Could Do Better

This has been exam results week in Scotland and for a lot of kids it’s the most important week of their lives (so far). I say that but every week in the lead up to the exams is actually the most important, and the pressure builds one week after the next. You are literally only as good as your last effort.

I wasn’t particularly academic at school, although I did scrape into the Grammar School. The problem was, once I got there, I always found the pace of learning too hot, with the result that I was forever languishing around the relegation zone. 25th out of 30: “could do a lot better”, “needs to apply himself more”, “Stephen needs to study more if he wishes to succeed”. These phrases appeared all the time on my report card. Y’see the problem with being down the bottom of the league is that it gets to you: you know you’re never going to be up there with the brainy kids so you channel you energies into other stuff, which for me was football, snooker, Tamla Motown and trainspotting.

When none of that achieving stuff actually mattered, there was always something else more appealing to catch my fancy. I still remember Parents’ Night after my O Level prelims like it was yesterday. It was 12th February 1969, a Wednesday night. The folks went off to get the lowdown on my wretched performance while I headed off to the Hawthorns with 46,000 others to see the cup holders (that was us by the way!) take on an Arsenal side that was to do the double just a couple of years later. If you don’t know the score, there’s no need to look away, you can watch the highlights (all two minutes of ‘em) here:

https://youtu.be/HJlW62epb7c

When the olds got home, I got savaged. The predicted outcome from five years of grammar school education was one O level pass. I think that was English Lit, which is hugely ironic cos I think I’ve only read about five books since (and two of them have been about The Troubles). It would not be an understatement to say that the old fella was ragin’ when I got in, fish supper still in hand. Soon took the smile off my face.

I’m not sure that day/night was the start of my renaissance because I struggled just as badly two years later when I got to my A levels, but the rocket up my backside from the old fella, which strongly resembled KT’s effort the other night, at least salvaged something from that dreadful exam season. The highlight was undoubtedly the grade 1 (75%+) in Biology, having bagged a grade 9 (25% or less) in the prelim. I’d like to claim the credit but I have to admit that as I’d already given up on the subject, I did zero revision and spent my time scavenging elsewhere for scraps off the table. I do know however, that my saving grace was the fact that two of the questions were to do with interpreting graphs to do with plants n stuff and I wasnae bad at graphs. Those two questions were a tap in.

But that wasn’t the only “see, I can do it” moment of that summer: I got another grade 1 in English Language, primarily because the essay bagged about half the marks and I remember the question to this day “recount an event that you’d been looking forward to, that turned out to be a disappointment”. Easy peasy, lemon squeazy: FA Cup semi final at Villa Park: City v Everton. Yes, yes, I know West Brom were in the other semi against Leicester at Hillsborough but the old fella wouldn’t let me go cos of my academic grounding. So I got a ticket for the game at the Villa instead. Not sure he even knew till the day of the game. Anyway, the game was rubbish, I was still about 5 foot nothing in the middle of all these six foot scousers, so I had the bright idea of getting right behind the crash barrier at the ‘cross the way’ gangway halfway back up the Holte End. That was the day I realised how dangerous football terracing was when loadsa people actually turned up. That was never an issue at West Brom. When the play was down our end and the surge came on, I got both wrists pinned under the barrier. I could barely write for days. Anyway, the silver lining to that day was that it got me top marks in English Language.

But the real game changer for me didn’t come until I got to Stafford after I left school.

University was never on my radar: even back then, Uni was for the kids with brains. I got the scraps off the table and my C in Physics and E in Maths got me a place at Polytechnic: it was a place that the also rans went to: the secondary modern of higher education. It was there that I finally got the bug for learning. The first year went okay, sufficiently okay in fact to get me launched onto an honours degree course in Computer Science. The second year went even better. The third year was out in industry to get some experience so I moved to Manchester and basically had a ball: work, socialising and running: that was basically me. But those twelve months cost me a first class honours. My final year back at Stafford went something like lots of A and a B but the C from that year out in the big city cost me big time.

And I never forgot it.

Now the reason I’m telling this story, apart from the fact that it’s exam results week, is that sometime, you need a right good kick up the arse to get yersel’ going again. My old man gave me one that February night back in 1969: I recall I gave wee Rossie a watered down version after I’d been at his standard grade parents’ night about twelve years ago.

Well I can tell you now that I gave myself one a month ago. Off the back of two passings, two funerals, two weddings and a holiday, I was all over the place. But LCFN has taught me one thing above all else: every day is a new day. Every day is a new opportunity, and if you can manage to string something together from the depths of despair, then sometimes, good things happen.

That was me in the middle of July.

I decided that the only way out of this emotional mess was to string summat together. That Tuesday afternoon, driving back up the road in 28C and no air con, I’d already decided I was going out the door when we got in. I left the house at 7pm. I never go out that late, ever. But I did and I brought it home: a 30. Thirty’s are crucial cos they’re out of yer comfort zone. Day after day, they make yer knees hurt. Every single day, they make yer quads hurt, especially round here where it’s all hills and strong winds.

But day after day, those 30’s kept coming. First it was one, then two, then three. Three’s good, cos it’s better than two. But not as good as four. No problem, let’s make that four, five and six. Tonight, that run stands at twenty five. The most 30’s I’ve ever done in a row is 28. That record’s going on Tuesday. That boot up the arse was as much my frustration that neuroblastoma had taken Eileidh as it was that I knew I needed a new goal. As it turns out, that goal, albeit a short term one, is going to be achieved next weekend.

Next Saturday is the fourth anniversary of LFCN. I’ve looked at the numbers and year four has not been good. I damaged a quad muscle twelve months ago going for a King Of The Mountains gig on Strava and it cost me seven weeks out injured. Today, that same injury is even more sore than it was when I did it. I’ve just become accustomed to the fact that it’s probably never going to heal until I finish, which is at least fourteen months away. Having said that, taking this injury into the Australian gig, where the workload is going to be around a hundred miles a day, does concern me.

