The Christmas and birthday season this year has seen the 1,000 miles walked barrier broken by some margin, while climbing to the equivalent of the middle of the stratosphere, while moving the equivalent of a heavy goods vehicle a metre and has been punctuated by a huge amount of administration, but also by delightful times with the family spent giving to each other both in treasure, and perhaps most importantly, in time. Just simply spending time together chatting, teasing each other with the good old ‘do you remember when’ game and the ‘guess who I am game’, after taking to the hills and spending some time in the wonderful winter sunshine walking Bredon then Dumbleton Hills. There has also been amazing food cooked by Mum, and presents. With 10 at Mum’s house for Christmas there were an awful lot of presents. There have also been hundreds of delightful messages wishing a merry Christmas and a happy new year so life has, all in all, been fantastic this last week but today I was tested. Sorely tested.
It was a tiring week travelling the long distances required to take Heather to her modelling shoot in London before then heading to Evesham to join James and Allie at Mum’s. Being surrounded by people, no matter how loving and supportive, is in itself tiring when trying to work the brain far harder than it has had to work for some time. Conversation is such fun when catching up with friends and family but tiring too. The journey back home was uneventful but slower than anticipated so it was late before lights out was achieved. The plan was to try and have a lie-in but I woke after 4 hours and, try as I might, I could not stop the brain whizzing around the hundreds of things to do, while also pondering what the results of my last scan might be. I got my MP3 player and headphones out and attempted to meditate. Then tried again. Then tried again. Then tried again and again and again and again until, at 0730, I realised that I was never going to get back to sleep again. So I got up and as I did I started to realise that all was not as it should have been. I was banging into furniture and bouncing off the walls as I made my way to the bathroom. I was banging into furniture and bouncing off the walls as I made my way to the kitchen with my neck running with a feint trickle of blood from an unnoticed shaving cut. I took my anti-seizure drugs and bounced off of the walls to my bedroom to get changed properly and ready for the day, yet as I did so I fell back onto the bed as I tried to get my trousers on. I struggled to do up my belt. Then during breakfast I was finding it difficult to manipulate my cutlery in my hands. I had to strain hard and put in maximum effort just to open the top of a smoothie bottle. I knew that I had to get to the keyboard and force the brain to function.
I got to the keyboard and sat and prayed and attempted to play. Then prayed and attempted to play, then prayed then attempted to play. Each time I prayed I spoke clearly so I knew that it wasn’t a seizure. Each time I attempted to play I struggled to get the fingers in my left hand to do the most basic of fingering for organ tunes I knew well. It was as if they were physically exhausted and completely unable to make the short distance from one key to another. The harder I concentrated on my hand, the better it worked, but in making it work it took the cramped form of a hand belonging to a person with motor neurone disease. I struggled to get the hands to play the tune in time with the music. I struggled to make anything work normally. I am not even sure if the noise that I was making could be called music, but onwards I pushed. I had no option but to sit and try, try, try again until I forced the brain to find a way to function, to find a way to talk to the body. An hour and a half later, and with very sore fingertips, I managed it, but I still wasn’t right. As Allie drove us to drop off the hire car, I struggled to speak any sort of coherent sentence. I just seemed to be so far behind the conversation Allie was trying to have with me and, whenever I tried to engage in the conversation or even crack a joke to try and break the mood, I would find myself coming in from a completely different angle. The brain just couldn’t keep up. The man at the car hire place was friendly but also on fire. He talked and moved so quickly that I had no choice but to step back and let Allie square away the vehicle return. I was starting to worry slightly. I was showing all the symptoms of a gentle failure of my cognitive and motor function as well as my ability to coordinate it. It was mainly left-sided, which correlated perfectly with what I should expect should the tumour regress. Was this my tumour coming back in an aggressive form as the oncology team had warned might happen? I didn’t