Day 145 Has seen shock waves, a record broken and a very happy monkey.

  1. Miles Covered under my own steam in my drive to improve my physical fitness and so strengthen my immune system to take the fight to the tumour.

    5 Miles
    Morning walk Commonty Walk 1.7Miles
    Morning prayer & Organ practice St Modoc’s Church & Back 1 Mile

    Lunch time swim 18 lengths therefore 360metres. This was an increase in distance by a further 2 lengths. 40 metres. After my wobble in the church this morning I wasn’t at all sure if I should be trying to increase my distance today but I couldn’t run scared from these most uncomfortable periods of seizure activity. Instead I needed to meet them head on and beat the beast. So I touched base with the life guard, jumped in and cracked on. 4 lengths breaststroke, 4 lengths front crawl breathing every third breath on alternate sides followed by 4 lengths medley with 2 backstroke, 1 breaststroke, 1 butterfly then a further 4 lengths front crawl and it was here that I really struggled on the breathing every third stroke. My body was screaming for more air and trying to force me to the surface and to break my rhythm but I reduced the pull a little on each stroke in order to keep my rhythm and breathed extra deep on each breath and tried to focus on stroke and breathing including a nice steady out breath through my nose as I swam. I was conscious that I was pushing my body harder than I had in the pool before so kept a very tight weather eye on my general feeling. I couldn’t afford to get caught out in the water. The slightest sign of seizure acivity and I would have stopped and grabbed the side but there was nothing. Just the wonderful feeling of endorphins rushing through me as I pushed myself hard physically. My last two lengths were a warm down of 2 lengths breaststroke. I stretched off with a smile on my face. I had done it and felt that I was indeed getting fitter despite putting on a little weight!!

    Evening Walk Grazings Cricket Pitch 1 Mile
    Evening Prayer & Organ Practice St Modocs Church & Back 1 Mile

  2. Bags of Rubbish Collected as part of my ongoing drive to keep improving my balance to an optimum level.

    2 Bags

  3. Time in Prayer and Organ Practice. Prayer is the greatest power on earth and forms a significant part of my day In which I thank God for bringing me out of the shadow of night and into the light of a new day that I can spend in service before praying for healing, for guidance on the challenge and most importantly the healing and needs of others. I also take time at this point to read the daily readings as a source of wisdom while practicing the organ tunes I have learnt and am learning as part of my morning and evening prayer routine to force the cognitive rewiring of my brain.

    90 Mins of Prayer
    20 Mins of Organ Practice

  4. Food is a huge part of my challenge to beat the beast and has also generated a significant amount of interest so I will mention in bullet points any changes to what was eaten. (Food eaten daily will consist of the following:

    1. Breakfast will almost always be an oat based cereal mix served with a banana, two dozen or so blueberries and a tablespoon of flaxseed served with coconut milk followed by a piece of wholemeal seeded toast with butter and Marmalade and then an apple and a glass of pure orange juice. Any changes for the day will be noted here.
    2. Lunch will almost always be either a tuna mayonnaise sandwich with spinach, rocket and watercress salad or a poached egg on toast with spinach, rocket and watercress salad followed by a veggie pick and mix of 50g of tenderstem broccoli, 10g of carrots, 12 red grapes and 4 cherry tomatoes. Any changes for the day will be noted here.
    3. 8 to 10 Brazil Nuts will also be consumed daily by taking 2 brazil nuts each time I return home from a walk or Physical Training or the Church. A Cup of Horlicks will be drunk each evening along with a port glass of red wine and 3 squares of 85% Dark Chocolate.
    4. Tea will almost always be a home cooked meal cooked from raw ingredients followed by a tangerine. Tonight was smoked salmon on toast with extra virgin olive oil, cream cheese, avocado and lemon. Incredibly simple, incredibly easy yet packed full of good stuff. Verdict? Margaret was over the moon and claimed to be once again a very happy spoiled monkey!! James was also over for tea before Scouts and he enjoyed it immensely too.
  5. Achievements. What have I actually managed to achieve through the day beyond cooking, eating, praying, practising and Physical Training.

    1. I managed to almost finalise my paperwork as an expression of interest as a future full time resident of the Erskine nursing home in Edinburgh. I have no intentions of going just yet but all of this admin needs to get done before it is too late to reduce the burden on friends and family should the buzzer go in my head and switch off my cognitive and motor function. I am determined to and very positive that I can ‘beat the beast’ but when filling out such forms and gathering in all the supporting evidence needed to support an application the cold facts of the medical report with the forecast of likely events leading to the likely rapid decline of cognitive and motor function until the lights go out make for a hugely emotionally draining morning of paperwork. The shock of the re-visiting of the cold facts left a nasty metallic smell in my nose and taste in my mouth before sweeping through me like a shock wave of emotion in the form of a seizure. It was short lived but horrible and left me whimpering for mercy as I sat hunched over the forms at the table pen in right hand and soggy hanky in left.
    2. Later however I got a boosting call from the delightful Rachel at SSE Hydro, my electricity supplier and to whom I had introduced the challenge during our call yesterday. She had been thinking about me and had dawned on a way in which she could reduce my electricity bill by sending an engineer over to change my meter in such a way as to give me more control over when I can use the cheaper off peak electricity for my water boiler and storage heaters. She made the proposal and then agreed to get the engineer over who called to confirm the date for the work this evening. I was amazed by her determination to give me the best possible deal with no prompting from me whatsoever. She just thought about it and decided to call.
    3. I nearly completed my intray but when I got back from swimming I, of course, had received more mail and then when James came around he brought me some more that hadn’t quite caught up with my change of address. So I did some more shredding, filing and form filling but nearly there and after that I have 389 emails and messages to tackle so if you are waiting for a response from me please forgive my tardiness. I will get there as quickly as I can.
  6. How was I feeling?

