This year, courtesy of the most excellent care that I have been receiving from the NHS I have spent many days being tested by and advised by my many ‘gists’. I am quite sure that a song could be written about my many ‘gists’ much along the lines of the old song about the chemical table of the elements. I have a most excellent Oncologist, Neurologist, Endocrinologist, Neuro Psychologist, Otolaryngologist, Urologist, Podiatrist, Orthodontist and Ophthalmologist and have much to thank them all for but sadly, as you know, my battle with my beast of a brain tumour and all the resultant damage left behind by the tumour, my treatment and each and every one of the more severe epileptic seizures is far from over.
So it is not unexpected that the run up to Christmas held many unpleasant surprises.
On Sat 15th December we were the guests of one of the choir in the Jubilo concert in St Serf’s church Inverleith. The music was powerful, beautiful and extremely well delivered so I was enjoying the concert very much and trying hard to ignore an annoying light pulsating between hard and soft light emanating from a dying bulb in an upturned flood light serving as church lighting. Eventually however the pulsing started to interfere with the wiring of my brain and so bright was it that even when closing my eyes or looking in the opposite direction, the frequency of the pulsing could be seen, and over time eroded the stability of my mind. By the time we broke for the interval, I was struggling to remain steady on my feet and needed to hold Allie’s hand to be guided through doors and the crowd without incident. Through the second half I developed quite a violent irregular involuntary twitch in my left arm that would just shoot out and up to straighten in random directions to the point at which I had to try and lock it into my right armpit, which didn’t work, before then sitting on it to control it, but which then led to a rather unkindly twitching and bobbling of the entire body to the end. The remainder of the concert was lost on me as I did all I could to prevent becoming an unwelcome distraction to the other concert goers and especially our friend Jen, who was sat to my right, and as a nurse, keeping a very close eye on me to help Allie just in case. By the very end I could hardly stand and other friends at the concert offered to help Allie get me to her car because they could see that I was struggling. As our wonderful friends fussed around me to help Allie in anyway that they could, I could do nothing but sit head down trying hard not to establish eye contact as the shame and frustration of my random condition would likely have given me to cause to cry. Certainly, by this time, I could hardly utter an intelligible word without Allie acting as translator, so sat head down with my tinnitus screaming in my right ear and the post concert celebratory voices echoing loud and hard in my left ear, round and round and round and round in my head, incessantly on, and on, and on, getting louder, and louder, and louder, until eventually overwhelming my already tired brain to the point at which I wanted nothing more but for the ground to swallow me up and spit me out somewhere else, rather than having to suffer the ignominy of trying to stagger out of the concert hall like a drunkard having drunk nothing but a cup of tea at the interval. The crowd thinned out and it was eventually clear enough to leave and once again our wonderful friends did all that they could to help, knowing that I was not at all drunk. It had sleeted and frozen as we were in the church, so brave Allie had an even greater challenge of trying to get me to the car in ice and the footpaths were so narrow that there was only room for two. So together, braced together as best we could, we staggered out into the wintry darkness and made our way along the dimly lit footpath using the church and garden walls and hedges as icy cold but solid stabling points. We made it, and Allie somehow managed to get me into the passenger seat of the car without incident.
On Sunday 16th I woke with a post seizure hangover and struggled most of the day before being forced, by dint of my eyesight becoming increasingly fuzzy and out of focus (often a prelude to a SMART attack or neurological misfire), into taking an afternoon nap to try and stabilize myself prior to the afternoon carols by candlelight in St Pauls and St George’s Church. Success, it was a good night enjoyed by all.
Monday17th through to Thursday 20th, our meeting with our Goddaughter Madeleine and her boyfriend Tom , Allie’s birthday treat as a meal out at the Dome in Edinburgh, our church group Christmas social evening, and lunch with dear friends Malcolm and Liz McGregor, went well with the exception of increasingly irritating spikes of pain in my right ear, then down through my cheek, and into my jaw and teeth, but nothing along the lines of the previous neuralgia pain, so we just assumed it to be extra deep spikes of neuralgia pain with the worst of the pain being tuned out by my Amitriptyline happy pills.
