The last 3 days has seen 8 miles cycled, some paperwork signed, a plan made, a very close seizure and a sad duty performed. 

I cycled to Dunblane on a dry Thursday morning carried along in the throes of a late dawn chorus with yellowhammers and chaffinches with their delightful pink breasts flitting along ahead through the hedgerows beside me. It felt so good to be on the bike, cycling through the beautiful countryside flanked by the rolling hills of the Ochils, slipping and sliding through the thick mud on the unsurfaced part of the track. It had been 8 weeks since the fall on the Ochils and, with one or two small exceptions, little proper exercise taken so it felt so jolly good to be out on the bike again with the mud splattering up my face. I was feeling alive. I arrived at the solicitors a little warm but cooling down nicely as I locked up the bike. I was here to sign the paperwork for the mortgage, my offer, and the inland revenue’s stamp duty acknowledging that there was, whoopee!, no duty to pay. All done with the lovely Caroline at Tho & JW Barty it was time for a celebratory Mocha in The Riverside in Dunblane before the ride home. 

Thursday afternoon saw the most marvellous Gary come over to go through my draft plan for the updating of the flat. With the original decor from the original build In the 1970s, and a loo that tries to eject you by tipping dramatically forward when sat upon, it was time to redecorate! The plan had been drawn up jointly between Mum and Allie in an answer to my appeal for help when I, after a lifetime of magnolia and sandpaper carpets in school and military institutions saw nothing when trying to understand what to do with this tired old canvas. It was a great and positive meeting in which he confirmed that our joint plan was not only just a good one, but was eminently doable and, perhaps the most important piece of information, could be done within budget! Just, but with a wave of Gary’s magic wand and some imaginative tweaks we could do it within budget. It was a great meeting that made for a great day and left me enough time to try out a new recipe. Indian Style Steak. Delicious and full of wonderful spices and vegetables.

One of the sad duties that I, diagnosed with a terminal illness, have felt a need to perform, is to sort out my affairs in such a way that when the buzzer goes the decisions as to what happens next and the provision for such an eventuality are already taken and put into place. This relieves a great burden from the shoulders of my family in terms of the worry and concern on all the ‘what happens if?’ questions. However, depending on the decisions that I am making, I can also relieve my family of the tremendous burden of care at a time when I am no longer well enough to be left in the home alone or able to safely cook, feed and care for myself. While, in an ideal world, one would much rather be cared for and looked after by the family, for me and especially for my children, it is absolutely because I love them and wish to protect their future, that I felt that I had to make the decisions I was today making. I needed to confirm the hospice care plan for me in preparation for that day, which God willing will never come, but which the medical facts suggest may not be too far around the corner. For a long time I have ignored the medical facts. My previous two scans had shown tiny amounts of shrinkage. Only tiny amounts, but shrinkage nonetheless. Maybe, when coupled with the European trial I am lucky enough to be on, my Beat the Beast Challenge is working and I will never therefore need any form of terminal care until I hit old age. However, this last scan, in which there was no more shrinkage made me reassess the facts. The tumour is stable and could quite feasibly remain stable for many years. Many, many years. In fact I truly and wholeheartedly believe that we will beat the beast. It will take many years. But many years is a lot longer than was originally given to me with the worst case scenario for the prognosis being reached this year. Not only am I going to reach that fateful day but, as I have said before, I am going to sail right past it and keep sailing forward towards a future without a disease for as long as ever I can. But the situation could change very quickly which I have indeed witnessed through a friend who was so sadly diagnosed not long after me, but who when speaking to him on the telephone informed me with such excitement that he had just managed to get out of his wheelchair. He was improving. He was beating the beast. ‘Come and see me Arch!’ I promised to go and see him the following week. Just a few days away. He never made it that far. I had to make provision for my future to protect the children’s future. To protect my family’s future.