However, let’s celebrate something, just this once…

I know I keep going on about these two hundred mile weeks but they are my blue riband metric. Believe me, they are feckin hard to do. So whenever I bag one, I tell myself that I’m still doing okay. Late last week, I started to realise that if I pulled my finger out, as in really pulled my finger out, I might make a cake day anniversary next weekend for 33K miles: except the asking rate was sky high. Sky high means a tad under 35 miles, every day, for 24 days in a row. See when I say that those 30 milers kill yer legs: 35’s are worse.

But two weeks of 230 followed by 240 at least kept me in the hunt. But they didn’t bring the asking rate down. Not one bit.

Cue this week…

It’s easy to discount daft excursions, like cycling to Inverness fae Motherwell, or cycling back down the road from Forres to Glasgow, on top of the regular LCFN stuff, but parking those for a minute, top of the pile is 277, although in reality it’s only third on the real list. Second is 300 and that’s out of reach.

There are two days still to go this week and the 82nd double hunnerd is already on the sideboard. I’m gunning for that 277. To wipe that off and park this week on the third step of the podium would be some result. I’m thinking that 280’s on the cards.

See this boy?

Could do better….

The Mirror Man

For just a few weeks, we led parallel lives. Except that mine was remote and nothing like as intense. Any tears that I shed were but a mere trickle compared to what Gail has known these last five weeks. It will be five weeks tomorrow. I remember the phone call: I remember that I was already booked to be heading four hundred miles in the wrong direction. But it didn’t alter the fact that I cared.

I still care.

I look at the posts, and I know that I’m not alone. I’m not even in a minority. If Sky did a possession stats thing just now, Eileidh would be sitting there with about 70% of the smile market. Except it was was never that easy. That was just the stuff that we saw: her followers, her admirers, the people who just wished that she would do the magic one more time and beat this thing.

But it didn’t happen.

Gail borrowed this from a lady called Zoe Clark-Coates:

“It’s kind of shocking when your world falls to pieces and everything and everyone around you carries on with life. How can the birds continue to sing? How can people carry on loving life? It is like you have become frozen in time and are now watching life like a movie. As the weeks and months roll by, life becomes more normal again, but you will never forget that point in time where life stood still”.

Life stood still for me on June 9th when our mam died. Her time wasn’t even up. It came about because of a set of circumstances that I’ll never understand or get to the bottom of. But it happened and I have to move on. But I couldn’t/didn’t do that for about six weeks: I was mentally paralysed. The week after our mam died, Eileidh married Harrison. The week after Eileidh married Harrison, it was our mam’s funeral. The week after our mam’s funeral, Eileidh gained her Angel Wings. That was the schedule. That was the storyline coming down the tracks. For five weeks, I was a complete mess.

You see the thing that Gail and I shared in common for those few short weeks is that we both knew it was coming: it’s just that neither of us knew how quickly, how suddenly, and with such force, life would be taken from us. Gail described the small room, and how you knew that if ever you got ushered in there, the news could only be bad. I was in that small room in 1972, five days before before cancer took my old man. We didn’t know it would only be five days, we thought it might be a month, maybe two. But life isn’t like that. I was nineteen and that was forty five years ago. On June 8th when I arrived at our mam’s bedside, it could have been forty five minutes ago. You never forget.

So I watch from afar, not really knowing how it is to be in Gail’s shoes, but it doesn’t stop me thinking about her, and Callum and Cerys. I think about the whirlwind that’s hiding in the clouds. I think about the havoc that’s no’ happening anymore. And I think about Dixon. I think I only saw Eielidh and Dixon together once. She adored him. Two wee monkeys together, having fun. It takes a cat person to know a cat person. Puddles was a cat person right enough.

The way it worked out for me, Eileidh’s Celebration Of Life was the day before we went away on holiday. I don’t drive much these days so that was a driveathon and a half. Aberdeen and back on the Monday: Chester on the Tuesday. Then Naples (thankfully, no’ a motor).

When we got back, I had to sort myself out: quite literally had to sort myself out. I’d done 64 miles in two weeks, and hee haw work to talk of. I was a mess. Still. So drastic action was called for: cue SNOMED and LCFN.

If you’ve been following this story for the past few weeks, you’ll know that I’m currently engaged in a love hate relationship with SNOMED-CT, the clinical healthcare software that coming to a GP practice near you on April Fools Day next year. Yes really. Even the Tories couldn’t have scripted it better: forget the Millenium bug and Brexit. SNOMED day has the potential for seriously fuck up the NHS. But that won’t happen if the boffins get it right. SNOMED is seriously good shit. So I’ve spent the best part of this year, in and around my real work, trying to get to grips with the new technology. Complex doesn’t even tell the half of it. You’ve heard of SAP, yea? Well SNOMED is to the human body what SAP is to an automated factory: everything’s hunky dory until something goes wrong, at which point you’d better have your best guys on the job.

Passing the advanced SNOMED-CT Implementation course is my number one objective for 2017. It even comes ahead of a zillion miles. I know, if I make it through the next three months, that I have a real chance to make a difference: useful stuff, like finding people who are actually ill, but don’t yet know it. It’s the stuff of science fiction: and of my dreams. When my previous employer told me fifteen months ago “son, we don’t need you anymore: we’re letting you go”, they could not have known what impact their shortsightedness would have on the wellbeing of mankind. Your loss, my gain.

You see, the way your history is going to change, on your medical records, will be ground breaking when it goes live, and hopefully for the better. Whereas the old clinical coding system was just a library of near on 350K unique codes that all meant something in isolation, the new stuff is all inter-related: the power and the flexibility is enormous.

And for the record, neuroblastoma has a unique concept id: 432328008. And it has subtype children: 81562007: Adrenal neuroblastoma. 704152002: Metastatic neuroblastoma. 414676007: Metastatic euroblastoma of orbit proper. 281560004: Neuroblastoma of brain. 281565009: Paraspinal neuroblastoma. 281564008: Pelvic neuroblastoma. 281563002: Thoracic neuroblastoma. 281566005: Abdominothoracic neuroblastoma. They might just look like a bunch of numbers, but not when you have a logic processor sitting in the back end, able to join up all of the dots and turn the relationships back into words and phrases that we mere mortals can understand. I have to get through three more modules before I can think of cutting I’llloose on this research work. But I know it’s out there, and I have half an idea what it is that I need to do. I just need to suss out the other half now.