Friday 21st December brought some wonderful news followed by some devastating news. I received the results of the two hours of Neuro Psychological tests that I had taken 3 weeks previously. The purpose of the tests was to try to find out what vestiges of cognitive capacity I have (strengths) and what cognitive capacity has been eroded (weaknesses) in order to fine tune my attempts to retrain and strengthen my brain while informing my neurological team as to the art of the possible in order to guide their advice. The good news is that I performed far better in the tests than my team had expected after so much treatment and damage, so the results were a pleasant surprise and on face value hugely reassuring. Then we broke down the results and applied them as dots on a chart of mean scores for a healthy average middle-aged man. I was scoring right in the middle to higher third quartile for many of my tests, so the smile crept across my face, little by little, dot by dot. One or two of my tests were right down in the bottom of the last quartile, the most pronounced one being my visual recognition, my ability to recognise faces, and that explained why I would frequently and rather frustratingly fail to recognise people that I knew really well. But when she finished plotting my results I asked the good Dr why it was that I would struggle so much, struggle to see clearly, struggle to think, struggle to speak, struggle to coordinate movement and struggle to stand after just 40 minutes on a computer or 5 minutes on a mobile screen, and why it was that so many of my scores that were in the high average, so were technically neurological strengths, were also in areas in which I would frequently struggle?
Clearly, despite receiving the worst news from my Oncologist and Neurologist after my previous questions, I still hadn’t learned to stop asking questions, so, true to form received the answer I really did not want to hear. My Neuro Psychologist confirmed what I had, for a long time suspected, but was refusing to believe. While I had a lot of good neurological function and was physically fit, my remaining fit and undamaged brain was already having to work at maximum capacity just to sustain me in every day activity essential for the maintenance of life, so if I start to try to fulfil additional function the brain will quickly become overwhelmed, start to struggle to maintain normal running, and therefore start to misfire, leading to the neurological dysfunction symptoms that I experience. Then it became even harder to swallow. While I can continue to try to retrain and strengthen my brain as I have been, I must also understand that I cannot regenerate or grow new brain. What I have remaining is all that I will ever have remaining, and it is already running at close to its maximum capacity so I will have to adjust considerably the way I live and lead my life in order to free up some capacity for smoother running. That perhaps I was trying to do too much, was trying to run myself too hard, so should slow down and do only that which I need to do to maintain my normal function. The good Dr identified that I thought differently and had a lot to offer and with-it capacity for fulfilling employment, but only if I was provided with assistance in my duties such as typing of letters and email correspondence et al needed for the delivery of my job description and only if there was an understanding of the need for regular breaks through the day to keep the batteries topped up for critical events. So in other words, with a PA and a chaise longue with an understanding that I must use it, I could indeed perform a useful role in work. This was welcome news but on reflection, the very idea that a potential employer would choose me, with a requirement for an additional employee in support and regular breaks at sometimes rather awkward and inopportune times, when there were perfectly capable and undamaged candidates available, seemed to be well beyond the realms of plausible, possible or probable. I struggle to see that I will ever truly be employable. Perhaps the treatment team have been absolutely correct from the very start of treatment. Clearly I had what seemed like an even more insurmountable mountain to conquer if I was ever to lead a productive life in work again, and as if to confirm my suspicions the next few hours brought further anguish.
All day with my Neuro Psychologist my ear, cheeks, jaw and teeth had been throbbing away and I had presumed it to be more Neuralgia pain bubbling up through the screen of anti-depressants taken to turn down the volume on the Neuralgia pain. However, as the day progressed, I started to notice an increasingly pronounced sideways overlap of some molars to the rear of my right side of my jaw which meant that whenever I tried to close my mouth, my teeth would clash and try to push each other across and away from each other with significant pain. A lump started to develop on the right side of the gum by those molars and so the pain increased until I could ignore it no longer, and asked Allie to take a look. She immediately identified what looked like a clot with black spotting at the top of the gum beside a molar and could see a molar physically out of line. We called 111 and discovered that there is a dental version of 111 which, after some questions, booked me in for an emergency appointment with an out of hours Dentist in the Chalmers Street Dental Centre. Clearly this was not in our Christmas plan.
