Destiny’s Child

If I wrote this once, in my mind, as I was playing Atari Night Driver for real up the M40, M42, M5, M6, M74 and M77 last night, then I wrote it a hundred times. There was absolutely no point in going to bed when I got home, even though it was indeed bed time: my eyes were on stalks. I thought I could brain dump all the emotions of the day but it didn’t happen, at least not in the way I wanted. So by 1am, I was even more in awe of the mothers who sit up all night with their desperately sick children, then document the journey in fine detail, and all done on zero sleep.

Cue take two…

Yesterday I was at the Solving Kids Cancer family conference near Amersham in Buckinghamshire. Gail asked me whether I would like to go, and from my perspective as an activist and a fundraiser, it brought home the significant impact of Solving Kids Cancer’s work in supporting neuroblastoma research. It wasn’t just the presentations, outstanding and hugely informative as they were, it was the passion, the informed questioning and occasionally the impassioned raw emotion from the floor. I counted the tables and the number of people on each. I reckon there were at least 75 sets of parents there yesterday, all seeking answers about why their children were struck down by this deadly disease. As fights go, this is a long one. I spoke with Chris Riddle at lunchtime and he told me that where research sits just now is light years away from where it was when Vanessa was first diagnosed nearly ten years ago: and the pace is quickening all the time Technology, particularly (big) data technology is playing an increasingly important role in not just storing the jigsaw pieces of neuroblastoma, but also in re-arranging them to help provide a step for a hint in finding a cure. There may be 10 billion pieces of sky, but technology has the power to re-arrange them into meaningful information.

In the lunchtime break yesterday, I met Gemma Lowery, Bradley’s mum. We only managed to grab a few minutes because the afternoon session was about the start, but we parted on a note of life’s journey and where it takes us. On the day that I lost my job, Fabiana and Anna, my two mentors at my old work each hugged me and told me that I should look upon this event as an opportunity to seek new goals and new horizons. In hindsight, I’d say that, and some.

Now roll the clock forward…

I’ve been studying SNOMED-CT for just about the whole of this year: first it was the foundation course, which although it’s classed as basic, has enough power to pack a punch and make you go “wow, there’s some amount of potential in this stuff”. The day after I finished the foundation course, I enrolled on the advanced implementation course: that was back in April. The implementation course is the bad boy: that’s the one that gives you sleepless nights and makes you feel inadequate. See when West Brom won the Cup in ’68? They were taken to four replays: one by Colchester in the 3rd round, another by Southampton in the 4th round and two by Liverpool in the quarters. I can top that: I’ve been to five in my SNOMED-CT journey: I had to resit Module B when I missed the pass mark by 0.6% four days after our mam died. And each of parts 1 and 2 in the final exam (ten days ago) I had to resit twice. It’s not that I’m thick, it’s just that I’m a software guy and sometimes it’s hard to get your head round all the medical stuff. But I’m still hanging in there.

I sat the final exam, part 3 of my finals, at 5am on Wednesday morning. I went into it knowing that I needed 68% to pass the course. As all the other exams and projects are already signed off, this was it: the final showdown. As this exam was being manually marked (as opposed to automated marking on clicking the Finish button), there was an advisory note that the results may not be released for two to three days as the marking and data upload happens in batches. That’s been four days and counting…

Passing this course matters for a whole host of reasons: SNOMED-CT will become the defacto standard for clinical healthcare in the NHS from April 2018 and less than 50 people have graduated from the implementation course in the UK: in Scotland, that number is two. I hope and pray that I have done enough to become the third. You see LCFN isn’t just about the bike ride anymore: that just got me to where I am just now. As I said to Gemma yesterday, I’m on this journey because it was meant to happen this way. I listened at the conference yesterday, took copious amounts of bullet point notes, but came away with one message ringing loud and clear in my ears:

Saving kids’ lives in the future depends on data: big data, so much data in fact, that only the most powerful computer systems can process it effectively. All of that data lives in relational databases. So does SNOMED-CT. Remember where you read it first, because the SNOMED-CT expression constraint language has the potential to be the key that opens the door, and it’s for that reason that I’m waiting like an expectant father on that 68% score.

LCFN may be long past being just a bike ride, yet the bike remains its beating heart. It would be easy to dismiss my SNOMED-CT finals, and yesterday’s trip to Landan (well, Watfordish actually) as the only events in an otherwise ordinary week: but that does a huge injustice to the other stuff. I will go out today, as soon as this story hits the airwaves, and bag my 94th two hundred mile week. It’ll be ten in a row for only the second time: the last one stretched out to 24 weeks before I crashed on black ice at half five in the morning and wrecked my thumb. That journey, the one that screams “never give up” is the mundane story, the one that gets you up at 6am when it’s 2C and lashing with rain outside, to bag another 30 miles.

The milestones sort of keep on coming…

Tomorrow will be the 1000th day of LCFN cycling. Thursday saw off the 36K barrier so a quick swatch with the calculator will tell you that every one of those 1000 days has carried an average payload of 36 miles, or three hours on the road, all year round, and in all weathers. That’s the bit that tags me as a stubborn, relentless old git. This weekend also marks the fourth anniversary of the start of the LCFN blog: this is the 218th chapter of the story that began the time Big Wullie egged me on to pen something about the bike ride for The Celtic Network.

I’m going to leave you this week with a dream: it’s something that’s been playing on my mind for a few weeks, but an idea that I’ve had precious little time to do anything about, because of the exams and stuff.

I’m planning to build a virtual database of fictitious test patients, ages and genders spread evenly across the spectrum. Then I’m going to do some research into the estimated percentage of incidence of the underlying symptoms of specific diseases: for example, say the disease is type 2 diabetes: what percentage of people aged 20 to 30, 30 to 40, 40 to 50 etc, have a BMI in the ranges of 30 to 35, 35 to 40, 40 to 45 etc. Do you see where I’m going with this? I plan to seed my database with the precise number of underlying symptoms to enable accurate searching. And because the number of recorded symptoms is known, then it will be much, much easier (and hopefully quicker) to determine if the searches are working correctly. The database will enable the development of a new breed of SNOMED-CT enables queries, and I intend to put the business front end of that, the requirements spec, in the hands of the experts, the clinicians. My job is to provide the tools of the trade.

I headed south on Friday morning with goosebumps tingling down my spine. I had a kind of inkling that this journey was different from all of the others. It was just me, my motor, my playlist, and my hope that I could see it through to the end. Despite standing in the outside lane, in the rain, chatting to another driver, in 12 miles of standing traffic on the M40 yesterday after an accident at the next junction, a bit of nous and cross country yomping got me to the conference only half an hour late. The whole LCFN adventure has been a bit like that. Nothing ever goes the way you expect it to. You’ve just got to stay the course and hope to see it through.

After yesterday, I feel like Destiny’s Child.

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