    Initially when I woke and as I walked I felt normal and normal felt amazing. I was skipping along the Commonty walk today and very happy. But then, as I sat in morning prayer and prepared to play an organ tune as a form of my own expression of worship to God and thanks for the fact that I could actually learn and play a tune I received the most disconcerting warning of an incoming seizure. As I studied the music to remind myself of the tune I felt a twitch in the back of my nose and then as I closed my eyes in discomfort, through the darkness came an arc of light travelling at an incredible speed and that then hit me hard like a wall of sound carried on the light wave but that also carried the distinctive metallic smells of a seizure. It shook me to the core this one and I just couldn’t understand it but it was travelling fast so left me fast but also left me weak and slightly disorientated, almost as if it had sucked the very soul from me. It was hard to take, especially when I had been feeling so blessedly normal this morning and I just couldn’t understand it. Here was I praying for me, for others, for peace, for calm and for healing and preparing to offer a piece of music in a suitable break in the flow of morning prayer as a thank you. Perhaps my organ playing is worse than I thought it was. Perhaps he was just trying to stop me from playing. But then the other possibility is that he is healing me and the changes in the brain from such a change are creating the electronic charges that trigger the seizures. I knew not the answer but I did know that I had to beat the beast so I faced the organ once again. Studied the music. Pulled out the right stops. Lifted my hands and went to play. Ooops. I hit completely the wrong notes. It was horrible. So I tried again. Clumsy. I hit the edges of the notes that I meant to hit but in so doing hit the other notes as well. The noise made my toes curl. So I tried again. Slowly and surely the tune started to come. To flow from the page and into my fingers. I had done it and managed to play the tune. My nostrils flared in defiant celebration and tears welled but I switched off the fan. Picked up my phone and continued to read from the morning prayer sheet. This time with thanks but also with a pleading for a swifter healing in my heart.

    Apart from the other short lived seizure that I described in paragraph 5a above I have otherwise felt great all day. So as before hour by hour I am generally great. But not yet perfect. But I will be. One day.

  7. Memorable God Filled Moments. I was going to break this category down into two parts but then I realised that a memorable moment has undoubtedly got God’s hand at work within it so the two go together and remain together as the point at which I tell the story at the end of the post.

    As James and I chatted about sport and homework and how school was going I was thrilled to hear that all was going well for him. He even proudly told me that his year group were doing incredibly well in all their attainment levels across their subjects for this stage in the academic year and he seemed very happy and rising to the challenge of the extra responsibility that comes with getting older. My heart was hugely calmed and swelled by this young boy happy and growing in confidence but not arrogance. As I waxed my walking boots James washed up his plates and as he did so he told me that he had also achieved his navigation badge at Scouts. Brilliant. He was achieving and even wanted his Dad to come and be a Scout leader again. I explained that I couldn’t just yet. Until I could be sure of being able to deliver without having to walk away part way through an activity due to some stray seizure etc but that soon, very soon, I hope to achieve that level of stability and start to come back to Scouts with him. I walked him across to Scouts on my way to church and when he got to the hall, his friends sitting on the railings and calling out to him he stopped on his bike. Pedalled over to me and in full view of his friends gave me a massive hug. That was a moment that as a Father I wasn’t going to forget in a hurry. I had a lovely session in prayer and on the organ after that. Thank you James.

    Earlier in the day, as I walked back from Church this morning feeling a little shell shocked after such a difficult session I bumped into Sue of Doune Chic. They had decided to donate their 5p carrier bag charge to charity through the Beat the Beast Challenge. We had no idea how much it would raise at the time but Sue, Stacey and I all thought that every little counts so why not? My goodness. Today she informed me that I could go and collect the £30 odd that they had managed to collect. I was flabbergasted and incredibly thankful so I will go around next week and collect another donation for the challenge. Fantastic and a huge thank you to Sue, Stacey and Kenny. What a fabulous idea. If you own a shop or work in a shop or have a friend who owns or runs a shop. Please consider donating your 5p carrier bag charge to the Beat the Beast Challenge. Every single penny of the money raised goes directly to the 5 charities I support. Not a single penny is lost and all is very clearly accounted for through the wonderful Webb and Wallace Accountants. It is just an idea but do please consider it because what a difference that will make to so many more people.

Thank you

Yours aye