The week’s miles have been littered with pain. I’m now coming up to the anniversary of knackering my right thigh chasing a Strava segment, and while it lets me away with it if I promise to be good, most of the time I’m not. So tonight’s it’s sore: feckin sore, and all because I’ve driven hard two days in a row. Round these parts, anything about 14mph average over two and a half hours is good going, not just because of the hills but because it’s so feckin’ windy most of the time. Yesterday was 34 miles at 14.6. Today was 32 at 14.3. It feels like I’ve got a dead leg, except I haven’t. It’s been there for eleven months and I’m starting to suspect it’s to be my bedfellow now till the end of time. But at the end of the day, tomorrow will rack up the 81st double ton of miles, and there’s just the wee smidgering of a chance that the four year anniversary on 19th August might also be a cake day: but I’ll need to go some: I still need 520 miles.

The last few weeks have been a hard shift, both mentally and physically. Coming off of the back of the #ForeverFive series between Eileidh’s passing and her Celebration Of Life, then the Napoli Nil week, I’ve managed to pile in eighteen 30 mile days in a row. It wrecks yer legs, believe me. Yeah, the first few were easy peasy, but see these last six or seven: different ball game. This is where the mental side of LCFN takes on the physical: and there can only ever be one winner.

I look at the last few weeks and all I see is pain. Sometimes all I feel is pain. But somehow you get through: just enough to go through it again the next day. Repeat.

Sometimes I feel like I look in the mirror and see Gail, but on a smaller scale.

The Mirror Man.

Imagine

Imagine being out before seven

It’s easy if you try

No motors to annoy us

No chance of a long lie

Imagine all the people

Cycling for today… Aha-ah…

 

Imagine there’s no cancer

I know it’s hard to do

Nothing to fund or fight for

And no research, too

Imagine all the children

Living life as they please… You…

You may say I’m a dreamer

But I’m not the only one

I hope someday you’ll join us

And the world will ride as one

Imagine no obsessions

I wonder if you can

No need for drips or chemo

A motherhood of man

Imagine all the people

Caring all around the world… You…

You may say I’m a dreamer

But I’m not the only one

I hope someday you’ll join us

And the world will ride as one.

 

I don’t know why that just happened. I was out there today, battling into a raging headwind, and trying to work out what route to do. It’s been a bit of a shit week: I had back wheel punctures on both Monday and Tuesday, then on Wednesday morning, when I had to get out early because I had an online meeting at my normal bike time, it absolutely pished it down: soaked to the skin. Yesterday was a nice day, albeit as windy as hell, and today I found myself doing almost exactly the same route to the seaside just so I could come back on the wind: with a sore leg.

 

Actually I do know where the John Lennon remix came from. When I got to Torranyard today, I’d already got 7 miles in the bag courtesy of a loop all around Stewarton before I left town. So I reckoned that all I had to do to bag another 30 (that’s now eleven in a row by the way: the record’s twenty eight) was to keep going for another 8 miles, maybe add a mile for contingency then turn around. And it was at that point, when I was thinking that, that I thought this…

 

Imagine if I had a make believe job in Saltcoats, that I could cycle to every day. Then imagine, when I got there, that they said “not much happening today, take the day off”, so I’d just cycle home again. There’s merit in this madcap idea. Saltcoats is into the wind, as in into a mad, mad prevailing south westerly wind 90% of the time. Payback is on the return leg. But not only that, Saltcoats is home to that stretch of coastline that they like to feature on the news whenever the weather is really wild in the winter: the bit where the sea crashes over the railway line on Reporting Scotland. Well between the sea wall and the railway line is the bike path. I fancy a bit of that come the winter.

 

Something else happened this week that got me thinking back. I found an old blog from January 2014 while I was rummaging for something, when I’d only been on the road for six months, and in it, I was trying to guess when I’d hit my original 25,000 mile target and stop riding. If I tell you that the story was entitled “They Think It’s All Over: It Will Be in July 2017”, you’ll probably understand why this particular piece caught my attention. That projection was based on averaging 140 miles a week from then until my retirement next year. Well a couple of things have sabotaged that idea: I got made redundant two years (and one day) before my retirement date, and the work I’ve been doing since I left the old place has been so inspiring that I’ve given up any idea of chucking it next year anyway. I love my life just the way it is. I’d happily keep going for another ten years.

 

Anyway Eleanor, a good friend of LCFN for many a long day, and a mummy back in the days when Finn and Joe played cricket for Kilmarnock as kids, commented on that post “that’s how things looked then. Shows the value of setting goals then smashing right through them to raise then bar further and higher. Hope you are planning a “compare and contrast” blog on this”.

 

Well with the four year anniversary just three weeks away, now seems as good a time as any.

 

I looked back in Strava to July 2013 to rediscover what it was that set the scene for LCFN. I looked at Wednesday 31st July. It reads “Commute to the bus. Sunny. 13C. No wind. 4.6 miles”. Then coming home it reads “Commute home. J24 MTB. No wind. Cloudy, 19C. 15.0 miles”. J24 MTB is the folding mountain bike, branded as Joe 24, that I was using back then. 26” wheels, folds in half, goes on a bus, or at least it did back then: I think they’ve changed the rules now and banned big folders. That period is littered with rides to the bus in the morning, and rides all the way home. It’s also interesting to note that the folding mountain bike was chugging along at 15mph over the Fenwick Muir. I’d be happy with on a road bike!!!

 

LCFN started in earnest on the 19th August, so I’ve got three more weeks to clog the miles and get as close to 33K as I can for the birthday. But going with that theme of smashing goals, it’s interesting to compare 2014, 15, 16 and 17 to see how they stack up.

 

Comparing year on year to this date, 28th July:

 

In 2014, I’d racked up 5,266 miles.

In 2015, it was 4,097 miles.

In 2016, the wretched year that threatened to derail the whole project, the total was 4,264.

In 2017, the total’s 4,723.

