This last month has been brilliant, brilliant, good and awful. But most importantly it has seen a month of care of the highest order. Not wrapped in cotton wool sort of care. The best care delivered when and where needed and most importantly by the brilliant NHS team that I have grown to know, love and respect dearly from diagnosis back in September 2013.
Firstly it saw an additional CT scan followed by an additional MRI in order to deny or confirm the presence of a regrowth of the cholesteatoma. The tests were clear. The ear is clear and while I still have no hearing whatsoever in the right ear, my hearing in the left ear was actually recorded as being better than average. Brilliant.
Secondly my Oncologist remains delighted with the scans of the brain. They still cannot find it anymore (the brain tumour, not the brain!) Even better than that, further tests ordered immediately after my oncology clinic revealed that the acute heart pains that I had been suffering from over the couple of days prior to my oncology appointment were not a cardiac event. They were most likely linked to my neurological dysfunction. Brilliant.
Thirdly my Endocrinologist cannot find any sign of the suspected Diabetes Insipidus. There are more tests to be conducted to be sure but all the signs are looking positive. Good.
Finally it was the turn of my neurologist and I was starting to develop a suspicion that perhaps, just perhaps, I was being protected from the true nature of the beast I still faced even though I had beaten the tumour. But I was really keen to know what the timescales were for me getting back onto the jobs market and how long I would have to wait before I could start to see further improvement in my cognitive endurance, in my ability to concentrate, to multi task and decision make. I just had the feeling that I was sliding backwards, paddling hard against the tide and close to capsize. So I asked the question and asked that my neurologist was brutally honest with me. He was, so I learned the truth. I was never to regain the cognitive capacity I once had. I looked at him and pushed further with hope still in my belly, ‘Never?’ ‘Never!’ came the reply followed with the explanation and reminder of my situation. ‘You have an enormous hole in your brain left by the tumour, that I have had 6 weeks of brain focused radiotherapy which is still fizzing in the brain, a year of chemotherapy which is also still fizzing, which along with the scarring from the surgery, and each and every epileptic seizure, means that you are brain damaged. With the treatment still fizzing in the brain, the damage, and with it the symptoms are likely to get worse before they start to improve. While the brain can recover from remarkable levels of damage, it will probably never get back to where you were before diagnosis and treatment.’ Then he hit me with the reality of the situation after I had joked with him about becoming the next Secretary General of the United Nations or the Prime Minister or Leader of the Commonwealth. ‘Archie you need to lower considerably your expectations for future employment. Perhaps you should start with something particularly gentle and try and build it up gently from there. Try volunteering in a charity shop for a couple of hours a week at first and see where you can go from there but most importantly understand that life will never be the same again.’ I was clearly distraught by the very concept of being stuck in this straight jacket of cognitive dysfunction, at being too much of a health and safety risk to be able to be trusted in any sort of a work environment without close supervision, of never knowing from minute to minute when the next cognitive seizure was to strike. On a train, on a bus, or on the street, and where would this degradation in my cognitive function stop? How bad was it going to get? Would this beast now drive me downwards, closer and closer towards becoming the cognitive and motor function vegetable that had been predicted by the wold leading expert back in 2014? Since diagnosis people had been calling me courageous or even incredible for taking the fight to the beast. Perhaps the presumption was that as an Army Officer I had some residual courage left over from service, but the truth is that I only just got into the Army and eventually commissioned by dint of hard work and determination and that I have only managed to beat the brain tumour by dint of hard work and determination. So I am nothing special. I am not superhuman. I am not a miracle. I am just scared. Shit scared of a life without purpose, a life without meaning, shit scared of being remembered as the man who couldn’t speak, who couldn’t talk, who wore nappies and cried and screamed in torment at himself within the prison in which he was trapped, terrified of living a life that was not a life. It was that fear that drove me on to success against the beast, and it is that fear that drives me on further. I have told before of a Section Commander who I had been chastising for leading his men on a reckless action in an exercise in which my Platoon were pinned down by enemy fire and we were searching for ways out. His action would have undoubtedly saved the lives of many but risked the lives of more in the process and the Company HQ was cooking up a plan to save us at much reduced odds. So Corporal D’s impatience could have cost us dear but his response rings true to me now. ‘Sir!’ he exclaimed and with fire in his belly continued, ‘it is better to die doing something than to die doing nothing!!’ At the time I thought this an incredibly crass statement but take solace now from the sentiment he intended. I was told ‘never’ once before. That I could never, shrink, kill or cure this tumour, but it would appear that I have. Now I have been told ‘never’ again. That I will never regain my cognitive capacity so I left my brilliant Neurologist’s office with determination and the same fire in my belly that Corporal D had. I wasn’t facing death, but to me it was as if I was facing a living death so I resolved that I am to look this new beast in the eye and take the fight to it once again.
