Today was another great day that started with a walk in the ponds. As I walked I felt an epileptic wave come over me. These waves are simply a rapid dose of the metallic tastes and smells with a very slight vibration suddenly appearing in the head and washing over me. I call them waves because they feel like they are crashing over the head before then percolating down and out through the sand away from the body as rapidly as they arrived, much like waves onto a sandy beach as you lie with your head on the sand, just at the waters edge, looking up to the sky. The occasional freak wave would wash over you and away from you as quickly as it arrived taking you completely by surprise. There would appear to be no rhyme or reason for these waves. No trigger, but nevertheless they come as single, random, short lived events. So my mind turned back to the tumour. If I was healed then surely the epilepsy would be calming too. Perhaps I am therefore now overdosing on the anti-seizure drugs. Is it not possible therefore that I could start to explore reducing my anti-seizure dosage slowly, very very slowly but surely down to a nil prescription and partly to explore whether or not I still had epilepsy. I don’t know the answer to that question but It is certainly a question that I must explore at my next epilepsy clinic. By then I will have had the chance to ask how long I will have to stay clear in my scans for before my brilliant oncology team could declare me as healed. I suppose that the bigger question still is whether or not they will ever be able to actually declare me healed.

As I continued to ponder this question I realised that I had forgotten to actually take my anti-seizure medication this morning. I wasn’t long up and still had last night’s drugs in the system so there wasn’t any need to panic. I just had to remember to take them when I got home. That made me smile because there was a good chance. A really really good chance that I would never remember until it was too late. Until I descended rapidly into a seizure. But right now, despite waking half way through the night due to the cold seeping into the flat I felt great. I then remembered that I would probably remember because I had my lists. It was an old Army habit of writing everything down and working off of checklists to ensure that all that had to be done was done and before brain surgery, I was advised to make some checklists. Make a plan of how you organised your day and your life so that I had a handrail to follow all the way back to the old me and old life while also serving to keep me on the path I wished to follow during radiotherapy. During Chemotherapy my short term memory became even worse so I even wrote checklists for actions on Reveille, for actions on returning from a day out such as cleaning boots and water reservoir et al and of course packing lists for any excursions. But they were only any good if I remembered and had the personal discipline to actually look at them. This morning I thought I was firing on all cylinders so didn’t need my list. What happened? I forgot my drugs. So what I must remember to do, is look at my lists when I get back in. That will remind me to take my drugs.

When I arrived back at the flat with another ½ bag of rubbish deposited in the bin I found myself stood in the flat, my jacket off and hung up, my boots off, slippers on, wandering up and down the corridor with my hand on my head desperately trying to remember what I was supposed to remember. At such occasions I eventually remember to turn to my lists. I turned to my ‘just back in the flat’ list and at the very top is one very simple word. DRUGS!!! That was all I needed. That was it. That was what I was trying to remember. So I went to the kitchen, took out the pill box, checked my watch. Today is Saturday. So I took out the tube for Saturday and sure enough, there was the morning’s dose of drugs. I took them and as I drank some more water with them, I thanked myself for the insight I showed by writing DRUGS!!! at the very top of nearly every list. So now it was time for my Upper Body Circuit, which I also use as a form of memory training. I set up the pull up bar, the sit-up mat and the chair for reverse dips and shoulder presses. Retrieved my water bottle with a slice of lemon. Inserted one of the four wonderful CDs of modern worship songs my sister Isla made for me at the start of treatment and started work. First was to identify off of my circuit list the first 3 exercises and then try to remember the pull, push and abdominal exercise to be done in sequence. Start on the pull ups. Only two this morning. Then press ups. Only eleven. Then military sit ups. Again only eleven. I remembered that sequence fine. But then I start to rush to keep the heart rate up as I progress through the circuit and forget what’s next so have to get back up off the floor and go to the list to remember what was next again. Up down up down up down is a very frustrating sequence of events but it does at least mean that I get a good quality workout from the circuit that I designed many years ago in the Army. In fact I have done it so frequently that I am surprised and frustrated that I am yet to actually remember the sequence without a list at all. But rather than get frustrated when I loose things from my head which were there only a minute ago, and can only remember with the help of a list, or when I completely forget how to play a small bar of an organ tune that I know so perfectly well. I instead have to be very thankful that I had the good advice and foresight to write these lists and that I can see to read the lists, that I can walk and enjoy God’s glorious creation in all its marvellous technicolour and that slowly, very very slowly but surely I am managing to train the brain and while no way near perfect. I can notice in myself improvements in my memory and my cognitive performance. Just on Thursday at the meeting of the beat the beast challenge unincorporated charitable association my wonderful accountant Elizabeth remarked how well I looked and how I was speaking very noticeably much better. That I was no longer slurring my words. I should also of course be very thankful that my long term memory is still intact. All those memories and the wisdom garnered from life’s experience, from life’s successes and failures still intact. It is all gathered in dusty filling cabinets in the brain so it can often take some time to sift through the drawers to find it, but using, of course, my cognitive filing list, I do most usually find whatever it was I was looking for after an awkward silence as I sift through the dusty drawers. I am in fact getting used to those momentary flutters of panic as I find my brain tumbling in a complete vacuum of nothingness as I stare down a deep bright white hole of nothing trying so very hard not to fall in as I search frantically for that vital memory for frankly, anything to hold on to in the blinding white light of memory loss. I can visualise bits of old browning paper fluttering around the filing space in the brain after the frantic search, before being gathered and refiled. I only have momentary glimpses of the horror and frustration of memory loss but it is enough to convince me that I must continue to do all I can to repair the damage done and prevent it getting any worse. Right now though I sense a slight improvement.

