Recently, I have had incredibly encouraging news on the chances of beating the odds against the tumour and yesterday, when getting a full review of my physical health after brain surgery, radiotherapy and a year of chemotherapy, I learned that all my hard work, guided by my strategy to beat the beast had left a 44 year old man with the metabolic age of a 29 year old! I was starting to really believe that some day soon, I would be strong enough to sustain myself in the day to day demands of a busy job, that I might be able to lead a normal life and play my part in the world, make my mark in a proper job. I missed the challenges of a working day in a challenging and dynamic job, and the camaraderie of a team. In fact I craved it and started to believe that, perhaps, this was a dream that I could make a reality, that having beaten the beast, I could not only prove it, but also recover the brain sufficiently to get life back completely. To be normal again, to be able to cut up my brilliant disabled entitlement cards for the bus and the train that have enabled my activities in beating the beast, to get my driving licence back; to be able to get off the war disablement pension (benefits) and bring back a normal wage each month. I could almost see it, almost smell it, almost touch it, the delightful rewards of just feeing normal again.
So this morning I had a good 2.4 mile walk followed by a healthy breakfast. Then we went to St Paul’s and St George’s church and learned of the true value and virtue of courage versus the disadvantage and disabling effects of fear, before seizing the opportunity to get to know some more people, while beating the drum for the challenge. I felt great and back at Allie’s flat in Edinburgh started to look in some detail at some administrative tasks on various excel spreadsheets. After the cognitive demands of good conversation in great company after church, I was a little tired but ploughed on. We had lots to get done to move various projects we were working on forward, and in the end needed to phone Mum for some advice, to draw on her wisdom acquired after many years of life. We talked and laughed for 10 minutes before I then got back to work with her most excellent advice fresh in my mind. After 90 minutes working on the spreadsheets I started to feel a little odd. I wasn’t sure what it was but I was off balance, I was becoming clumsy, struggling to drink from a mug without spilling it, struggling to find words, so guessing that I was being cognitively challenged went for my organ music in order to sit at the keyboard and force the brain to function. This was the time to train the brain, when feeling at my most vulnerable, when the brain was struggling the most, but I couldn’t find my organ music. I had everything packed and ready to go back to Doune but the music wasn’t in the satchel. I wandered about the flat trying to think of places that it might be as Allie continued to cook lunch, but all I could do was get to a room and then stop and stare vacantly into the room , then into another and into another until back in the kitchen. I saw the satchel and went back to it. It was in there the whole time. So I grabbed it and went quickly to the keyboard. I sat expecting the worse, picked my hardest tune and went for it. I played it brilliantly! I was stunned but pleased because it meant that this was highly unlikely to be the brain tumour challenging my cognitive and motor function. We couldn’t find the beast of a brain tumour anymore anyway so it had to be something else.
It was lunchtime so we sat and ate a delicious salmon with mango salsa. As we ate we talked but as we talked I started to feel a little odd. I ate a yoghurt with ground flaxseed and a tangerine and then it was time to tidy up. I popped in a couple of brazil nuts. Started to try and wash up then realised that I had to make a packed lunch for tea back in Doune. So I started on that as I had to leave relatively early to catch the last Sunday No.59 bus from Stirling back to Doune. This sort of fast moving day would have been one that I would have previously enjoyed but today was different. Suddenly I needed the loo which was most unpleasant but got there in time and once finished and all cleaned up, went back to the kitchen to finish making a packed tea. Allie had started on it and asked me to dry up the lunch things while she did, and as I dried up the fog rolled in. It was as if I could feel the wind rustling my hair; I could hear the wind whistling through roof tiles; I could hear the stays of a small boat clanging against the mast; I could hear the call of the seagulls; but the more that I could hear, the less that I could see. I was peering through a deep fog and the only way that I could see anything was to concentrate hard on it. So hard, in fact, that it became all that my senses could cope with. I was in the same room as Allie yet felt so very lonely as I focused so very hard on picking items up and drying them and putting them away properly. I hung up the tea towel and knew that I was going to have to leave shortly, so had to sort out my in tray that I had brought with me to have