 

2014 wins by a short head but considering I was cycling back and forth to Glasgow five days a week for most of that year, this year runs it a good second, especially when I’ve been working from home and only out the door once a day. At the end of the day, the only metric that counts is how much you want it: talking of which…

 

This is from the Shock And Awe blog back in May:

 

“I’m turned on by ridiculous stats. When I was a kid, I remember Geoff Boycott scoring his 100th first class century, ironically enough in a Test Match at Headingley, his home ground. A hundred hundreds, I’ve always thought that had a special ring to it. Well I’ll let you into a wee secret…

I dream of a hunnerd two hunnerds..

I kinda like the thought of doing the hundredth one in the week of my 65th birthday next March. That means I need 27, ooft that’s a Wum of double tons: cannae give up now. The next few weeks are gonna be barren: next week’s okay (74) but the week after that I’m down south with work (a rest!!!!) and following that we’re into the holiday season with odd days away here, there and everywhere. All it takes is one day off and that week’s a gonner. So let’s break it down: let’s make it 80 two hundred mile weeks by August”.

August is next week. I’m sitting on 79 double hunnerds. I need 35 from the next two days fto make that 80. So let’s just call it 80. By August. Last year I only clocked up one double ton after July.

There are 33 weeks left until I get my pension: the challenge now is that I’ve to convert 20 of them into double tons. Old Geoffrey would be proud, not necessarily by the outcome, but by the application: shit weather, dig in and don’t give your wicket away cheaply. By cheaply I mean “hmm, looks a bit wet today, don’t fancy that”.

Now before I finish this week, two things have caught my eye…

The LCFN blog, which topped out in 2016 with 4,260 hits, has bagged 4,910 in July (yes, you did read that right). No month has ever has 5,000 hits (obviously) and it’s 100% down the smile of Princess Puddles and the spirit of Gail, her amazing mummy, that we’re looking at that stat. LCFN and Eileidh’s Journey have been as one for the best part of two years and it ain’t ending anytime soon. If you want a wristband (yes, we still have a few), then message me. All funds raised from the wristbands will go towards Eileidh’s memory.

The other thing is that Jimmy Harrington is also reminiscing: about his walk around Australia. Jimmy’s four year anniversary is coming up too and I think he’s got itchy feet. He’s doing a video and asking for contributions from folk that he met along the way, either in person or through social media. Big man, I’m gonna do you a special from the wild west coast of Scotland in the next few days. If it wasn’t for you, and for Brainchild, there would be no Strayan LCFN: there would have been no Puddles CD and there would have been no wedding song for Eli n Hazza. Jimmy, you were the man, you are the man, and you will always be the man.

Imagine that four years ago…

Eileidh’s Legacy

Only two things will change the stats for the better: more research and greater awareness. This week’s LCFN bedtime story is all over both like a rash. Are you sitting comfortably?

Something has been bugging me for a wee while, and through not wanting to appear rude or awkward, I said nothing and did nothing. But sad as Eileidh’s passing has been, the only solution to prevent more Eileidh’s in the future is through research. Neuroblastoma is a hugely challenging disease for the medical specialists to understand, and understanding is the key building block in being able to find a cure. What we do know is that most cases aren’t diagnosed until high risk stage 4, and unless you’re lucky enough to be a stage 4 patient in Coronation Street, the odds aren’t stacked in your favour. I’m saying that because harsh as it sounds, fundraising for end of life is not going to help prevent children being diagnosed a generation from now. As Camelot like to say in promoting the other lottery, it could be you…

So I’ve made a conscious decision going forward: LCFN funding will be split two ways:

  • Neuroblastoma Australia
  • Solving Kids Cancer

I’ve listed them that way round for a reason. Neuroblastoma Australia support laboratory research: Solving Kids Cancer support clinical research. They are different but complementary.

Let me explain: I took these definitions straight off t’interweb:

  • Laboratory research is research that is conducted in a room or building equipped for scientific experimentation or research. Laboratory research attempts to investigate naturally occurring behaviors under controlled conditions with manipulated variables.
  • Clinical research is research that directly involves a particular person or group of people, or that uses materials from humans, such as their behavior or samples of their tissue.

Do you see the difference?

Do you see that one precedes the other?

Do you see that one feeds into the other?

In my eyes, they are complementary!!!

Our Aussie friends are doing the hard miles of trying stuff with cancerous cells and finding out what works (and what doesn’t) in laboratory conditions. They are also trying to find out how to personalise the medication so that one variant of cancer can be treated differently from another. If any of my old runners happen to be reading this, you’ll understand what I mean: this medication is configured for you and you alone. It is your personal programme designed to make you well again.

But once you’ve done the hard miles and got yourself a potential solution, you’ve got to test it. You cannae go straight from the laboratory to a 100% cure rate: you’ve got to find out how it works, study the results and feed that information back around the loop. You’ve heard of continuous improvement: this is continuous improvement at the sharp end: the life or death end.

I hope that you understand where I’m coming from. I don’t want to attach myself to another family’s cause, and repeat the cycle of survival by chance. I want to make a real difference at the front end of the disease: to kick neuroblastoma in the ass before it gets a chance to deliver its lethal payload. Oscar, Vanessa and Mackenzie may have got me started on this road but Eileidh is now my driving force.

LCFN will no longer be funding the nice fluffy stuff: it’s going solely after the bad boy. Neuroblastoma, I’m coming for you…

Then there’s research’s wee sibling: awareness…

Suppose that your GP practice has half a dozen doctors: we’ll call them Dr Osborne, Dr Fraser, Dr Williams, Dr Brown, Dr Talbut and Dr Kaye [there’s a pint, by the way, for the first person to correctly state where those names came from]. And suppose that due to the way that the rotas work, only three of them are on duty at the same time, and the make up of the mix varies from one day to the next. And because it’s a busy practice, you have to wait a week to get an appointment and take pot luck with who you get. And to keep things simple, let’s suppose this story starts in January.

Your three year old has got a fever. You manage to skip the waiting list and get an appointment the next day with Dr Osborne: “Hmm, wee Dennis appears to have a fever”. Medication duly prescribed and off you go.

A month later, Dennis is screaming with a sore head. Calpol hasn’t sorted it so off you go again: this time you get Dr Fraser: “Hmm, wee Dennis appears to have a headache”. Medication duly prescribed and off you go.