The morning of the 22nd was supposed to have been a calm and relaxed morning making packed lunches for the move to go and pick up the children before heading to Motherwell for the Red Hot Chilli Pipers Concert. James, had struggled with the impacts of the brain tumour on me, his father, who had, in double quick time been reduced from a man, a recently retired and still fit and strong Army Officer fulfilling the role of ‘Daddy Day Care’, while attempting to set up a not-for-profit to reduce the cycle of re-offending in our young disadvantaged and disengaged young people, into a weak and uncertain shadow of his former self who tried so hard to keep his chin up, a smile on his face and a positive outlook through every seizure, every drop attack, every SMART attack, every neurological twobble and every bit of bad news, but failed to convince his children that all would be well. Despite living with the pain of the loss of his healthy father, swapped out for this frail, stammering, stuttering, twobbling shadow of his father who at times could not even speak let alone stand, and the fear of his father’s demise, and the uncertainty of the whole families’ future, James had re-engaged at school, was receiving fewer and fewer demerits and was improving his scores in his school work. Then to top it all he was made the junior pipe major in the Doune village pipe band. He had pulled up his socks, stuck his chin up and chest out and seized opportunity in both hands. I was so pleased for him that I wrote to the Red Hot Chilli Pipers to see if he could come and meet the band and see a show. I had never really expected the answer to be yes but it was, and over time we received VIP passes to go and meet the band, and tickets for great seats in the show. We were excited and I was so very thankful for their generosity, but that morning our plans were severely tested. Packed and ready to go I reported for my early emergency dental appointment. The team were fantastic. I filled out the medical forms and then talked the dentist through how my Neurological Dysfunction might manifest itself. How I could all of a sudden snap my mouth shut with some force and have woken myself several times at night having done such a thing. How I can twitch and jerk, shake, struggle to swallow and struggle to speak when the dysfunction rolls in, how I might suffer an aura which could take me somewhere else completely, and how I might suffer random, harmless, but intense pain. The dentist was clearly a calm and experienced hand. His team had been listening intently too so I was soon on my back with a suction tube under my tongue to relieve the need to swallow while the Dentist had a look, then took an x-ray, then looked at it then talked me through what he saw and the need for root canal surgery today in order to save a dying tooth. It turns out that at some point recently, perhaps during one of my sudden snapping shut of my teeth episodes, I had given cause for compression damage to the tooth much akin to a form of a blunt force trauma. I immediately checked to see if I would be fit to take James to the concert that evening. He smiled and reassured me that I would be tender but able to go, so we agreed to continue with the surgical option. Perhaps in response to the inevitable anxiety about the root canal surgery I felt some form of a neurological dysfunction twobbling away in the background, so I warned the dentist but thankfully he was content to continue. I lay back, the nurses put some eye protectors on me, placed the suction tube back into my mouth and laid down two trays of implements of torture. One on each side. I opened wide and watched the anaesthetic needle come in, felt it inject four times then felt nothing more in my mouth. Next the dentist’s hands were coming backwards and forwards with various tools and implements; I could hear little over the noise of the dental implements so just concentrated on keeping my mouth open, and my body still. Without warning my left hand shot out and knocked hard into the arm of the chair just below the tray of tools. The dysfunction came in with some force but nobody flinched. I shoved my left hand under my buttocks to keep my arm still and concentrated hard on keeping my head still and my mouth open as my left arm twitched and jerked to my side with my hand under my buttocks. Then my buttocks started to twitch quite vigorously on both sides and then my legs and before I knew what was happening my entire body below my neck was in some form of spasm. I kept my head still and my mouth open as the dentist’s hands worked vigorously up and down in an action that looked as if he was pumping, with some force, a hand drill. My eyes were fixed wide, my body spasmed and tears rolled down my eyes. Not tears of pain, just tears of fear and frustration for my future prospects when I couldn’t even survive a simple dental operation without spasm. Then my spasm dribbled away to final little twitches and before I knew what had happened the dentist had finished. I was allowed to sit up to take a sip of juice to swill my mouth only to discover that due to the anaesthetic, I couldn’t properly close my lips, so half the juice squirted out the sides and over me and one of the nurses. That lightened the mood and soon I was receiving instructions on how to look after the tooth for a few days before trying to chew with it in order to let it settle and heal. He was confident that the operation had been a success and the tooth saved. A review was to be booked with my dentist in the New Year and then I was given some antibiotics just in case.