The beast must have read my mind because the very next day he fought back. He launched a pre-emptive strike at just the time that I was gathering my forces and as I sat at my desk planning my next moves the beast crept up on me from behind and seized me by the hand so tightly that all feeling, motor function and sensation left the hand completely. My hand was now a useless lump of meat hanging and twitching on the end of my arm. Then the beast crept up my arm sucking it of any strength that might have been left before starting to close its icy grip around my neck. I started to struggle to swallow, then to breathe and then the beast started to pound once again on my heart while robbing me of the power of speech and slowly, so slowly my sight started to close in on me. I wanted to call for help but couldn’t, I wanted to go for help but couldn’t. I could do nothing but sit at the desk and groan quietly in pain and panic as this beast crept over me. Allie came through to the office sensing that something wasn’t right and just as she did the beast ran, suddenly left me, but not completely. The beast had left me with residual weakness and poor control of my bodily functions. He had left me so very frightened of my future because just then, there was no way in which I could have been counting money or talking to customers or doing anything other than being a liability. I couldn’t even volunteer in a charity shop. I realised that I was a complete liability and was likely to remain so for quite some considerable time. This was not epileptic, there were none of the metallic tastes and smells that hallmarked my epileptic seizures; this was the beast of neurological dysfunction in full disruption mode. I couldn’t talk, think or see properly and was now very weak but I knew from my fight with the tumour that I had to achieve a small victory. I had to put my boots on and, no matter how weak, go for a short mile long walk, further if I could. I went and as I walked I forced my brain to focus on learning the poem I had been committing to memory line by line, day by day. It took many many false starts but slowly but surely ¼ mile by ¼ mile I managed to force the brain to recall the poem that I had learnt so far. I returned home feeling stronger and rather pleased with myself.
But I couldn’t rest on my laurels because on Friday evening, as we sat having a wonderfully relaxed and entertaining evening with friends at their house so the beast started to creep up on me. He was gentle at first, perhaps even toying with me like a court jester. I started to bite my lips, my tongue and cheeks as I tried to eat. Not hard, just little nibbles hard enough to make me jump slightly and concentrate on what I was eating, but then as I tried to talk, so the jester got bored and the beast returned. As I talked so my mouth and lips became heavier and less malleable and speech became increasingly difficult. I was having to concentrate really hard in order to form words and started to sound like a person with learning disabilities again. My hand started to fizz and locked itself into my chest again and my head started to bob like a person with a muscular disability or mental illness as I fought to swallow. Every swallow was a battle and even though the food was delicious and beautifully cooked, my body was deciding whether or not to reject it. I started to feel increasingly nauseous and my mouth started to become increasingly difficult to shape into words and my hands started to struggle to use a knife and fork. My face and legs started twitching gently and so subtly that only Allie really noticed this creeping beast. She held onto my hand tight to reassure me as I sat now in silence fixed in the evil gaze of the beast in my head that was refusing to let go. Then I started to yawn completely uncontrollably and so terribly rudely even though the evening was anything but boring. We were having a wonderful time until the beast got bored. It was time to go and our hosts so graciously understood the pressing need so after quick farewells we were so very suddenly out the door and into the car. Now, as Allie drove us home, each time I yawned the beast would spasm threatening to dislocate my jaw and forcing me to exclaim in pain at each and every jaw-locking spasm. Then once home and changed and ready for bed the beast buried the ice pick deep into my head. The headache was so bad that it felt as if it was trying to cleave my right temporal lobe from my frontal lobe yet the lobes wouldn’t budge so the beast just hung on to the ice pick and pulled and pulled and pulled with each excruciating pulse of pain threatening to bring the entire nights tea up from