a go at, but hadn’t yet managed to tackle. I stood and through this thick fog stared vacantly at envelopes trying to decide what it was and what I needed to do with it. A slight chill in this breeze washed over me making me shiver briefly. I started to make three piles: a shredding pile, a filing pile and a recycling pile. I concentrated hard trying to get as much done as possible, but then discovered that I had mixed up my piles, so through this thick fog I stared as I resorted the piles. Just as I finished, I felt a hand at my elbow that pulled me to the side of the table at which I stood, before leading me out to sit me down on the side of my bed before sitting next to me. I peered at Allie through the fog and saw the look of concern in her face and tears welling in her eyes. ‘Archie, why are you shutting me out? What’s wrong?’ I of course apologised to her and tried to understand what she was talking about, but as we tried to understand, the fog started to thin, slowly, the wind died, and the fog drifted away. I still felt closed into a band of fog but could at least see the hand in front of my face more clearly. I could see Allie more clearly. I could see that I had shut Allie out. Unintentionally but in my deep, deep concentration to get something done through the fog, and to not give in to it, I just closed down all my senses. This wasn’t good but it was time to go. I couldn’t miss the last bus. Allie couldn’t let me go like this, frightened that I would make a mess of the journey and catch the wrong bus to the station or the wrong train at the station. Allie insisted on driving me to the station and thank goodness she did.
As we drove I sat quietly, thinking it all through. The fog was clearing further and as it did I realised that my hopes and dreams of getting myself back into employment were a long way off. Just a simple church service, followed by a brilliant conversation in the church getting to know a great guy, followed by a short but reasonably emotional phone call, followed by 90 minutes on an excel spreadsheet, was the equivalent of half a morning in a good job. I could walk many miles in a day, I could cycle many miles in a day, I could climb mountains and volunteer for an entire day in a safari park, and relish each and every experience, but sit me at a computer for 90 minutes and I was wiped out. I was a long way away from being strong enough to take on a proper job. 90 minutes was a significant improvement on the 20 minutes post-surgery, but nowhere near long enough.
As Allie and I sat, waiting for the train, there was a rush of bodies onto the train that was the Dunblane train, my train, so I stood, said farewell and went to get on. Allie suggested that it might be the wrong train, I looked at the board, looked at the time and looked at the train filling rapidly. It was my train. I turned and got on. Got half way up the carriage then read the announcement on the screen on the roof. This train was going to Glenrothes!! I had to turn and plough my way with my three big bags back through the mass of people trying to get on the train. There is often one going the wrong way and today it was me. I apologised to Allie. She took my hand and led me to the correct train.
I sat, and as I stared out through the window in the gloom of the late afternoon I could see Allie watching out for me through the window. I was on the right train so I wasn’t getting off but Allie watched to make sure that I stayed on the train and went. I took out my computer, switched it on and as we pulled away, I waved goodbye to Allie with a tear in my eye. I was a long way off from normal. I started to write the post to try and make sense of what had happened today, and as I did I became more and more saddened by the realisation that I had a significant period of time, possibly years, before I will be strong enough to hold down a job. The temptation to curl up in a ball on the chair, place my forehead on the window and stare out into the deep dark countryside speeding past through raindrops running across the window was strong. But then a child in the aisle next to me said something loud and funny that made me smile. And as I smiled I realised that I was lucky. So very lucky. I can climb mountains, I can walk long distances, I can cycle long distances, I can ice skate, I can curl, I can go to the cinema, I can go to the theatre, I can do just about anything I want to do and that will allow me to enjoy life. I had my third leg and sea anchor in Allie to keep me stable and sailing on the right course. I was perhaps, all things considered, the luckiest man alive. I was actually alive and kicking and looking at a wonderful future. I had built the challenge. I had a foundation on which to build myself, so I must stop looking too deep into the future, yearning for something that might never come, but instead enjoy the here and now and make the very best of all the wonderful gifts I have been given. So please help me make some noise to keep the fog at bay and help improve the lives and life chances of as many people as I possibly can through your sponsorship.
Thank you.
Yours aye
Archie
BtB!