I was now in remarkably little pain compared to what had been suffered previously and the concert went really well. The Red Hot Chilli Pipers were wonderfully gentle and encouraging with James while also letting us stay to watch them in their pre-concert warm up, tune and pump up before heading out onto stage. The concert was a hit and over the next few days of Christmas with Mum and another 12 of my family my tooth healed with no signs of infection.
Christmas was a wonderful time to catch up with and spend time with my Mum, Sally and Stepfather, Gam, my youngest sister Isla, brother-in-law Rob and nephews, Archie (3) and William (18 months), and my youngest brother Harry and his wonderful new wife Rosie, with my darling wife Allie and wonderful children Heather (17) and James (15), as well as my lively nephew Elliot (19), and Uncle Jeremy and Sue and Mum’s delightful friend Morag, all squeezed into a modern 4(ish) bedroom house. Thankfully we all get on extremely well. The children were wonderfully understanding about sofas and mattresses in store rooms as beds and we were all very understanding, patient and generous with the rota for the shower in the morning, so we were set for a fabulous 6 days together taking it in turns to sit on the floor. Mum, as a fully trained Cordon Bleu Chef, as always fed us like Kings, and the only way to get in the kitchen to help with the washing up was to create a diversion that would keep Mum occupied for long enough before leaving a little pile of immaculately clean pots, pans and utensils for Mum to put away. Christmas day was started with military precision according to my plan given in a set of quick shower orders the night before in order to get all of us, children included, out of the door in good order clean and fed, without argument, in time to get to church at Isla’s church in Tewksbury at 1000hrs. The service was wonderful and all was great until the lunchtime by which time I was starting to feel a little bit wobbly and off balance while struggling to coordinate my hands and struggling to speak normally. Allie took me upstairs to unplug and doze for a 15 minute catnap in order to recharge my batteries. It worked and we exchanged presents before the Christmas evening meal of the works. The food was great of course and the conversation hilarious. Many times I was in hysterics which would of course set off the children which would of course keep me going as, having lost a lot of control over my emotional cortex due to damage caused by the tumour, I can really struggle to stop laughing once started. Allie and I had given James in his stocking, a set of ‘pick-up line’ pencils which were perfectly clean, but put them in the hands of a 15 year old opposite his 34 year old Uncle and the conversation would inevitably start to deteriorate. Innocently at first it started with James reading the pick-up lines on the pencils, “Do you come here often?” ‘That’s silly, that’s never a pick-up line. It would never work!’ and then the classic “If I tell you that you have a beautiful body would you hold it against me?” because he mis-read it to become ‘If I tell you that you have a beautiful body would you hold it up against me?’ I spluttered on my soup like an old man which set the children and the rest of the family off and I was off with the hysterics again as Mum went a slightly brighter shade of purple and sent instructions from the kitchen while preparing the turkey to keep conversation at the table decent. It was a wonderful evening but sadly the exuberance of the day caught up with me. I once again started to quietly and subtly twitch, wobble and bobble, to twobble, and, as the physical sensations went through me my brain started to slow and with it my speech. I sat, once again, head bowed trying not to catch anyone’s eye as the conversation swept around the table and into and out of my head like waves onto the shore. I could not hold onto any single thought, or string of a conversation, the slightest hint of a thought lingering in my head and it would dissipate as quickly as water through sand. I had nothing to offer. I could not engage in any way with the table, so I tried to just melt into the tablecloth, unnoticed so as not to disturb this happy family gathering as tears of sadness and frustration welled in my eyes. I managed to hold onto them until I felt the weight of somebody’s body on my back. My daughter Heather had noticed so had walked around the table to embrace me in her arms and reassure me. Such a simple act of loving tenderness from a daughter to father was enough to set me off. I struggled to hold back the wracking sobs as they fought to get out. Heather said nothing. Just held on tight from behind and over my chair back, her hold tightening with each violent shake of suppressed sobbing emotion. Allie came and held my hand and over time this twobble slowly eased, then passed.