the depths. This was a worse pain than anything that I had experienced before and no matter which way I lay or what I put on my head or what painkillers that Allie gave me to swallow, nothing would touch it so I spent the night lying there and wondering whether or not this was it, whether or not this was more than a headache or a migraine. Was this a brain bleed or a stroke? How far was this beast going to take me this time? I knew not and could register little else than the light finally creeping into the bedroom from the dawn and the fact that I could hear nothing other than the roaring of an enormous and high pressured waterfall in my ear. I could not perceive the tweeting of the dawn chorus, just total silence except for the rushing of water until the radio alarm came on. I sat slowly in bed, unsteady and unsure of my next move. But then when I tried to hear the radio news I realised that the beast was a thief. He had stolen my hearing but the jester had clearly had an input too because he had left me with an echo from the Daleks of Dr Who fame. It was subtle and almost hardly noticeable at first but slowly, over time, started to develop into a metallic and robotic imitation of whoever was speaking but just a few milliseconds behind the actual voice, making understanding of the spoken word almost impossible. To top it all off trying to listen to an electronic implement like a radio or television was impossible because that was joined with a most extraordinary pressure noise a little like travelling in a train at speed past another train playing in what sounded like both ears whenever an electronic piece of equipment was listened to. So as I sat in church on Sunday morning after a 20 minute walk to try and shake off the post seizure hangover, I had to try and listen to the service and the sermon being given over the microphones and speaker system with fast trains passing each other and the wowwowwowowowowowowowowowowowowowo of a didgeridoo playing background noise to the sounds of the Niagara Falls and then to make matters worse the first hymn was announced. When the organ erupted into life it was like a clap of thunder and when the congregation started singing I couldn’t join in. The congregation became like a chorus of those little tiny high pitched mice from Bagpuss, only they couldn’t all sing in tune. So I found myself stood in this beautiful church next to the Niagara Falls with fast trains rushing past while somebody played the didgeridoo in a thunderstorm surrounded by a thousand little mice singing a familiar hymn. This was bad enough, only to find that not all the mice could sing, and some were high pitched male and female voices and some seemed to be in tune, but many not so and I had no idea which note to try and follow so could not sing for fear of being horribly out of tune, so instead just stood and mouthed the words as fear of the future without purpose drifted in like fog off the sea while fear of being trapped in an ever-tightening strait jacket of mind games with this beast loomed larger. But Allie knew I was battling something so invited me to join her for prayer after communion, off at the side, with a friend of ours in the church. I had nowhere else to go with this beast so agreed and we went. I could, of course, hear nothing of the prayers but knew our friend to be wonderful so just prayed that I agreed with everything that our friend was praying and then the music stopped. The torrent and torture in my ears kept going but our friend remained with us and prayed further with us. I felt hugely comforted by these prayers but was saddened not to experience an immediate healing but had faith that it would happen in time. And later in the day it did indeed come in time. Slowly, as the day progressed, my hearing returned and is restored to normal. Just the normal tinnitus which thousands suffer from. Permanent but manageable.
Ironically the sermon that morning was about taking time out to listen to God and how in so doing one can find one’s role in life led by God’s guiding light in times of challenge and further more Allie had received by email a wonderful reflection from a friend of hers that was written by Thomas Merton
“My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think that I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does, in fact, please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore will I trust you always, though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.”
As we returned home from church I reflected on the experience of the last 24 hours, the prayers from Shirley and the extraordinary timing of the subject of the sermon and the reflection.