Archie holding Archie
Archie holding Archie

I had chosen, through the recommendations of a friend of mine, whose father was nursed at the Erskine Hospital Glasgow and nursed so very well that I have chosen to go to an Erskine hospital and as I knew Edinburgh so very well and felt so very comfortable in Edinburgh, rather than increase any feelings of disorientation by settling into a new city, I would go and make an expression of interest for a place in the Erskine Hospital Edinburgh for should, or when, the time come. I woke on Friday morning uncertain as to whether I really needed to take the next step of expressing an interest for long term care with Erskine Hospital. So I sat in the kitchen to pray before eating breakfast and pondered the wisdom of what I was planning to do today. I am only 43. Do I really need to take such a step? Am I not jumping the gun somewhat? Am I not flying in the very face of my faith which is telling me to keep fighting? Telling me that I will beat the beast? My thoughts became prayers and my prayers became questions and as I finished I was close to cancelling my plan to register an interest and to help distract me from such negative thoughts I went to switch on the radio. As I did so I started to receive the answer to my questions. The answer to my prayers. At the point of looking up at the radio I noticed that my sight was a little blurry. I hadn’t been for a walk this morning so put it down to a sedentary morning and a lack of breakfast. So I set about breakfast. Chopped up a banana into the bowl, poured a nutty muesli and granola mix into the bowl followed by coconut milk. I started to eat and as I did so I started to find it harder and gradually harder to get my spoon into the bowl and pick up some cereal. I had lost all depth perception through my blurry vision so I had at times to get the spoon into the bowl and under the cereal by touch. By getting the spoon as close to the bowl as possible. Dragging it towards the bowl until it hit the bowl, then up, across and down. Success, and I seemed to manage to get at least half a spoonful into the mouth each time. Then some toast. Got it into the toaster by feel. Using the left hand to find the hole and marking it with the hand to bring the bread over in the right hand to touch the left hand by the hole. Guide the bread in with the left hand. Second time lucky in pushing down the toasting switch but managed and made some toast. Butter. Marmalade. Perhaps the sugar in the marmalade would help. But it was taking so long. But I was managing. But then it was time for an apple and as I went to grab the apple from beside me I knocked it onto the floor. Up to the sink to wash it and as I did so I noticed that creeping weakness led by pins and needles in my hand. Back at the table I cut the apple in half and as I did so I noticed the first constriction in my throat. My lips and cheeks started to palpitate and my left hand became weaker. I had to concentrate hard just to swallow now and the radio was ruining my concentration. I went to switch it off and managed to press the small off button long enough on my third attempt with the back of my hand. So now I had peace to concentrate. To focus on beating back this seizure and beating the beast. I battled with cutting out the core of each quarter of the apple but persevered, losing only one quarter of the apple as the left arm twitched pushing the knife too far through the apple, out the side and into my hand with the top part of the apple spinning away onto the floor while I dropped the other piece of apple onto the floor in shock at having run the knife into my hand. I should have stopped trying to eat when the seizure started but I had to beat the seizure, to win a small victory against the beast. To smile again. And I also needed to eat. Luckily I was just using a simple cutlery knife from a knife, fork and spoon set bought from Poundland to set up in my new flat. So no damage to my hand done and now I needed to eat the apple. It was getting harder to swallow so each mouthful I took was a tiny bite of the apple which I chewed and chewed to nothing before trying to swallow. I braced against the table and swallowed. It went. I wasn’t choking but after the eel seizure incident on Day 25 in which if I hadn’t been in hospital I am not sure that I would still be here, so I couldn’t be too careful. I was living on my own. Who would even know if I was choking? My prayer and question was answered. I had to express an interest in the Erskine hospital. I didn’t want my children to be the first to find me. Perhaps they would start with home help to maintain my independence and then refer me to the hospital in Gilmerton when they needed to or maybe I would never need to go. But right now I needed to beat this seizure so I could just eat my apple and make a packed lunch. I whimpered to God for help and sure enough, over time, the seizure started to pass.

I took another small bite of the apple and yelped as I bit my cheek but set about trying to open a tin of tuna and fumbled the can opener at first as I struggled to attach it to the can but persevered and got there. Tuna mayonnaise sandwich made, then some vegetables scrubbed and carefully cut for my veggie pick and mix bag before putting some grapes into a sieve for washing. I so nearly scattered them all over the floor as I tried to pick up the wire handle but managed it. Washing up done I packed some bags for tomorrow. I was linking up with my Uncle Gavin who was coming up from the Borders to attend a distant cousin’s memorial service tomorrow so needed my suit, washing and shaving kit and drugs et al to take with me so I didn’t have to come back to Doune to go back to Edinburgh again. I rushed around the flat feeling slightly weak and with a slight headache and slightly blurry thought processes similar to a hangover but this symptom had a much better name – seizureover. Then I was off and managed to get all the way to the bus stop without having to go back to the flat once. I had everything I needed.

