On Monday night I had a seizure that would not let go. It started with a hive of bees that swarmed into my left arm from the keyboard of my computer as I sat and tried to work. They were vibrating so angrily under my skin that, as I curled up on the sofa under a blanket as if to hide from the horrors that were unfolding in this seizure, I found myself instinctively holding my left hand against me in the contorted manner of a person with cerebral palsy. I found it sort of comforting as it seemed to reduce the discomfort of the angry bees as each touch to the skin made the bees more angry and the discomfort greater. After a while the bees calmed and slowly dispersed but, as I tried to eat, I discovered that I was still very much under the grip of this seizure. My movement to the dining room table was on legs weakened by the physical effort of the seizure and I dropped my fork many times as I tried to eat. My hand was numb and swollen in my mind, a mind and body that felt very much like it had just been flung off a superfast roundabout ride in a play park. I was dizzy, my eyes all blurred, my legs were wobbly, and my arms and hands weak. My face felt as if it was palpitating into a face of many shapes, and my lips, cheeks and tongue felt swollen so trying to eat, and at times even breathe, was a little like trying to eat with a pair of skiing gloves on that were three sizes too big while trying to breathe through a drinking straw. I struggled to get food onto the fork and when I did struggled to get it into my mouth and was making more and more of a mess at the table. It was when Allie had to resort to helping me to eat and to cleaning my mouth and my hands and front of my shirt with a tissue that I realised that I had regressed into the vegetative state that I had so far managed to avoid and that was my predicted destination if the tumour continued to progress. As I sat, I was completely aware of my inability to coordinate my motor function to eat, and with each mouthful became increasingly feared of choking as my ability to control my swallow diminished rapidly. Tears started to prick my eyes. I was completely aware about how feeble I had become but could do not a damn thing about it. The harder I tried to remain independent, the harder it became for Allie. I somehow had to try and remain strong and stoic but compliant to the requests of Allie as she tried to feed me and clean me safely, her own fears for what might happen next in the forefront of her mind. My throat constricted further and each mouthful was a real challenge but I had to eat to fuel the body with the nutrients I needed that were in this mackerel, fennel, leek and potato delight cooked so beautifully and being fed to me so lovingly by Allie, in order to beat my beast. Slowly the seizure dissipated further but as it did so the bees left behind a beast of a headache. I tried to pray it away in bed in the hope that my earlier 28.8 mile bike ride to Dalmahoy and back, coupled with the seizure, might induce enough tiredness to let me sleep despite the pain. As I lay in bed in the darkness, holding on to my head with my right hand and trying desperately not to wake Allie as I clumsily felt for changes in my still palpitating face with my numb left hand the pain grew and grew. It felt like the bees were building their own nest in my front right temporal lobe and as my face palpitated I started to fear a brain bleed. I started to fear the worst. I started to fear a stroke but couldn’t think clearly through the pain of it, a pain far worse than any that I have experienced since and including brain surgery and, the longer I lay, the worse it became, the more my face appeared to move and the more feared I became. I got out of bed and fumbled around in the medicine cabinet in the dark for Paracetamol. I could and should have turned on the light but did not want to see a gruesomely dropped face with swollen and distorted lips so went instead around the flat and to other cupboards that may have had Paracetamol, but in the end, with a pain so bad I was close to vomiting, I had to wake Allie. I woke her gently as I rubbed her arm with the light off so as not to shock her with the state of my face. Allie roused and through my blurred speech understood that I needed Paracetamol. She got it for me and then held me close to comfort me as I wheezed and groaned slowly to sleep, not sure if I would see another dawn.
