Eil Drink To That

I know where she gets it from. Hell, it’s only take me the best part of two years to work it out, but now I know…

Like mother, like daughter.

Eileidh gets her incredible resilience and fighting spirit from her mum, and who knows, maybe even her cheeky wee smile too, but Gail doesn’t get much of a chance to practice that these days. Her life is so tough. The post that Gail put up in the week was simply outstanding in its soul bearing wretchedness. Where did that come from? How can you possibly write something that smacks you right between the eyes at a time like this? I’m a sixties soul brother fae Birmingham, brought up on a feast of Motown, Stax, Atlantic and Chess records. See if Otis Redding was with us today, he could have taken Gail’s searing blog and turned it into Gail Blue. Otis Blue was his finest work, his signature album and one of the greatest pieces of music ever laid down. Gail Blue would have stood alongside it, maybe even delivered by Aretha today.

Gail, I only have to flick through the comments on your stories to see how much respect, admiration and love that Eileidh’s supporters have for you. I know it’s hard, we all know it’s hard (actually we haven’t got a clue how hard it really is for you) but please, please, just keep doing what you’re doing: take each day at a time and we will all be standing with you. Eileidh is a mini you and every last ounce of strength that she has is because of what you are giving to her.

Now: road trip…

Bonnie and Clyde. Thelma and Louise. How’s about Gabby n Yompa. We ain’t planning on going robbin’, and we ain’t plannin’ on going stealin’ but we are plannin’ on pulling off the finale to end all finales. Remember last week’s story Down Under? If that was the bones, then this week it’s gained a wee bitta flesh.

Here’s the deal: LifeCycleForNeuroblastoma will end on September 30th 2018. In a world where everything happens for a reason, even if we don’t always understand what that reason is, the final days of LCFN are going to be the most poignant goosebumply, spine tingling days of my life. September is Kids Cancer Awareness Month. The most miles I ever rode in an LCFN month was 1112 in November ’15. Looking back I can’t believe I did that. I dubbed it a platinum ride at the time because I never saw daylight in any of those miles. 250+ four weeks in a row, in the dark in shit weather: platinum miles. But I always dreamt of titanium…

Now I have the chance.

I’m gonna ride from Brisbane to Adelaide in September 2018: 1200 miles. With Gabby riding shotgun in the van. 1200 is the titanium ride I never thought possible: so what better way than to do it on the final journey, to the home of the Strayan support team. The Adelaide Velodrome is where Anna Meares and Jimmy Harrington held the LCFN flag in December ’14. It’s the same venue where half of Adelaide (slight exaggeration – ed) will hold the flag at the end of the journey. The flag still says NCCA, that’s how long this gig has been going: they’ve been Solving Kids Cancer ever since Jane and I walked into their New York office back in the summer of ’15. I’m gunning for 40,000 miles. I suppose I could go on to do fifty but my body’s showing increasing signs of breaking. The back that used to be sore off the bike is now also sore on it. The quad that’s been bugging me since last summer still is. The hernia op that I had in January ’15 is grumbling. It all adds up and the signs, as far as pushing my body beyond its limits is concerned, is that enough is enough. I’m still 10,000 miles away from being able to set up the 40K finale in Adders, and if that’s gonna happen, then I’ve to ride at least 23 miles a day, 25 days a month, every month between now and then. And there’s another winter in there: but I’ve beaten four so one more won’t kill me.

There’s something about this journey that nags away at me. Constantly. It’s the fact that you can only ever achieve anything by putting yourself on the line. Constantly. Sixty nine times I’ve ridden 200 miles in a week, including the remarkable 36 in a row in 2015 going into ’16. That run started with Eileidh Paterson at Forres Mechanics FC. 200 mile weeks are feckin’ hard, believe me. And I haven’t done one since September. See when you haven’t scaled a peak for a while, it starts to eat away at you, like you’re never gonna be able to do that ever again. It gnaws away at you. And all you can do to stop it is work: work like fury, against all of your demons, to prove, just maybe, that you’ve still got it.

Cue this week…

It’s Friday night and there are two days left on the road before the book closes. 9,000ft of climbing since Monday and 137 miles. That’s woeful compared to the halcyon days of teaching the Fenwick Muir who’s boss but going big every day is really, really hard when you don’t actually have anywhere to go to. At least back then I had my work to ride to in Glasgow. Nowadays, I’m riding from a brain frazzling four hours sat on my own with Dennis, to another four hours sat on my own with Dennis. Dennis is a cat by the way. He kind of lives next to my desk when I’m working, and he sleeps through the time that I’m away. I guess he never really notices, after all he is a cat.