Two months down the road, you notice that wee Dennis is sweating a lot in the night for no apparent reason. But because you don’t want to be seen as a neurotic parent, you just let it pass.

Three months have gone by and wee Dennis is strangely tired all the time. He didn’t used to be like this, so you make another appointment: you get Dr Williams who notes your story and suggests a change of routine. Off you go again.

Six months after that first appointment with Dr Osborne, you notice that wee Dennis is walking funny and appears to have what looks like, to you, swollen joints. You phone up, you get an appointment and you get Dr Brown. Dr Brown’s on the mark: be like Dr Brown. He looks back through the list of your previous visits with Dennis and he’s concerned. He suggests a blood test.

I know this is just a made-up story but pick combinations of symptoms from the following list:

  • Easy bruising
  • Fever
  • Headache
  • Joint pain
  • Walking pain
  • Weight loss
  • Fatigue
  • Vision problems
  • Night sweats
  • Pale skin
  • Shortness of breath
  • Enlarged lymph nodes
  • Swelling in the abdomen

Recognising that your child has had a combination of several different symptoms over a shortish period of time is a cause for concern. In my story, Dr Brown was alert to the situation.

But…

Every child is different, and it may well be that a child presents hardly any symptoms at all until stage 4, when neuroblastoma is high risk.

But the message remains the same: the earlier that anything is diagnosed, the better are the chances of sorting it. If Dr Brown’s blood test came back positive, then awareness may have allowed a diagnosis at stage 2.

And so to the bike: we came back from holiday late on Tuesday afternoon, arriving home after a 250 mile drive in 28C of heat with no air con. It’s the way we roll: running a twelve year old motor in order to fund the LCFN bike(s). The last two weeks have yielded a grand total of 64 miles, and as any athlete will tell you, you lose it quickly once you stop (especially when you’ve been on the ale on holiday). So Tuesday at 7pm was a rude awakening. For a start I’m hardly ever out that late in the day, and that brings pressure: pressure to get home again in daylight. Rolling in at half nine is kinda strange, but it set the tempo.

Wednesday morning I was sore from the off, and my gammy thigh muscle seized up the moment I rolled out of bed: not a good sign. But hey, sod the pain, sod the toxic legs, let’s be having another 30 miles. I mentioned last week that 32,000 miles was coming up this weekend but this being LCFN, I wanted it a day early. I wanted it today. I love challenging my body and I love smashing the things that I’m not supposed to do. So now that’s four 30 milers on the bounce and apart from the now customary nagging pain in the front of my right leg, everything’s back to normal. Leaving aside #ForeverFive week before we went away, when basically my motivation was all over the place, over 90% of the last 100 days out have been 30 milers.

And this week has been fuelled by the memory of wee Eileidh. You get nothing in this life without giving yourself a chance. From a standing start on Tuesday evening, I’m now looking down the barrel of a wholly unexpected 200 mile week. Just 70 miles required from the weekend. Wet and windy? Watch me: I like a bit of rough.

But I can’t leave left this week without going back into the world of SNOMED because it dictates my life just now. The laptop went on holiday because I had an assignment due, and last night I sat down to do the online exam for Module C: Design of Terminology Services. It’s medical stuff and I’m a software guy. It’s hard going. I need to get through all six modules in order to guide my team through the upgrade from the old style of NHS IT to the brave new world of SNOMED. Every module builds on the last, every module is longer than the last, and every module must be passed with at least 70% or you’re off the course. Nothing like pressure then…

Last night’s exam was four hours. Twenty questions and a clock ticking down in the corner of the screen. The answers are all multi choice and you are usually asked to select one or more answers from a list of five. Quite often, an answer will have a selection of words to be chosen from a list to make up a correct sentence. Every time you make a correct selection, you score marks. But every time you select a wrong answer, you lose marks. And if you fail to select a right answer, you get penalised for that too. It’s an open book exam so the trick is have all your research laid out in front of you before you start.

At the end of those four hours (well, three and a bit actually), I just clicked on save and submit and hoped for the best: I had indeed done enough to make it into the next round. It starts imminently: it would have been today but I had real work to do. And a two and a half hour bike ride.

June tried to break me.

July tried too.

But I have a spirit…

And she got me through…

LCFN is Eileidh’s legacy.

Relight My Fire

Four weeks of hell came to an end on Monday. Two weddings and two funerals culminated in Eileidh’s spirit relighting my fire. Before I left the house for the 350 mile round trip to Aberdeen, Jane reminded me that children’s funerals are the worst. With the state I was in, that was the last thing I needed to hear. But I worried for nothing…

Eileidh’s funeral reflected her life. Sure there were floods of tears when a group of primary school pall bearers carried her wee pink coffin into the chapel, it having arrived at the crematorium in a horse drawn carriage, but from that moment on, the day was a celebration of a short life lived smiles better. The city of Glasgow may have created the brand, but Puddles made it her own: Eileidh Smiles Better.

The service was a celebration of her life, with stories being recounted from family and friends, about how a strong willed wee rascal defied everyone, and her disease, with a smile on her face. And Cerys delivered a beautiful poem about her best friend, word perfect. In that moment, Cerys showed maturity way beyond her years. No child should ever have to go through what she has endured these last few years, but Cerys will emerge a stronger, more empathetic young woman through having loved her wee sister.

The service finished with three minutes that brought home with sledgehammer effect that LCFN has made a difference. At our mam’s funeral just two weeks ago to the day, the final act was the singing of The Lord’s My Shepherd. At Eileidh’s funeral, the final hymn, if I dare use that term, was Puddles, played out to the backdrop of the video of her fight on two big screens. I was sat with Claire from Solving Kids Cancer, who I’d previously met at the SKC fun day in Richmond two years ago. We got each other through those three minutes holding hands: but the tears still flowed. Amelie, who wrote and recorded the song in Adelaide just fifteen months ago, got a late pass and stayed up specially on the other side of the world. The photo she sent over of her wee pink party dress lit up in candlelight in memory of the Princess was itself was a touching moment, an LCFN will never forget Eileidh kind of a moment.