I woke sure enough to the news of further devastation in the wake of Hurricane Irma on the radio, and with the mother of all post seizure hangovers I could have and perhaps should have stayed in bed. But Allie would go for a run despite her hormone headaches and return feeling better for it so I followed her example and went for a 2.87 mile run. It was not my fastest run ever, nor my most fluent in stride and style, but as I jolted and tripped along the uneven pavements and cobble stones of Newhaven, my head protesting slightly with each trip and jolt, I started to realise 2 things:
The first is that, as mankind experiences again the ravages of the hurricanes, I realised that the two things that we can do to save ourselves from the worst effects of climate change are also the two things that we can do to save ourselves from the ravages and worst effects of disease and ill health. That if we leave our cars behind, walk or cycle to work or to school or to the supermarket and then buy less meat and lots more fruits and vegetables, ideally organic because it is better for us and the environment, then walk or cycle home again, wash, chop and eat in accordance with my balanced daily lifestyle then we have reduced the carbon emitting and climate change driving pollution of our cars and reduced the deforestation of oxygen giving and carbon dioxide stripping rainforests in order to produce more meat, while at the same time fuelled and exercised our bodies in such a way as to greatly enhance our immune and whole body systems to fight off the worst of diseases before they have a chance to develop into a life limiting condition.
The second is linked to the first and led to me finding my box. You will remember from my last post that my enthusiastic, forward leaning, forward thinking and wholly ambitious approach to this life and my new life was a little too far out of the box for mainstream organisations, and that with the cognitive challenges and lack of cognitive discipline and endurance brought about by my tumour, and eighteen months of brain focused treatment, I just didn’t seem to have the same confidence in myself and my capabilities anymore. That I would get lost in a cognitive meltdown in any busy environment which was just about any environment in modern life. That I didn’t seem to fit in any box for future employment. That I didn’t want to be a burden on the state as I currently was, being unemployable and living off of my War Disablement Pension whose payment eased the financial burden of a disease triggered by a blunt force trauma sustained during my service and whose presence, lies largely unseen and therefore incomprehensible by many that I meet. I wanted instead to have a purpose in life, for me to stop being a burden, but instead to contribute in some way to society beyond the litter picking that I do locally every day to continue the training of my balance, cognitive and motor function in a busy and fast moving environment. Just imagine litter picking in a 20 mile an hour East wind on a litter strewn Edinburgh City Street, great brain training. I have finally realised that I have been standing in the box for which I searched the whole time; that I was that organisation for which I sought. That while I was only an unincorporated charitable association, set up by me during my chemotherapy, and mentored by the challenge accountants and my elder cousin of my father’s generation, and founder of a charity still in existence and going strong, who form the board of my charitable association, and while I was little known or heard of, what I did have was an incredible story that made me living and breathing proof of the benefits of eating better and moving more as directed by my balanced daily lifestyle, in combination with the marvels of modern medicine. That I had developed a lifestyle that not only had helped me to beat my beast but could, quite conceivably and with increasing excitement, help many millions in the UK to beat their beasts of life limiting conditions before they even become a problem. That by encouraging the UK to eat better and move more we can stop the rot of the UK into the morass of a diseased civilisation. And for those already fighting their beasts, that by encouraging them to eat better and move more in accordance with my balanced daily lifestyle, and with the support of their medical treatment teams, they can significantly improve the expected outcomes of their treatment.
At the moment there are a multitude of incredible organisations providing expert advice and guidance to the general public in their own specific fields of cardiovascular, respiratory, musculoskeletal disease and cancer. There are also a multitude of organisations who offer excellent advice on food on its own, or on exercise on its own, but there are so many organisations out there doing just that that a google search on an area of health leaves one’s head spinning full of facts, some true and accurate, many not, and advice in so many shapes and forms that one knows not which way to turn. There is a huge space crammed full of confusing information. My box is to drop right into the middle of that space and create a clear and very simple message agreed by and supported by all those incredible organisations in order to provide some very clear, simple and straight forward guidance, and with it hope, inspiration and encouragement uncluttered by the constraints of charitable and organisational rules and regulations, uncluttered by party politics or the need to sell a particular product for commercial gain, uncluttered by the spin of spin doctors or the choke point of a communications team. I will help improve the lives and life chances of as many people as I can for as long as ever I can by becoming a signpost towards a happier and healthier so better, much, much, better life. And at the bottom of that signpost will be my box in which is a very simple balanced daily lifestyle devised and tested to destruction by this simple ex-Army Officer who beat his terminal brain tumour, triggered many years earlier by a blunt force trauma sustained during his military career.
