Today hasn’t been a good day. It’s been a great day!!

I was visited again this morning and so powerful was the sensation that someone, with whom I had been talking before drifting off to sleep, had just left my room that when I woke I decided to try and find out who it was. So I was hunting around the flat at some extraordinary hour this morning looking to try and see who it was I had been talking too. But I found nothing but calm. I was completely calm and relaxed about the scan results today. In fact so relaxed that I managed to drop back off to sleep until my alarm woke me at 7am.

Up and into St Modocs for morning prayer. Just to make sure! Then back to the flat, breakfast, washing on and back out to catch the 09:04 No.59 bus to Stirling to catch the train to Edinburgh.

Having just come up from Euan and Gemma’s wedding in Dorset in which the trains Heather, James and I all travelled on were 10 carriages long, I was rather surprised to see the train turning up in one of Scotland’s cities to collect passengers from a further 5 sizeable towns and carry them onto our Capital City of Edinburgh with only 2 carriages! Neatly however, this worked entirely in my favour because I found myself sharing a table seat with the marvellous Simon Spencer right from the very start. The conversation started with notes of disbelief about this half train sent to collect us before I was then asking what Simon did for a living and then this gentleman working in manufacturing asked me what saw me travelling to Edinburgh. Simon was such a cheerful and talkative gentleman that I had to seize this opportunity. I reached for a flyer and spent the remaining hour talking about the challenge. Talking about the situation that led up to the challenge as I researched and wrote the strategic plan for the Future Nation Foundation to try and remove the element of chance that too often permeates the lives and life chances of our vulnerable, disadvantaged and disengaged young people. I talked about the having to resign as the CEO of the Future Nation Foundation when I received a diagnosis and a prognosis of a Brain Tumour which, when coupled with the treatment plan proved too much for any potential funder to have faith in my ability to lead the organization to the delivery of successful outcomes. We then Talked about the development of the plan for Beating the Beast and the wonderful and courageous people I have been lucky enough to meet. We talked about pouring a glass of wine and watching a video and then possibly another glass of wine to catch up on the journey so far. In fact I talked and talked, encouraged by Simon’s questions and before I knew it we arrived in Edinburgh. It was real pleasure to travel with you this morning Simon and thank you for listening. I hope you come and join me on the journey.

The marvellous Simon Spencer
The marvellous Simon Spencer

At Edinburgh Waverley I met up with Allie who had kindly volunteered to support me as I received the results. Even better was that she was driving so there was time for a quick lunch of baked salmon with roasted vegetables. Quite delicious but then we were in the Western General Hospital to find that I had gone to the wrong clinic location. I had to be at the DCN clinic on the other side of the hospital. Suddenly I remembered that this was exactly what I had done on my last clinic. I was so used to going to the Oncology side for my weekly Radiotherapy followed by my Monthly tests and clinical appointments during Chemotherapy. In fact, as the severity of the brain focused treatments started to take hold it was the routine of taking the bus, followed by the train, followed by the bus before walking into the Oncology department and going through the routines of the treatments that frankly kept me sane and even cognitively functioning. It was more than once during treatment, in which I found myself staring blankly at the enormous train departures and arrivals board set high above the concourse in Edinburgh Waverley. Staring at the board knowing that I needed some information off of the board but not being able to remember exactly what. That if I kept standing and staring perhaps something would pop up into view that would remind me what I was looking for. So more than once I could be seen with my cap on to cover my scar and rather odd patchy hair style staring at the board with a blank look on my face, tears welling in my eyes, as I fought to remember what I had to do next. I didn’t want to give in and ask for help. I had to force the brain to function. I had to win this battle and eventually, as I shuffled about the spot on which I was standing. Standing and staring at the board, the name Dunblane would come to me. I was looking for the next to train to Dunblane. But then I had to remember whether or not I was getting off at Dunblane or Stirling and that all hinged on what time of train I was catching, as to whether it connected with the Dunblane bus or the Stirling bus. I carried the timetables and once I had remembered Dunblane the rest of me seemed to be firing again and once on the train and moving I could then make a decision, Stirling or Dunblane? Some days, this could take a while, but again by persevering I would get there eventually. I would beat the beast, get off at the right station, connect with the bus and get home successfully. I had been given many offers of help. Many offers of lifts. But frankly to accept such kind offers just felt as if I was giving in to the inevitable, giving in to the degredation that I was suffering from during treatment, giving in to the beast. So I kept on with the bus, train, bus and made it through treatment. But today’s error arriving at the wrong clinic with only 5 minutes to make it to the other side of the enormous hospital brought back both the harrowing memories of those moments when my entire brain seemed to freeze while the rest of life kept whizzing by but also made me question how well I had come back from these treatments. I had made this exact mistake on my last visit 3 months ago. Why again!!! I was hugely frustrated as I rushed Allie back through the hospital to DCN and that it was only on arrival that I realized how easily I had just navigated us through the hospital. When I tried to do the same feat with my Mum during treatment just a year ago I got horribly lost and ended up relying on Mum and a succession of nurses to navigate me through the hospital. But today I very much felt reassured that I was functioning more efficiently.