So let’s hark back to Gabby n Yompa for a moment. Gabby is my Inverness Caley Thistle supporting mate fae Brizza. As Aussie as they come: married a girl fae Inverness. Ring a bell? I did the same. I first met Gabby in Diggers in Edinburgh before Hearts away many moons ago. This big, tall ginger Aussie came up to me, clutching a beer, and said “are you ITN”? I was. My handle back in those days was InterTheNet so that dates it straightaway. I’ve been Yompa since 2006 when I walked pretty much the direct line fae Inverness to Dunfermline in two days: all 140 miles of it. The yomping bit relates back to the Falklands War when the marines lost all their helicopters on the Atlantic Conveyor and faced with an Argentinian resistance sixty miles away over the mountains, some wag remarked “it’s that way”. So off they went, carrying all their stuff: yomping was born. That’s pretty much the way I’ve led my life. Take on the unlikely, the improbable, the impossible, and just keep going.

Does that remind you of anyone?

Eileidh.

We both have birthdays next week: the Princess will be five and I’ll be sixty four. Not much of a difference in the sense that we’re both kids at heart but as Gail so strikingly put when she opened her soul the other night “I’ve had my childhood, my teens, been married, had children. She deserves to have the same. She fights with all she has on a daily basis & still that doesn’t seem to be enough. What do I have to do? What more can I do? Have I missed something? Have I not researched enough? There has to be something”. Right there is why this matters. As I’m sat here penning this and as you’re sat there reading it, we’ve all had our lives. Yeah, we’ve made a few mistakes along the way but they were ours to make. Right now, Eileidh doesn’t have that choice. Every day that she keeps smiling is a bonus, not just for her but for all of us. She is our leader, our Princess in Chief, our Ms Chief Maker. She’s the wee girl that we just want to get better.

If there’s any light at the end of the tunnel, it may come in that shape of international co-operation in research. In my day job, I’m currently studying about SNOMED-CT. Google it: just Google it. This time next year, SNOMED-CT will be rolled out in the UK as the new standard in clinical coding in healthcare. SNOMED-CT is the international standard, and it will replace the UK read codes that have stood us in good stead for the past 25 years. The reason that SNOMED-CT is important is because it’s international. There are people across the world right now, developing content in the new language just so that specialists all over the world can share ideas and more importantly share data. I’m a data man, not a doctor, but I can see the potential for advancing research faster than anything that we’ve seen before. I sat an assessment yesterday and it was the scariest exam I’ve sat in ages: the content is foreign but the underlying data structures are based on everything that I’ve believed in these last twenty years. If you knew me during the eClipse days, then let me just say that SNOMED-CT is eClipse twenty years down the line: hell, they even have configured features for God’s sake! The money men may have binned all of my creative work back in 2008 but I’ll tell you this: what Ailsa and I designed back then was groundbreaking: people didn’t understand it at first but hell it was good. I look at SNOMED-CT today and I realise that our ideas were bang on the money. It’s a real shame that the people who held the purse strings didn’t invest in us. C’est la vie. Give it a few years, maybe five, and I think you’ll start to see the benefits of a joined up clinical coding system across the world: where research done in one country is readily available in others, for specialists to tap into, a year down the road when the next consolidated release of the software comes off the production line. I’m hugely optimistic about the future of documented research into neuroblastoma, almost as much as I’m dreading the advanced implementation course that’s coming up next, simply because the subject matter – clinical stuff – is way out of my comfort zone. But I need it in order to design the next generation of software tools to help find the kids who are at risk. LCFN remains a never ending journey of discovery.

Now before I finish this week, I want to go back to Gail’s blog. She told a story last night about Eileidh’s first mega radiotherapy session to zap the tumour in her jaw. If I may keep the story simple for us non-medics, the tale is one of magic water versus magic milk. Alternative procedures to the same end is the best way I can understand it. Well Gail, when you read this, please tell Ms Puddles that the LifeCycle Man says that magic water is best and that’s what he takes: every Friday night. I take it from a bottle with a blue star on the front. Apparently 4.7% of its content is what sends me to sleep when I’ve taken enough.

Magic water….

Eil’ drink to that.