I’d set off for Aberdeen with two outfits. I’ve only ever been to funerals in traditional black, but I knew that Gail was planning a Princesses and Superheroes after party as a celebration of Eileidh’s love of fun. When I got there, and followed a giant pink dumper truck into the crematorium, I knew I was overdressed. My other outfit was LCFN, the brightest I’ve got: not a lot of pink on show right enough, but 25 year old branded lycra nonetheless. I bought that shirt in 1992. I did a quick change in the back seat of the motor in the far corner of the car park.

The party lifted my depression and I didn’t expect it. I met friends, old and new, some who read this stuff week in and week out, and some who didn’t even know it existed. But perhaps my most treasured memory was when one of the beautiful Love Rara princesses told me that she reads the LCFN blog every week. Just like when Puddles was played in the service, it was a moment when I thought “maybe this stuff makes a difference after all”. Thank you.

While I was sat downing the coffees to make sure I was wide awake enough to drive home, I explained to Claire that from this point forward, LCFN fundraising is going to take a new direction. I’ve come to realise, painfully, that the only way to prevent more days like Monday is to invest in more research. Funding bucket lists and wishes is nice but it’s only papering over the cracks of more children being diagnosed and ultimately passing away. That has to stop. As I’m writing this 201st chapter of the story, 1700 miles from home in southern Italy, I caught a news feed of Bradley Lowery’s funeral on social media. It set me off again. These days have to stop, and only research is going to do it. We have to stop being reactive and start being proactive. If you haven’t already seen it, please watch this:

https://www.youtube.com/watch?v=8hD9x2xZKio#action=share

As a thank you to LCFN’s followers in Australia, and especially to Amelie (and Ben) for their ongoing love of Eileidh, I’m going to start fundraising for Neuroblastoma Australia. I’m not going to abandon Solving Kids Cancer, but I am planning to offer support to the research that’s taking place down under: ultimately, that will help children worldwide through the breakthroughs that are being made.

Driving home on Monday night, it was like a great weight had been lifted from my shoulders. Seven days earlier, on Jane and I’s return from London, miles were furthest from my mind. That’s where #ForeverFive was born and it’s a spiritual place that I know I can return to if ever the need arises. #ForeverFive is a sanctuary where recovery miles exist: where there’s no pressure to break your body. In truth the last two weeks have been utterly slothful. But fortunately Gail’s got some ideas up her sleeve to support the memory of our wee Princess and I have more than an inkling that I’m gonna roped in. Show me where to sign. I’m happy to be used as a cash cow in the time that’s left.

No sooner was I back from Aberdeen than our whole family headed 250 miles south to catch a big bird into the sky: this week has been the final piece in the jigsaw of my renaissance: ridiculous heat, beer, wine, sightseeing and zero miles. There’s no way I’m coming home free of the thigh injury that’s plagued me for eleven months now, but at least it’s had a wee rest. Next week kickstarts the next phase of the adventure, starting with 32,000 miles: that’s only days away: pencil it in for next weekend.

I’m also planning some new kit. Four years into the journey, I’m gonna promote LCFN through the look: a yellow bike with yellow tyres and yellow handle bar tape. And a new yellow helmet. I’d like it by September for Go Gold month but that may be a bit of a long shot: nothing’s been ordered yet. The new bike’s also going to have hub gears instead of derailleurs because the dirt wrecks them on the shit country roads of Ayrshire. This will probably be the final bike: the sixth of the series. But with a bit of luck it’ll do me for two more years and by then LCFN will be looking down the barrel at 50,000 miles. It’s starting to look like 25K was just the warmup act…

The next few weeks will be fragile: I know that. But I’ve got the four year anniversary coming up on the 19th August and it would be nice to try and get close to 33K miles by then. That’s the springboard for next year: Australia beckons in 2018 and despite my thinking that it would be nice to ride into Adelaide for 40K, I suspect that landmark will fall long before then.

If you’ve read the last couple of blogs, you’ll also know that I’ve been trying to play catch up/keep up with the SNOMED course that I started at the turn of the year. I bought the laptop on holiday because I’ve got an assignment due, and an exam coming up at the end of next week. The pace of that is as relentless as LCFN has been these last three years. But the homework’s done, it’s in and I’ve scored enough marks to keep the wolf from the door. I’m not a doctor and I’m not expecting to ever know enough of this stuff to make a diagnosis: that’s not my job. I’m a data man and my objective is create software that will allow my people to make those same diagnoses. Horses for courses.

But back to the future…

Two weddings and two funerals may have taken their toll. But Eileidh inevitably has had the last word…

Relight my fire: Take That!

 

 

#ForeverFive

I’ve maybe come across in the past as somewhat indestructible. Unfortunately that’s not the case. This is basically a story about getting knocked for six and trying to deal with it.

There are quite a few key ingredients that combine and interrelate to make this an especially difficult time:

  • Our mam passing away just four weeks ago
  • Eileidh passing away (suddenly) last weekend
  • The high pressure SNOMED-CT course that I’m currently doing demanding intense levels of study
  • Software that I’ve written going out on field trial (for evaluation) next week
  • Going on holiday shortly

On their own, I could probably manage to deal with each. Thrown in together, I just feel like I’m drowning in the Sea Of Good Cope.

Because I’ve lived three hundred miles away from our mam for over forty years, I’ve been used to not seeing her for months at a time and in that respect her passing has not greatly affected my day to day life. But knowing that the end was coming, rushing down the road against the clock and being there for those last few hours left an indelible mark. At a stroke, forty years of three hundred miles melted into insignificance. In the week that followed, while I was sorting out all the funeral arrangements and stuff, the bike was my escape: maybe, just maybe, that was because I was down the road, exploring new routes and generally trying to keep myself busy. But even so, my nerves were frayed, and I knew it.

That week down south was interspersed with SNOMED study. The advanced implementation course waits for no one and the modules come thick and fast, so do the assignments and the assessments. If you fail a module, you get thrown off the course. It’s a brutal regime and I only just crept over the line in the second module of six because my head was all over the place and I didn’t have the time or the motivation to apply myself properly. I need to pass these modules because the research and development work I’m engaged on in the day job has a drop dead date that cannot move: and therein lies the pressure.