Almost as soon as we arrived we were ushered in and were straight down to business. I was asked a few questions and then the observations on heart and lungs was done and then after a few more questions it was time for the results. ‘Archie, said the good Dr, ‘the tumour hasn’t grown a bit. Not even a tiny amount.’ That was great news to hear but I was, initially, a tiny bit deflated. The last two scans we had made the impossible possible by shrinking it just a tiny wee bit, in fact such a small amount that it didn’t change my prognosis any, but to me, it was a start. We had it moving backwards. We were beating it. Even if only a tiny bit. So today I was naively perhaps, hoping for more of the same. More shrinkage. So I asked. ‘Has it not shrunk even just a tiny bit? Even if it was perhaps an immeasurable amount isn’t it possible that there was a little bit more shrinkage?’ I was clutching at straws now and as I asked this question knew it but the good Dr looked at me with a slight look of sympathetic understanding while at the same time an immense glow of positivity through her smile. ‘Archie, this is the best possible result that we could have hoped for at this stage. The tumour is stable and I have seen people with a stable tumour live for years. This is really good news!!’ The good Dr was of course entirely right and I counted my blessings. Of being in the hands of such wonderfully capable people, of being supported by such wonderful friends and family, of being given the gift of live for every day I am given in which I am able to live life to try and beat the beast while helping to improve the lives and life chances of so many more people through sponsorship. I was in a good place but still had some more tests to do.

Blood pressure and weight and height and then toxicity tests before the cognitive function tests. It was these tests that further reinforced just how blessed I was. I had to sign at the end of the sheet of toxicity tests and did so in a fluid hand. I giggled and immediately recalled how difficult I used to find my signature post surgery and how long it took me to be able to produce any form of a recogniseable signature on a sainsbury’s delivery tablet. I didn’t write a cheque for some time for fear that it would be returned as fraudulent on account of the signature. But today my signature flowed freely. Then I had to remember Kite, Dog, Ladder. I made up a story very quickly but then had to recite the 7 times table backwards from 100. ‘93, 86, 79, 72, 65, 58,’ I rattled through it at such a pace I could hardly believe that it was me. ‘Okay thank you’ said Nurse Kirsty. I was so much better than I had been 3 months ago. ‘Except for what were the three words you had to remember?’ continued Nurse Kirsty. ‘The Kite dragged the Dog up the Ladder.’ I replied with a smug look on my face. My recall was immediate, with no hesitation. I was thrilled. I was recovering from the treatment. A few more tests and all was done. I was good to go.

The wonderful Michelle
The wonderful Michelle

‘Before you go would you like to come and see Penny. She will be on Maternity leave when you are next in.

Penny is one of the 3 oncology nurses that make up my treatment team along with Gill, Kirsty and the good Dr. We walked back through the hospital together to go and see Penny. It was a delight to see her and she was looking so incredibly well but all too soon it was time to go but departed happy in the knowledge that Penny was taking some well earned leave to bring another precious life into the loving arms of a loving and caring family.

I was leaving the hospital happy in the knowledge that this quarter we had beaten the beast again. That it was stable. That all was well. I have a wonderful team in the hospital who look after me so terribly well and am so very hugely thankful for them. Thank you to the Good Dr, Kirsty, Gill and Good luck Penny. May God hold you and your precious new born in the palm of his hands.

This was, as I took the train home, to be the end of my post, but then I met Michelle. I hadn’t noticed her on the carriage as I sat in the corner, head down, with the laptop on my knees, writing my post but it was as we arrived in Stirling that I spotted her with her stroller looking as if she wanted to get off the train. I offered to help but she declined so I let her past and then realized with horror that I should have gone first in order to help her out of the door, across the gap and down onto the platform. She managed fine but I came out behind her and apologized to her for not having been in a position to help. She thanked me, told me not to worry then asked me what I did. As we walked through the ticket barriers I offered her a flyer and started to tell her about the challenge. I invited her to pour a glass of wine or a cup of tea and watch a video and then maybe even read up on the journey. Michelle asked me a myriad of questions and then started to share her own experiences of the sorts of things I could be considering for further treatment. So we stood and talked just on the edge of the station. I discovered that she was from Washington DC originally but now here and part of an Orthodox church who are due to celebrate Easter this week. Michelle wanted to take my story to them and ask them to pray for me. I thanked Michelle enormously and holding each other’s hands offered each other God’s blessings. I had to run to catch my bus but it was a delight to meet you Michelle. Thank you for your kind offer to take me forward in to the Orthodox Church for Easter to pray for me. I would be deeply honoured and touched if you could. Thank you.

A great day with lots more days to come.

Yours aye