clouding my mind, making me sleepy and triggering these little seizures. If we reduced them a little, wouldn't that make me feel better? That was the question for today. Was it not entirely possible that if we have made the impossible possible with the tumour having all but disappeared, that we have also cured the epilepsy? After all it was the tumour that triggered the epilepsy. Can we not experiment and reduce my dosage a wee bit at a time in order to try and prove or disprove my theory? Once we had parked Allie took my hand and pleaded with me. Archie promise me three things. Firstly, that if he agrees to reducing your dosage that you will wait at least until after Christmas. Secondly that you will take no further reductions until after you’re married, and thirdly and perhaps most importantly of all, that you will listen to Darren. I promised, thankful that Allie would at least allow me to ask the question even if in her own mind she would rather I didn’t. I could understand that. A seizure can be really scary, especially when it starts to affect me outwardly, change my voice, my depth perception, my cognitive and motor capability, while not knowing when this creeping all-consuming beast will release its vice like grip of me. Allie has helped me fight through a number of them so had the absolute right to question the sense of my thoughts and desires. Allie was my voice of reason. I had to and must listen to her in my desperate search to find normality.

As you know I have a firm belief that God has healed me, but have become increasingly frustrated that nobody seemed to believe me. That nobody could hear me scream. I felt trapped by this enormous great canvas bag that had been hung around my neck on my diagnosis, then filled with sand. It was weighing me down in this deep dark hole of a diagnosis from which there seemed to be no escape. Today I was making a bid for a lightening of the load in the bag that was pinning me down, holding me back. We started with a review of my seizures and possible causes and linkages since my last epilepsy clinic. I confirmed that the current dosage of my anti-seizure medication had had a dramatic effect and was keeping me seizure free for significant stretches of time, but that it was making me jolly tired. This was my break-in battle, the point at which I introduced my desire to decrease my dosage in line with my apparent healing. Darren was dead against it. Time and time again he has seen a patient who has reduced his dosage suffer repeated seizures. The body of evidence based on large epilepsy studies is such that no dosage reduction should be considered until a good 3 to 5 years has passed without a seizure. My heart sank and I started to try and convince him. So he turned to my Oncologist’s report from my last clinic with her: that I was doing reasonably well and there was a slight reduction in the visible tumour but that I had to increase my physical activity and cognitive training activity with some urgency; that I had been asking about a refined prognosis; that such finite details are difficult to pin down accurately, but that there had been a positive result from the clinical trial which had seen an increase in the number of people with similar tumours making it to five years. Then Darren did the Maths. I was diagnosed in September 13 so that gives you approximately two years until the next gate. Let’s therefore leave it for now and not add any additional pressures on you with the return of seizures. I made a final plea to Darren. I explained that my Oncologist, the vicar in a friend’s church, the ranger on safari in South Africa, Heather MacLeod and all my friends and family were saying the same thing as you. ‘Don't stop Archie. Keep fighting to beat the beast. You have a long way to go, possibly 5 years before anyone can say that you are healed.’ But I am convinced that I am healed. I was struggling with all of this frustration. My throat was hoarse from shouting, trying to be heard from the bottom of this deep dark hole of a diagnosis but nobody could hear me scream.

But at the appointment today, Darren and Allie helped me understand. My brain has had to deal with such a lot of pressure and had been assaulted heavily over the last three years of treatment. Transition into civilian life after discharge from the Army, the diagnosis, brain surgery, radiotherapy, chemotherapy, divorce, and moving house. All of the most stressful situations possible were rolled into one short time span of three years. So it is no surprise that I am so tired but I have passed through the first gateway of three years. I have beaten my worst prognosis despite all that, but I am not out of the woods yet. My trial has increased my chances of a 5 year survival. If I can get through to that 5 year gate, and my scans remain clear and seizure free, then we can look at a review of my anti-seizure medication. That is in 2 to 3 years’ time. Again I wanted to scream that if those were my final 2 years then I wanted 2 years of lightness, not 2 years of tiredness. But Allie reminded me to listen to the voice of reason, of experience, of wisdom based on that experience, so I didn't scream. I couldn't scream. Darren confirmed that the small reduction that I was looking for wouldn't change how tired I felt, not a bit, and that it would most likely put me back into hospital. I was hoping for a small victory in a reduction in my anti-seizure medication but instead got a stark reminder about just how much work I still had to do to Beat the Beast and just how little time I might have to do it.

It was a great appointment in which Darren did so very gently, skilfully and cleverly, exactly what he was paid to do: to advise, guide and prescribe in order to give the patient the best possible outcomes against his epilepsy. As I sat in the car feeling a little deflated, Allie reminded me that my brain had been assaulted and deeply stretched and stressed over the last 3 to 4 years. It was no wonder that I am tired, and with such positive results wanting to break free and run, but I can't just yet. I have to be patient and keep going. As we drove into Stirling to post some presents I realised that I had to stop wallowing in this deep hole of self-pity. That I had to get a grip and haul myself out of the deep dark hole of diagnosis and keep fighting. I reached the 3 year gateway. With your help and God's help I can reach the 5 year gate with all saluting cannons firing. The next gate is only 2 years away. I was going to beat this beast once and for all.

As we drove away from the appointment to head to the Thistle Centre and post some presents, I told Allie how jolly lucky I was and how very thankful I was for the fact that she had stuck by me. That she was prepared still to marry me despite the uncertainty and possible horror of what lay ahead. I couldn’t thank her enough for her faith in me. We drove in silence and once in the Thistle Centre and having posted the presents Allie confirmed over a coffee that she was on this helter skelter of a journey with me, that it felt at times that we would be clawing our way up the slide of the helter skelter on our hands and feet in order to get to the top and beat the beast, only to hit a patch of water occasionally and find ourselves hurtling back down to the bottom. That journey is all down to my resolve and determination to beat the beast despite the odd set back. It was hard, very hard to join me and stick with me on that journey but that she had no intentions of jumping off. I was hugely thankful for the day that God brought us together.

Allie drove back to Edinburgh and I headed to Callander. I was to have a meeting with Maz from Skidaddle, the adventure sports ‘Not for Profit’. We talked about our shared experiences and outlooks and as our misty eyes threatened to burst into raw emotion, she introduced some great ideas for the future. As she did so, I realised that I still had so much to give and as Maz introduced a particular idea she might want my help on in the future I smiled. I am most definitely going to be able to prove that I have beaten the beast. I am going to keep working hard and do it. I have a future to be shared with the children, with Allie, and with Maz and her wonderful ideas.

Yours aye

Archie