know, but I was worried. Allie was worried too so rather than take a bus we walked the 2.3 miles back to the flat. That recovered me enough to be able to manage some simple tasks, but still I wasn’t right and knew that there was only one thing that was going to bring me back to normal. A good walk. I was exhausted after many, many nights of little sleep and, really, didn’t want to walk, but I knew that I had to walk to try and beat back the beast. I planned a route then folded and waterproofed the map before packing my rucksack and heading out on a 4.65 mile walk past Trinity Academy while climbing 235 feet. It was a new route along a disused railway line I hadn’t walked before and, sure enough, as the afternoon rapidly darkened, I was disorientated. I was struggling to make map and compass make sense in relation to the ground and as the afternoon turned into evening I was still unable to interpret what I was seeing, nor what the compass was trying to tell me. I was becoming increasingly frustrated and started to question what on earth Allie saw in me. I had no money, no prospects and, if this was the disease coming back, I was going to be nothing but a distraction to her when she should be focused on her future, on her PhD. I had recently been told that ‘no they couldn’t help me raise awareness of the challenge’ by the BBC, by Premier Christian Radio, by almost anybody that I asked for help. I knew that I could do so much more than I had so far but didn’t seem to have the means to achieve it. I felt rejected. What if Allie rejected me, after all I had earlier made Allie sad by my lack of understanding of her needs? What if all these symptoms were resultant from me being rejected by God? Resultant from the tumour returning? I span around and around under the solitary street lamp, on this dark cycle path junction, desperately trying to make the map make sense. Through teary eyes I studied the map. I studied the signpost above me yet still I couldn’t make map, signpost and compass make sense. Eventually a nice lady came up to me and, after a brief conversation with a smile, I was reorientated and sent on my way.
Back home, and with improving cognitive and motor function, I apologised to Allie, who came home laden with bags of organic tenderstem broccoli, tomatoes, carrots, red grapes, brazil nuts, lactose free yoghurts and organic red wine. I helped her carry these enormous and heavy shopping bags into the kitchen, placed them on the floor and asked Allie for her forgiveness. Allie reassured me and thanked me for my apology. I knew then that after my worrying inability to function, followed by my making her sad by my own lack of understanding, that if she was to reject me she had every reason so to do. But she didn’t, she went out and bought all the key food ingredients that I needed to beat the beast. She thought of nothing but me through her sadness. I was entirely at fault yet still she thought of nothing but me and my needs. I learned a valuable lesson that day and was very thankful for Allie.
Later a memory of an email from a friend that Allie had shown me returned. And thank goodness it did because it settled me completely. In that wonderful email, as if in answer to my fear of rejection, was this passage:
‘I said to the man who stood at the gate of the year, “Give me a light that I may tread safely into the unknown”. And he replied.
“Go out into the darkness,
And put your hand into the hand of God,
That shall be to you better than a light and safer than a known way.
So I went forth
and finding the hand of God,
strode gladly into the night,
and He led me toward the hills
and the breaking of the dawn in the lone east.’
‘Spoken by George VI in his Christmas 1939 broadcast to the Empire these words struck a chord with a country facing the uncertainly of war. They were the preamble to an obscure poem, ‘God Knows’, written in 1908, but nobody was able to identify the poet. Finally at midnight on Boxing Day the BBC announced that the author was Minnie Louise Haskins, a retired LSE academic.’ (from an LSE Blog post).
These words struck a chord with me while facing the uncertainty of the disease and the future, as I think they did for Allie too. Because as we leave the year that was meant to be my last, and enter the year that was never meant to come to me, I not only do that in the hand of God, but with the hand of Allie. Perhaps somebody will come, like they did for Minnie Louise Haskins, and pluck the challenge out of obscurity, to help me raise awareness of the challenge further. To help me do the very best I can for as many people as I can for as long as I am blessed enough to be given. I am, with your help, and that of God, and Allie, and my family and my brilliant oncology team, truly, I am sure, making the impossible, possible.