Boxing day was my birthday and passed without incident other than more fun and exuberance as we took Archie and William for a walk to the park. I spent a lovely few minutes with Allie on the swings before being introduced to a challenging swing around a pole that became more and more challenging the faster that James and Elliot managed to make it go. I just about managed to hold on but never quite perfected the superman pose the family were so baying for as I whistled around the pole and back again. To make a great day even better Mum managed to finish it with the traditional boxing day chocolate biscuit cake that Isla had decorated with some extravagance with smarties.
The 27th saw Allie and I make a wonderful trip to Oxford to meet up with Allie’s sister Jane and her daughter’s Anna and Emily during a Christmas flying visit of friends and family around the UK. We had a wonderful time on the tour of Jane’s old college at Oxford University, exploring the extraordinary almost medieval sights that Oxford has to offer. Allie and I managed to drop them all off for the next stage of their trip, before heading back to Mum’s for a final meal, before travelling back to Edinburgh the following day. It was once again fantastic food and the conversation flowed but soon, out of nowhere came a rather frightening neurological seizure. Quickly, very quickly, I lost all feeling and coordination in my left hand. So much so that I couldn’t actually hold my fork, let alone coordinate any motion to eat. I persisted at first but Allie quickly convinced me to let her help as I achieved nothing but shovelling food off the edges of my plate. Then my tongue, lips and cheeks swelled rendering it almost impossible to swallow let alone speak, but I knew that I must not give in to this beast but cautiously try to achieve what I had set out to achieve, to quite simply eat. The sobs of frustration once again fought to express themselves, and as I battled to hold them back the tears welled, and bizarrely, the sobs of frustration broke through as laughter about the absurdity of this situation, that this 46 year old man, outwardly fit and able was having to have his tea cut up for him into lots of little pieces by his wife. I could use my right hand, so Allie put the food on the fork and gave it to my right to feed myself, which I managed to do without choking by concentrating so very hard on every chew and swallow. Mum hadn’t yet seen such a show of spastic paralysis caused by a neurological dysfunction before. She had heard about them as she would read my posts and had witnessed several of my auras and drop attacks but to see her son, now looking so very much healthier having largely physically recovered from the treatment, suddenly become spastic in front of her very eyes must have been quite a shock. Certainly, once recovered, I had to spend quite a lot of time reassuring Mum and I managed to convince her that I was in most excellent hands in my treatment team of the many ‘gists’ in the Western General Hospital in Edinburgh. That I was being well served by my balanced daily lifestyle and that with my fate perhaps entirely in God’s hands, I was in a good place as despite these frustrating and more frequent than one would like neurological misfires, I was indeed in a wonderful place. I was married to a woman with the patience of a saint whose only desire is for my health and happiness. I have two incredible children who despite having to live the last 5 formative years in the shadow of my prognosis and neurological dysfunction, have blossomed into strong, kind and capable young people with bright futures ahead of them. That I am blessed with life and a war disablement pension that ensures that we can feed, clothe and house ourselves. That while I may now never be able to follow the normal pattern of work I so dearly yearn for, I am blessed with the ability to walk and talk (most of the time) and with a little lateral thinking, God willing, I will be able to find a way to support my family that doesn’t involve driving a car or a computer or any type of screen, because I can’t. But instead involves in some way walking and talking because I can. So 2019 will focus on being thankful for every single day and trying to do what I can, not mourning what I have lost.
