The Hardest Words

I suspect that the majority of people who read the blog also follow Eileidh’s Journey. So to those people I offer an apology upfront if you’ve read most of these sentiments already this week. This has been the hardest week in Eileidh’s short life. I don’t think I stand alone in almost not being able to read Gail’s daily blog of life on the ward: pain, unendurable pain; coupled with little or no sleep. Poor Gail must be exhausted, not just physically but emotionally too. Right now, she’s the strongest woman on the planet, bar none, and she has 772 members on LCFN on Facebook holding her up, along with 7,862 followers on Eileidh’s Journey.

How I wish that Gail’s searing blog of how Eileidh is currently fighting for her life would somehow find its way into the gaze of a deeply embarrassed producer of Coronation Street. This is reality.

I’m not sure which is harder: Gail finding the strength from somewhere to commit her experiences and thoughts to words, or our inability to take it all in because we simply cannot comprehend what poor Eileidh is currently going through. I simply cannot read it all in one go. I have to break it up into wee bits, read a couple of paragraphs then let my mind rest a moment, before returning minutes later for a quick recap and the next sentence, much like a Channel 4 reality show where they spend the first two minutes after the break telling you what you just watched in the five minutes before it. I simply don’t know how Gail does it. I certainly don’t know how Eileidh is getting through it. You think you’ve come through the worst, only for the next day to be worse again. Heartbreaking, every single episode.

And all this is unfolding 400 miles away while I’m down south exploring the opportunities that exist in predictive healthcare. Some of you know about my football spreadsheet: the one that tells you that 1-1 is going to be the most common scoreline in every division in England and Scotland this coming weekend. Predictive healthcare works in exactly the same way across a range of diseases, many of which are scheduled to bring the NHS to its proverbial knees if left unchecked. I’m working with a team of highly skilled clinicians, and together we are developing tools that will enable health professionals to become proactive instead of reactive: turning healthcare on its head. And although we still have to get our data model validated, we do have a prototype for childhood cancer. Only time and a lot more hard work by the team will verify whether it works. This is what happens when you get released from your employer after 40 years in the software industry, and you have a passion for making a difference. This is what happens when the ideas inside your head are nurtured and watered in a way that allows them to flourish instead of being strangled by control. I don’t know where this road will end: I’m eighteen months from retirement yet right now I feel like I have a contribution to make for the next ten years. And then some.

And then there’s the Australian connection…

I’ve been doing this now for just over three years and I’ve never felt so attached and so part of what’s happening Strayanside as I do currently. It reminds me a bit like I felt after I’d been in Scotland for about ten years. Scotland isn’t like England, not one bit. Scotland is full of people who live passionately for today, and for other souls. England is a country of emotional borders and barriers: this bit is mine and thou shalt not have. The folk on my Australian timeline are very much at the Scottish end of the scale: empathisers one and all. The constant musings and comments back and forth, despite the obvious time difference, across the spectrum of social media binds us all together.

An extension of the whole Aussieness of LCFN came about last weekend when at 11am UK time, 8:30pm in Adelaide, the doors opened and the punters poured in at Jade’s Club ahead of the concert to mark the official release of Frank Loves Joan’s second CD “About A Girl”. I’d been out on my bike in wild, wild conditions on the Saturday morning and got back home half an hour before the gig started. I was hoping that someone was going to do Facebook Live so I could just be part of the whole thing, but as it happened, video footage appeared soon after. In didn’t matter in any case because even though I was bodily in Scotland, my heart was in South Australia.

The bit where you could have knocked over with a feather came when a thread appeared on Facebook featuring a still image of Amelie performing Puddles, Eileidh’s own song, along with a wee story explaining that Amelie herself had just replayed Eileidh’s story to the audience. That single moment made 25,000 miles on a bike worthwhile. That moment made my very Facebook existence worthwhile. I feel truly blessed to have not just Amelie in my circle, but the people around her, including half of her extended family.  It is truly humbling to know that this young lady actually took the time to make every single person who was there that night, aware of neuroblastoma and how it has ravaged Eileidh’s life. I’ve since been told that you could have heard a pin drop in the auditorium when she performed the song live, such was the emotional charge in the atmosphere. Awareness is one hell of a powerful ally when you have it on your side.

Changing the subject altogether, you could be forgiven for raising an eyebrow (or two) when I say that I’ve not been on the bike at all this week, and by choice. Sometimes even I can read the signs. For the best part of two weeks, I’ve been affected by a deep, dull, aching pain in the upper front/outside of my right quads. This particular injury is one I have never had in 35 years of sport, and hell, I’ve had a few (dozen). These muscles are the big drivers on the bike and I absolutely cannot allow myself to get to a stage where they are not working at 100%. Being sore at the start of a ride then masking the pain through lactic acid build up was never going to work long term. So when it got to the point where the pain was there when I was sat in a chair with my feet tucked back underneath, I knew that the time had come for respite. I will take as long as it takes, even if it is only a matter of days, or maybe a week or two: but rest I must right now.

The lead up to the injury is centred on the 69th 200 mile week of my own LCFN adventure, and the increasing daily mileage I needed to do to get there. 26, 27, 25 on the Monday, Tuesday and Wednesday merely gave me a chance, that’s all it was. Unless you go out all guns blazing early in the week, all you’re ever going to do is give yourself a platform. The problem with having a solid base in the middle of the week was that I knew that Saturday was coming and that it was going to bring with it 40mph winds and driving rain, and if I wanted a jackpot under those circumstances, then I was going to have to venture outside for two and a half hours and do it the hard way. No real choice there then. Out into the wind is always the way to go if you have a choice, and use whatever cover you can find, hedgerows, buildings whatever, to offer some kind of  protection. Then, once you’re as far away from home as you need to be, raise the proverbial mainsail and let loose on the home run. Under those circumstances, the journey can be amazingly exhilarating.  And it was. Home, soaked to the skin, but with a familiar sense of beaten it again. Oh how I wish I could bestow those same few words on Princess Puddles right now.

This may not have been the hardest week to be on a bike, nor the hardest week to write a blog: but it’s certainly been the hardest week to read one.

As ever, Eileidh and Gail, you dominate much of my waking day, for yours are the hardest words.

Author: Von Schiehallion

I'm an old endurance athlete who's pulled a few tricks in his time. I ran my first marathon at 19 round a grass athletics track, ran/hobbled 100 miles in a day at 30, cycled from Manchester to Glasgow in a day at 40, kickstarted the Highland March at 50 and now, at 60, I'm doing LifeCycle. Life's too short to sit still for long. I like doing stuff that just seems impossible...

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