Years spent Beating the Beast: 1.3
Months spent Beating the Beast: 16
Weeks spent Beating the Beast: 70
Days of official challenge activity completed: 179
Total Miles Cycled: 993.11
Total Miles Walked: 1038.21
Total Miles Run: 190.85
Total Miles Paddled: 7
Total Distance Cycled, Skied, Run and Rowed in the gym: 93.53 miles
Total Distance Swum: 5,220 metres
Total Miles covered under own steam: 2,327.9
Total Height Gained under own steam: 94,324.93 feet
Mountains Climbed: 8
Hills Climbed: 35
Days of Voluntary Activity: 11.5
Organ tunes learnt and performed: 5
Salmon Caught: 0!
Bats Found:4!
Curling Matches played in: 8
Curling stones placed on the button (the centre of the target): 3
Weight Training Sessions: 34
Weight shifted: 10kgs lifted over 2,442 metres or 31,260 kgs moved over a metre,
Aerobic Circuit Sessions: 12
Press Ups: 1,738
Pull Ups: 54
Sit Ups: 3,707
People Met and Hands Shaken: 625
Pots of tea shared: 40
Prayers joined on the top of a hill: 3
Prayers joined in the street!: 4
Prayers joined in a Train Station: 1
Prayers joined in a Café: 2
Pills popped: 1,304
Days until Driving Licence (lost to epilepsy) possibly Returned: 690
And most importantly – Money Raised as at Week 70 – £11,125.
Considering I started this challenge 16 months ago very quietly with no target beyond a fiver, thanks to the brilliant advice from a friend of mine, I am absolutely thrilled and again thank you all. That is £62.15 for each and every day that I have managed to find the will and energy to take on an activity designed to help me Beat the Beast and my goodness it has been worth it for my peace of mind, for my healing and for the five wonderful charities you are supporting through your generosity. Long may it continue. May I also ask again however that if you are not sponsoring me to please consider it for as much or as little as you can afford.
Thank you all for your incredible comments and support. Please continue to spread the word.
If you see me around do please give a cheery hello and shake my hand or give me a cheery wave to show your support and encourage me on.
Thank you
Yours aye
Archie
Thank you for joining me on my own personal journey and encouraging me to walk, cycle, climb, paddle, sport and do good deeds each day to ‘Beat the Beast’ while helping to improve the lives and life chances of so many more people through sponsorship. The Five Charities that I have selected to support are:
- Cancer Research UK – My Father Succumbed to Lung Cancer; a couple of friends are currently fighting cancer and I am fighting a brain tumour. Let’s Help to Beat Cancer Sooner.
- The Prince’s Trust – Inspiring and preparing disadvantaged Young Lives for success.
- British Red Cross – helping those in need around the UK and the world whoever and wherever they are.
- World Wide Fund for Nature – For a Living Planet and a Future Where People and Nature Thrive.
- Help for Heroes – Support for our Wounded and their Families. To learn more about my story that brought me to this point, how I plan to ‘Beat the Beast’, what activities I plan to do within the challenge and why, please see my welcome video on this page.
How to Sponsor Me
The Beat the Beast Challenge is self funding through my own contribution while keeping costs to a minimum with voluntary support and corporate sponsorship in kind. Therefore the entirety of every penny donated will go directly to the 5 charities listed above.
Please sponsor me by completing a standing order form either through your own personal internet banking or by completing a hard copy standing order form in your branch of your bank and then handing it in to the teller.
It is entirely up to you how much you would like to and are able to sponsor me for so do please give as much or as little as you can. Every penny will be very gratefully received.
While I hope you will encourage me to keep going by sponsoring me for every day I survive and am able to find the cognitive and physical capability to complete a day’s task designed to improve my chances of ‘Beating the Beast’ or improving the lives of others, 5 days a week, four weeks a month, for as long as ever I can. Any One off Cash contributions will be most gratefully received and distributed in exactly the same manner to the five charities as the sponsorship. Any one off donations can be made by BACS or cheque.
Thank you for having enough faith in me to sponsor me.
Yours aye
Archie