So my box remains firmly in this challenge. But no longer to beat my beast but instead I, Archie, challenge you to follow my balanced daily lifestyle to beat your beast of disease or ill health that lurks unseen just around the corner before it even becomes a problem. Because that beast of ill health that could have been prevented destroys lives, whole lives and the lives of those you love around you. So take up the challenge while there is still time and save yourself and your family and friends from an unnecessary trauma and if you are already fighting your own beast of a disease, follow my balanced daily lifestyle as it will, I promise you, in partnership with and in agreement with your brilliant medical treatment team, greatly improve your expected outcomes for your disease. It did for me. I no longer have a prognosis. There appears to be no measurable tumour. This beast that could not be shrunk, killed or cured has been beaten by a few simple and sustained changes to my lifestyle.
I will of course try to lead by example and have therefore in the last two weeks, of course, continued to eat better and move more and have, in the process managed to walk 58.85 miles including 3 hills ascending 3’687.04 feet, while litter picking 26 bags of rubbish totalling 41.6kgs, and cycled 115.84 miles ascending 6,160.1 feet, and cycled and rowed 2.65 miles in the gym and have done 14 pull ups, 96 press-ups, 201 sit-ups, and lifted 5 kgs over 252 metres and moved 756kgs over a metre and run 35.82 miles ascending 1,233.59 feet and swum 1.2kms while consuming 700g of oat-based seeded cereal with 700g of granola, 14 bananas, 210g of ground flaxseed, 560g of blueberries, 14 apples, 2,800ml of orange juice or orange and mango juice , not from concentrate, 700g of raw tenderstem broccoli, 1,400g of raw carrots, 840g of cherry tomatoes, 840g of red grapes, 28 brazil nuts, 56 squares of 85% dark chocolate, 16 eggs, 350g of spinach, rocket and watercress salad, 30 slices of wholemeal sunflower and pumpkin seeded bread, 2 leeks, 2 sticks of celery, 2 bulbs of fennel, handfuls of fresh basil, sage and rosemary, 2 portions of red meat, 2 portions of oily fish, 3 portions of chicken, 1 portion of duck, 4 portions of white fish, 1,050ml of Red Wine, 14 oranges, 14 yoghurts, 28 tablets of turmeric supplement, 14 tablets of Vitamin D3 supplement, 7 mochas, 1 pizza and 2 ice creams!
So I now have a new focus that will see me trying to coordinate that space in between all of these amazing health organisations in order to try and deliver a clear and simple message supported by all. My key driver is no longer seeking sponsorship to see me taking on activities to beat my beast in support of the 5 wonderful charities the challenge supports, but will now become one of seeking to challenge you all to take up my balanced daily lifestyle to beat your beast before it comes, and if it has come, it is never too late, take up the challenge of my balanced daily lifestyle in support to your brilliant medical treatment and you will improve your expected outcomes. I continue to seek sponsorship which will be split, as before between 5 health charities. I will of course notify you in good time before making the change of all donated funds going to the 5 new health charities which will be decided in the fullness of time. In the meantime all funds raised will continue to go to the 5 supported charities of the challenge.
I will now go and seek expert medical opinion to my balanced daily lifestyle as the way forward to prevent and beat many diseases, not just cancer. And once I have a strong body of medical opinion and evidence in support to my lifestyle I will be seeking expertise to help me get my simple message cleanly, clearly, simply and irresistibly into that cluttered space. In the meantime take up my challenge to start on my balanced daily lifestyle and take notes of your situation, changes you made, and improvements you felt in your life to then consider telling your story on my website, for the more who start to follow my lifestyle for their own benefit, the more that will follow and so we can start to make a real difference to the health of the UK.