James was playing Rugby this morning and Heather was wanting a lie in. Cousin Anne was in and I thought that it would be fun to bring Heather over to say hello. I called Heather at 0945 and got a rocket. Dad I asked for a lie in! I realised my mistake. Heather is a teenager. A lie in can last most of the day!!! An apology from me and a promise of lunch afterwards was enough so Heather came over for 1115. We had a lovely time with Anne while Heather and I munched banana cake and drank tea while catching up, but far too soon it was time to head over to make lunch. No surprises it was going to be a poached egg on toast with raw veggies on the side and on the way in we stopped off to see my downstairs neighbour Margaret who at 93 inspires me daily with her smile despite her failing strength. She was already eating lunch but welcomed the company. We had a great chat with Margaret who was on top form and full of humour. Margaret even told me how dishy she thought James was but when. I suggested that he took after his father. Margaret quick as a flash said. ‘Oh No. You’re okay but. James?’ And then faked a swoon into her chair. It was hilarious and a wonderful moment to share with Heather.

After lunch Heather was singing on the keyboard while I washed up. I was hoping to catch my other downstairs neighbours Bob and Margaret who at 85 seemed to spend so much of their time looking after Margaret opposite or worrying about me. I spotted them through the window as they walked back towards the flat so shot downstairs as Heather continued singing. When I caught them Margaret commented on my Piano playing to which I had to admit that it wasn’t me. It was Heather accompanying herself as she sang. It is a beautiful sound. ‘Would you like to come and listen.’ I asked and to which they both replied ‘Yes please’. ‘Right let’s go and sneak up and surprise her.’ So we snuck up the stairs and in stealth mode I slowly opened the door to hear Heather’s voice drifting through the corridor. Bob forgot that we were in stealth mode so started talking, but being a little deaf it was more like shouting so our cover was blown. So we wandered in and Heather delighted in seeing Bob and Margaret behind me. I made the tea and finished washing up lunch while Heather sang to them both. I joined them and once Heather had finished it was my turn to play some organ tunes for them. I sat, turned the pages of my tutor book. Found the tune I knew well, liked very much and wanted to play. All started well at first but very quickly I hit that gaping deep hole of memory loss with its blinding white light. The panic started to flutter up through me as I struggled not to fall into the hole and instead find a way to make the tune work. There was nothing for it. I stopped and explained to Bob and Margaret why it was I had started to learn to play the organ. To retrain the healthy left side of the brain to beat the cognitive and motor function degradation that the tumour was threatening, and that it was in moments like this that I had to sit here, be incredibly patient, and try and play the tune again, and again, and again until I eventually get the brain to function. To force the brain to function. To find another way to function. I didn’t feel that this was a cognitive issue right now. It had none of the hallmarks but did have that sense of being a memory issue. I needed to train the brain to make the memory function properly so there was nothing for it. Now was the time. I apologised profusely and then with their blessing I went to play it again. It didn’t work. I tried again. It didn’t work. So I tried again and this time it went really well. I had remembered how to play it so with a whoop of joy I finished the tune. Success. Sadly it was time for me to go to catch a bus. I was heading to Edinburgh for a most excellent meeting tomorrow morning about which I will tell you on Monday. So Bob and Margaret left, followed by Heather after a huge thank you hug to Heather for providing so much happiness to Margaret and Bob and Margaret and of course Me.

Yours aye