I knew what needed to be done but it didn’t make it any easier. As I walked up the drive towards Erskine with my suitcase, suit carrier and computer bag, I really had to swallow hard and keep reminding myself that I wasn’t coming to stay. This was just a precaution to protect the children’s and wider family’s future. God willing I was never going to need to come. I walked in and was pleasantly surprised to smell that it didn’t smell like a hospital. It didn’t feel like an old person’s home. It felt and smelt more like the Premier Inn I had been staying in previously. I walked up to the reception and waited patiently for the lady at the desk at the far side of the room to look up and see me. Eventually she did and sat and looked at me, blinking with an almost bewildered look on her face. ‘Yes?’ she asked. I saw it, but I couldn’t hear it so I asked if I could come around to talk to her. I explained that I was partly deaf and didn’t want to shout at her from across the room. She stood up and came over to see me. ‘What is the purpose of your visit?’ she asked. I explained that I had come to express an interest for a place in the home. ‘Who for?’ she asked. ‘Me’ I replied. She looked a little shocked as she leaned over the counter slightly to observe the quantity of bags and baggage I was carting around with me and stood in front of her with. This made me smile and assured me that I was most certainly not ready to come here anytime yet if ever at all, ‘Ohhh NO, NO, I wasn’t expecting to be coming in today. I have been diagnosed with a terminal disease so need to express an interest in case my condition worsens faster than expected.’ Her demeanour softened as she looked at me. ‘What’s the condition if I may ask?’ She did indeed ask. ‘BBBBwain Twumer’ I stuttered, then stood there kicking myself for still suffering from the after effects of the seizure. She reached for some forms and asked me to wait in the waiting area and a nurse or social worker would be out shortly to help me fill them out. ‘No, No,’ I said, not stuttering this time. I can do them myself but would very much like a tour of the facilities if that was at all possible. I took the forms, took a seat and started writing while the receptionist went to inquire about a tour. I sat with a deep sense of foreboding, not about coming to Erskine, I was very fortunate to have this opportunity by dint of my service and was sure that it was to be an excellent facility, but foreboding about the circumstances that were going to lead to me being admitted. As I wiped some moisture from my eyes and blew my nose with my trembling hands a nurse came and introduced herself. There wasn’t anyone available for a tour today but she had a spare 5 minutes. Do I have any questions? This nurse was delightful and clearly loved her job and even talked to me on a level rather than as a confused or disorientated patient who can’t even say ‘brain’. She answered my questions and gave me a feel for the stages of care that I would experience depending on need. This raised my spirits a little and I joked about having seen the signpost for the cycle track to Edinburgh City Centre just outside the Erskine Home gates. ‘I could run to the city rather than take a bus. It is only 6 miles!!’ Judging by her reaction that wasn’t the first time she’d heard it but smiled kindly before shaking my hand and getting back to work. The receptionist, now smiling, booked me in for a tour on Monday.

Saturday lunchtime saw me attend the memorial service with my Uncle Gavin for John Charles Sholto Douglas, the 21st Earl of Morton, in St Mary’s Cathedral followed by a delicious lunch with my cousin Charlotte and Mark and her son, my new cousin, another wee Archie at just 6 weeks old. The service was all about a man whom I had met very briefly only once many years ago as a young man. He left an impression on me then of being quite down to earth and quite fun but sadly I never had the occasion to meet him again. However I was so very thankful to be at his memorial. It was a lovely service in a beautiful space, with powerful organ music, surrounded by lovely people, but it was his eulogy that so inspired me.

What I heard was the story of a man educated in the local comprehensive who, when faced with numerous hurdles commensurate with crumbling family fortunes in two countries he cast aside any idea of entitlement and instead worked every hour God gave him as herdsman, chauffeur, chef, steward, groundsman, maintenance man et al to turn the crumbling estates into successful businesses providing a future for many, whether in terms of employment or apprenticeships or just advice and guidance to many, and an excellent example to be followed. By sheer hard work and determination he achieved much and by making people the very central pillar of all he did he achieved even more and assisted many more, some of whom I was lucky enough to meet after the service. So as I left and pondered on all I had heard this day I received a very vivid confirmation that I was absolutely on the right track. That if I kept up the hard work and determination there was a very real chance that I could beat this beast. I also understood that despite what has been, at times, a frustratingly slow rate of growth, by keeping people very much central to the whole journey, the challenge will continue to grow but even better stood a real chance of sustaining a steady growth for as long as ever I can deliver on my promise and thus genuinely help many more people. But I need to be patient, I need to be determined, almost single minded in its achievement, but not at the expense of people or at the expense of my faith. Let God be my guide as he so ably has so far, trust in him, but work jolly hard and with determination I will succeed. On Monday I take my tour of the Erskine Home but only as a precaution. I will continue to fight through the difficult times. I will fight through the adversity and:

I shall believe in the Lord to renew my strength;
I shall mount up with wings as Eagles;
I shall run like a deer and not be weary;
I shall walk the long path and not faint.