Three days after I got back up the road from England, I made the 350 mile round trip to Aberdeen for Eileidh and Harrison’s wedding. I loved the day (to bits) but the drive was demanding. Less than a week after that we were back down the road for our mam’s funeral. I think until the funeral’s out of the way, you’re still in an unstable emotional state and the slightest thing can set you off. With that as a backdrop, I was trying to juggle work, study and cycling and really only delivering on the latter: the miles remained good because I was focussed on Eileidh and her fight for life. My nails, that I had done in gold and pink back in March, were starting to look a bit tiresome but hey, Puddles herself was having her good days and bad days so that was never a problem: we were in this thing together: the nails were my vigil and I wasn’t changing that for anyone or anything. It was never about the look, just the reason why I had them done.

So back to the SNOMED course for a moment. At the outset, the directive was to get piled into modules A and B as soon as possible because the learning curve goes vertical from module C onwards. I started module C ten days ago. By vertical, I mean that the student is required to understand and act upon stuff like this: “Description Logic cannot infer whether a primitive concept subsumes another primitive concept unless there is an IS A relationship between the potential subtype concept and the primitive concept”. Here’s another example: “Negative context values require the logical direction of subsumption to be reversed”. You simply can’t get wired into this stuff and hope to understand what’s going on without having your brain on a turbo setting. For moi, the timing could not have been worse.

Last weekend, Jane and I were booked on a surprise weekend (for her) in London. She was going to see Adele at Wembley, the final gig on the 123 date world tour, except she didn’t know. How I managed to keep it a secret for six months I don’t know, I made it through to Saturday morning however, and when I woke at 4:30am (insomnia rules okay) I checked the time (cos we’d to be up at six) and had a quick swatch at my phone: there it was on the news: concert cancelled. So then I had to tell Jane why we were going in case she wanted to cancel: not a chance. We went, spent eighteen hours travelling out of the next sixty but we did at least have a good time in between.

On the final approach into London, probably somewhere around Milton Keynes, I got a message from a friend informing me that Eileidh had passed away. The train was full and I was just getting to the bottom of my second Stella. Maybe I would have gone on to down a third but the news downed me instead. On a packed train, I had tears streaming down my face, could barely speak and was thrust back into that dark place that I’d been in only three weeks before. But this time it was worse because no way was I recovered from the loss of our mam.

I’ll be honest right now and say that the Puddles Of Tears blog that went out 24 hours later on Sunday morning wasn’t written after the event. Gail had phoned me late on Friday night so I knew the end was near: but that doesn’t make it any easier when it happens. My issue was that my eldest lad Ross gets married tomorrow and I knew that once I got back up the road, I would have precious little time to get my head round the blog while I was already at loggerheads with SNOMED and the wedding prep. So I wrote my appreciation of Eileidh, and how she changed my life, on the way down the road on the train. If you believe in the way these things happen, I put the laptop away about half an hour before Eileidh gained her angel wings. Ever since our paths first crossed, there have been spooky coincidences: I started LCFN because of Oscar, then Eileidh was diagnosed the day after Oscar passed away. Eileidh was the focus of the LCFN 20,000 mile celebration, and ironically I’ve cycled 20,000 miles since we first met (LCFN was at 11,000 back then). Then when our tribe flew out to America in July 2015, Gail and her family were on the same plane 24 hours later. Ditto the return. The coincidences just kept on coming.

There are no two ways about it, Eileidh’s passing has knocked the stuffing out of me. She was the reason I carried on past 25,000 miles. I’ve been fundraising for her for the best part of two and a half years, and through the efforts of people in and around LCFN, together we’ve probably managed to lob six or seven grand into her pot. Eileidh became LCFN and LCFN became synonymous with her journey. We just soldiered on with smiles on our faces (actually mine has always been more of a grimace because climbing has never been fun).

But on Monday, I couldn’t face going out. It was like the bottom had dropped out of my world. Carrying on was no longer about the wee person who had inspired the journey for so long. What was I to do? I basically found myself at a crossroads. I have pushed so hard for so long, I suddenly found that I couldn’t push a single day longer. So when I got home from London on Monday, I decided to mothball LCFN as it has been for the last four years, for something that I can manage for the immediate future.

Eileidh was five. She will always be five. Late on Monday afternoon, I spent half an hour trawling Google Maps looking for a route that would give me five miles: but more than that, I wanted it to spell out the number 5 on the road. I found such a route. Like the whole Eileidh and Puddles thing itself, this was clearly meant to happen. The distance on the road from one end of the 5 to the other turned out to be precisely half a mile: turn round and trace the route back and it’s exactly one mile back to the start. Five laps is five miles. And now that route is a named segment on Strava. It’s there for the whole wide world to see and cycle. It’s my final defining present to the girl who changed my life.

It’s called #ForeverFive

Puddles Of Tears

She changed my life: and she did it with nothing more than a smile, the most potent weapon a wee Princess can possess.

And I’m not alone. Since May 2014, wee Eileidh has captivated people all over the world with that smile, and her ability to deploy it in trying to kick neuroblastoma’s ass. But cancer is a beast, and just when we thought that our warrior had it beat, so it sneaked right back up on her and took her away from us.

She may have gained her angel wings, but Eileidh Rose Paterson lives on in the hearts of many.

My Eileidh Journey started back in December 2014, and I’ve got Mouldy to thank for making it so. The big man was booked onto Cycling Santas for the whole gig from London to Belfast. Me? I was just a lightweight and only doing the last two legs from Edinburgh to Glasgow followed by the whizz round Belfast. That Sunday that we cycled from the Sick Kids’ Hospital in Edinburgh to Yorkhill in Glasgow, the weather was grim: freezing cold, intermittent sleet showers and straight into the wind: everything that makes for a grim adventure. But at the end of that journey, we headed for a boozer on Byres Road in the west end of Glasgow, the Curler’s Rest. That’s where I first set eyes on her…

Eileidh had just been discharged from Yorkhill after a gruelling round of treatment, aged just two, and was ready to head back up the road to Forres. But Gail and the family came for a bite to eat with the cyclists before they set off on their long journey that harsh winter’s night. When she wasn’t sat glued to her iPad, she was pinching chips from everyone’s plates. That was my first memory.