And now there is great news and bad news and I share with you the good news first. My scan remains clear. There remains no measurable tumour. There has been no regression. And further to that, the headache I experienced during the seizure on Monday night was probably not an epileptic seizure at all. After all my argument has been for some time that if the brain tumour jumping to a higher grade tumour was what triggered the epilepsy, if I have now beaten the brain tumour down to a point at which there is nothing left, how is it that, after all this time that I still have epilepsy? After listening to my symptoms and what I was experiencing the very morning of my oncology clinic as another seizure gripped me and my headache returned, my brilliant oncology team consulted the world leading expert in a new scientific understanding of the field of migraine based seizures caused by brain focused radiotherapy called SMART syndrome. I struggled to keep up in the appointment and even my consultant and nurse who I knew so well after the last 4 years of treatment looked so very different from what I remembered. I did not recognise them at all as my peripheral vision drifted in and out of focus and my concentration span evaporated into nothing and I struggled to remain in the room even. It was as if I was being dragged cognitively from the room and being held forcibly out of the room. Each time someone spoke to me I had that rush of adrenaline as I realised as such and somehow had to bring my brain back into my head and into focus. I would manage it briefly before the brain would disappear off again leaving behind this vacuous, cold and very empty, hollow, scared and confused vacant body. I struggled to make any sense as I spoke but Allie was with me and talked for me. She filled in the gaps for my oncology team and the bad news followed. My anti-seizure medication was increased further with the addition of a tiny dose of aspirin in the morning to thin the blood and stop the platelets from sticking as they try and feed oxygen into the brain. So my understanding from my clinic is that In effect my treatment had changed the consistency of my blood which of course leads me to inadvertently be starving the brain of oxygen and vital nutrients which were then setting the conditions for these rather odd and disturbing and somewhat painful type of seizure. I was frightened of the long term effects such a diagnosis might have for my brain health. Were these visions I was seeing and my rather poor short term memory a glimpse into a future disconnected from the world I know and love. Was I on the slippery slope to dementia? I know not the answers to this and as I struggled to understand why it was that I was doing so incredibly well against the tumour but wading through treacle when trying to get back to a point at which I might one day feel normal, I was starting to feel the acid taste of fear once again, fear for a future devoid of any familiarity, surrounded by a foreign and hostile and dangerous world and fear for the future of Allie having to look after her new husband lost to her, far too soon, even though I was there physically. I was feared and bitter that we should be dealt such a blow but as I considered the news the more I became thankful that I have been eating better and moving more in accordance with my balanced daily lifestyle as I am quite sure that will have contributed significantly to forcing blood and with it oxygen into the brain even when a little sticky, and even better than that, blood that was carrying all the vitamins, minerals, macro and micro nutrients needed to feed the brain and encourage healing. I could perhaps have been in a far worse state had I not been following my balanced daily lifestyle. Even better than that the world leading expert on this newly discovered phenomenon has taken me onto his books as a patient and become part of my brilliant oncology team so I will be asking him his thoughts on the advantages of my balanced Daily Lifestyle for those patients receiving radiotherapy on the brain. So while this epilepsy has been pulling me backwards into a kind of stasis from which I was struggling to escape, I have been blessed with the knowledge of a balanced daily lifestyle and with the support and treatment from the best in their fields, so while it will take a long time, an awfully long time to get through this and bring my blood consistency back from the shock of treatment and to bring my brain back to a level of seizure free and sharp cognitive function with an endurance beyond 40 minutes, I can and will do it. I must and will never ever give up.
The final bit of treatment prescribed was a longer sleep time from 7 to 8 hours a night with an extra hour of rest post lunch in order to maximise the conditions within which the brain will heal. Losing a further 2 hours in each working day will be tough to manage as I strive to make a difference elsewhere but, as Allie and Dr Erridge reminded me, it is critical that I am good to myself and ensure the optimum periods of rest, on top of eating better and moving more, in order to maximise my chances of effecting a complete recovery.
So I will get there, it will just take a little bit longer, baby steps at a time, so please continue to watch this space.
Finally, if you can or know of anyone who could help me in my quest to change lives for the better, or have some questions to ask or brilliant ideas, do please get in touch. I would love to hear from you on archie@beatthebeastchallenge.co.uk.
Thank you.
Yours aye
Archie
Deo Juvante
Together, we can beat the beast.