While I was in many ways, piece by piece, slowly crumbling into the sea below, I could of course be shored up: that while I was told that I could never get my cognitive function back again I had been told never once before. That I could never shrink, kill or cure the brain tumour, but now it has completely disappeared. So I have been told never once again but I will ensure that no medical technician never ever says never to me again. I can shore up this crumbling mind but it will just take an awful lot of hard work and an awfully long time. While I might not be able to become the next Secretary General of the UN or the next Prime Minister or the next Head of the Commonwealth, I should see this moment as an opportunity. If I was fit and well I would be sailing full steam ahead towards a new career and direction, working every hour that God sends to try and forge a new career after a 6 year treatment gap since leaving the Army. I would probably have little balance in life and I would probably have taken the first job offer that came along and likely therefore not be particularly happy in the new life I was leading. But with this new beast to beat such a life is still a long way away so I have been given two gifts. Firstly the gift of life itself and with my ½ pension and war disablement pension which, while they will never make us wealthy, they do provide enough to allow Allie and I to be able to feed, clothe and heat ourselves which means that we have enough, which also means that we also have the gift of time, which is a wonderful gift, because the gift of time allows me to make the gift of life, no matter how broken that life might be, into a gift that can continue to try and improve the lives and life chances of so many more people, but I just have to find a way to do it.
I have, through a long and tortuous process of trial and error, developed a balanced daily lifestyle that I am absolutely convinced has helped me to beat my tumour by reinforcing the marvels of modern medicine, but it has also helped me to stave off the threat of respiratory, circulatory, and musculoskeletal conditions post such a long period of treatment, but is also helping to prevent the return of the brain tumour or the surfacing of any other cancers that will at times try to inflict my body while also helping me to stave off the risk of diabetes and other conditions associated with Alzheimers. So I want to encourage as many people as possible to start to follow my balanced daily lifestyle, day after day in order to prevent horrible disease from happening in the first place or, if diagnosed with disease, to significantly improve the outcomes of treatment. Yet few are listening.
I want to raise as much money as I can for the Disasters Emergency Committee in order to improve the life chances and help rebuild lives at times of disaster and in order to do so I need to get as many people as possible to sponsor me for just £1 per month. There are 65 million active personal current accounts in the UK right now. If I could convince just one percent of their owners to sponsor me for just £1 per month I would be raising a whopping £650,000 per month. Yet few are listening.
Nobody wants to hear the bleatings of a guy with no initials or titles in front of or after his name. I have wisdom born from experience, trial and error, but no piece of paper proving my credence. I am advocating the benefits of no lotions, no potions, no diplodotions, just reminding us all of what we had already discovered back in Victorian days but forgotten. That brisk walking coupled with the eating of a strategic balance of fruits, vegetables, protein, calcium and carbohydrate sources focused on preventing and beating disease in reinforcement to the marvels of modern medicine will help prevent and beat disease. This is nothing new but with the nation’s health buckling under the pressure of our poor lifestyles, we so desperately need to be reminded of it and encouraged to actually do it, but few are listening so I need to see my disability as an opportunity.
I need to get my cognitive capacity back so I am going to:
- Write a book, slowly, so very slowly, about my battles and successes through life to inspire and encourage many while providing hope for those that need it while trying to build up my ability to sustain myself at work for hour after hour, day after day once again
- Learn to play golf to train my brain with discipline and concentration and cognitive and motor function and see if I cannot inspire the golfing community to sponsor me for the DEC through my efforts.
- Learn to juggle to train my brain with discipline and concentration and cognitive and motor function.
- Learn to play the pipe organ to train my brain with discipline and concentration and cognitive and motor function while also hoping to inspire many from the faith community to sponsor me for the DEC through my efforts.
- Learn to act through attendance at drama courses in order to train my brain with discipline and concentration and cognitive and motor function and communication skills while being able to function in a loud, busy, fast moving and ever-changing environment full of people for sustained periods of time.
One of these directions of approach on my retraining and rebuilding journey might suddenly provide for future employment opportunity in the future, but I hope that right now following me on this new battle to beat the beast will encourage you to sponsor me for the DEC through my efforts.
If you know of a way or of a person with which you can help me to raise awareness of my battle within the golfing, acting, musical, writing and banking community, do please get in touch. I need as much help as I can get to build this platform from which I can be heard and from which I can try to save lives, and if nothing else please sponsor me and encourage your friends to do likewise.
Thank you
Yours aye
Archie