Then we roll the story forward a couple of months and Solving Kids Cancer (I think they were still the NCCA back then) ran a story about a family who were fundraising to get to America for specialist treatment. It was for Eileidh, and that’s when LCFN kind of went into overdrive. That was my game changer, that was my wee Oscar moment, as I’m aware my friends from the Celtic fraternity had been two years before. And it was to them I turned in that hour of need, or in particular, I turned to Mouldy.

Mouldy is the man. Mouldy is always the man. I was already booked to do Highland Bike 2 from Inverness to Celtic Park, following on from HB1 twelve months earlier. The Highland Bike had grown out of the Highland March as a bike ride from Caley Thistle’s penultimate game to the last game of the season. It was on the Friday of the 190 mile ride from Motherwell to Inverness in 2014 that Eileidh was diagnosed so it made natural sense (to me) to ride the other way for Eileidh. The penultimate game was in Inverness this time around whilst the final game was at Celtic Park. It was meant to be. Knowing how Mouldy had been a key player on the Team Oscar bike ride to Belfast, I asked him if he’s help me to do some fundraising. The rest, as they say, is history…

But before I tell the rest of that story, let me turn the clock back a few months because social media has always been, and will always be a big part of the LCFN adventure on Eileidh’s Journey. Let’s take it right back to Jimmy Harrington. Jimmy walked round the coast of Australia to raise money (and awareness) for Brainchild, the brain cancer charity in Straya. One of Jimmy’s friends and followers was Tara, in Adelaide. Tara kindly agreed to look after the LCFN flag for a few months when Angela (Stewarton’s own l’Anja) went over to visit her son. Had Angela not made that trip, or Jimmy not walked round Oz, none of what followed would have happened.

Tara had a mate JJ, who had a Sunday night radio show (Sunday morning UK time). We were regular tuners cos he played cool British oldies from the 60’s, 70’s and 80’s. And JJ kept plugging LCFN on air. But more than that, JJ was in the habit of periodically having guest DJ’s on his gig, showcasing their stuff. One such girl was Missy Fay. Missy, your role in this tale is the stuff of legend. For a start, I loved your music: so we became friends. Then I loved your politics and your humanity: you were my favourite Facebook poster of 2015. Nothing will ever diminish what you did for Eileidh, in a completely innocent and unknowing way…

I remember it well. It was a Sunday morning and I was sat propped up in bed with a cup of coffee, messing about on my phone. Then Missy posted this song by a band called Frank Loved Joan. Little Feet was the track. How prophetic. How does that stuff even happen? I so loved that song (still do) and watched the video about half a dozen times straight off. Then I had an idea. I’m a cheeky sod at the best of times, working on the principle that people can always say no. But sometimes they say yes…

So I set about finding Frank Loves Joan to see if they would do a wee song for Eileidh to mark the upcoming anniversary of her diagnosis. Within minutes, I’d discovered that Frank Loves Joan is the stage name of (soon to be our own) Amelie Bottrill and we made the connection. There then ensued a getting to know you exchange of instant messages back and forth across the cloud as we explored what we might do for our Princess. Amelie was smitten. To put this in some kind of perspective, we were half a world apart, always half a day apart, but we just kept at it. Ideas here, tags for the song there. Eileidh’s likes here, Amelie’s interpretation there. And all the time, Amelie was refining her masterpiece. On May 7th 2016, I got an unplugged version of Puddles which I still adore, recorded at 3am in her living room. Two days later, the master copy arrived, studio mixed by the genius of Ben Abercrombie. The rest of that story is history too. Puddles sits with 33,000 views on Facebook and remains for me, the defining tribute to her battle against this dreadful disease.

About six weeks ago, when the announcement was made of Eileidh’s Best Friend Forever wedding to Harrison, Nic Naish, another of LCFN’s stalwart followers, suggested to me that we should fly Amelie over for the wedding. In the event, it didn’t come off but instead, Amelie and Ben came up with another epic masterpiece. If Puddles is the symbol of the fight, then Take My Hand will always be the anthem of the personal love between a mother and her precious daughter. I’ve probably watched that video twenty or thirty times now and it still sends a shiver down my spine. Every time.

https://www.dropbox.com/s/i9vvuzbvuwtptaz/take%20my%20hand.mp4?dl=0

Eileidh was diagnosed the day after wee Oscar passed away. Eileidh herself gained her angel wings one year to the day that LCFN achieved its original target of 25,000 miles. I carried on because of her: the journey continues…

But back to that bike ride to Celtic Park…

Eileidh had been in hospital in Aberdeen all week and only got home on the Friday night. Mouldy and Rob, veterans of Team Oscar, had joined forced with Kev, my old running mate fae Cumbernauld, and myself to do the ride from Inverness then Forres Mechanics, the Highland League side, offered to open up their ground and get a few players along on the Saturday morning so we could start the 200 miles journey from her own back yard, whilst maintaining the football connection. Eileidh was there. She was also there pitchside at Inverness, serenading the crowd three hours later, and clutching her own bucket for her collection: totally in her element.

But her place in folklore was cemented on the Celtic Way in the east end of Glasgow two days later. A small entourage had gathered at Celtic Park to welcome the cyclists and as the riders legged it from The Forge on the final approach, a brief but brutal hailstorm pierced the summer air: a Scottish summer of three seasons in ten minutes.

Come the photo call, the hailstones had turned to puddles, and someone had a better idea than standing in line for the piccies. A legend was born: Princess Puddles.

I want to remember Eileidh for all the good times: the getting up at 5:30am on a Sunday morning to drive to Glasgow Airport to surprise Gail and the family on their return from the United States. The day that Mouldy, Laura and I got to spend with the family at the Indoor Floral Garden at Inverness in 2015 to mark 20,000 LCFN miles. But most of all, I want to remember Eileidh at her Best Friend Forever wedding to Harrision. For one day in their young lives, two little people got to do something that fate would ultimately deny them later in life.

Eileidh’s passing has precipitated an outpouring of grief on a global scale…

Puddles of tears.