LifeCycle For Neuroblastoma

LifeCycleForNeuroblastoma Brand

Welcome to LifeCycleForNeuroblastoma, the home of the LifeCycle challenge in aid of Solving Kids Cancer.

I’m Steve Taylor, aka Von Schiehallion, the LifeCycle man.

Solving Kids Cancer helps families affected by the childhood cancer, neuroblastoma. In most cases neuroblastoma is only diagnosed when it has already progressed to a late ‘high risk’ stage.  Even when children are tested clear of neuroblastoma after initial hospital treatment, a high percentage of children with high risk neuroblastoma will relapse and some children will not respond to therapy.

LifeCycle is an extraordinarily difficult challenge meeting an extraordinarily difficult disease head on.

Here’s the deal: The circumference of the earth at the equator is 24,902 miles. The LifeCycle target was 25,000 miles of commuting to and from work in 4 years. That’s the same as cycling from London to Manchester every week: but there’s also a thousand feet of climbing in each direction. That’s equivalent to climbing Ben Nevis twice a week on a bike. The route passes by Europe’s biggest onshore windfarm at Whitelee. There’s a windfarm on the Eaglesham Moor for a very good reason… And as if all that wasn’t enough, I was 60 when I started, and just over four years from retirement. The only way to complete this challenge was to never give up. I didn’t: I completed it in six weeks short of three years, then just kept going. Think “Forest Gump on two wheels“.

This is LifeCycleForNeuroblastoma.

The full ongoing story is here in the blog. You can become a supporter and get involved, at either

http://uk.virginmoneygiving.com/LifeCycleForNeuroblastoma

or

http://www.justgiving.com/SteveTaylor-60

If you’re on Facebook, then please have a look at the LifeCycleForNeuroblastoma group. It’s full of the latest news, photos and various bits and pieces from the LifeCycle Twitter feed.

Here are the LifeCycle miles

And here’s the story so far…

SEPTEMBER 2016

The Hardest Words

Living Puddlian

Beautiful, Beautiful Eileidh

113 and a miss

Goldfinger

AUGUST 2016

Frazzled

Aussie, Aussie, Aussie

On The Road Again

Out And About In Puddleshire

JULY 2016

I’m Gonna Be (500 Miles)

The Oven Bucket Challenge

Timeout

JUNE 2016

About A Girl

My Way

Reflections

Freewheelin’

To Puddles With Love

MAY 2016

Around The World In (500 and) 80 Days

24 Carat Gold Cake

Oscar 2 Eileidh

APRIL 2016

Relentless

The Fightback

To Infinity And Beyond

The Land Of Make BELIEVE

The Times They Are A Changin’

MARCH 2016

When I’m Back On My Feet Again

Slange Var!

The 39 Steps

FEBRUARY 2016

1999

No Pain, No Gain

Buy One, Get One Free

Black Ice Ops

Hoo Ha Henry

JANUARY 2016

Gertrude, Sister Of Bawbag

Shirley Knott

Ice Station Yompa

Wee Kian Do It

DECEMBER 2015

The LCFN Awards 2015

The Very Best Of 2015

Christmas (Baby Please Come Home)

The Wheels On The Bus

It Never Rains But It Pours

NOVEMBER 2015

Something Inside, So Strong

When The Going Gets Tough…

The Princess And The Magic Garden

When You’re Going Through Hell, Just Keep Going…

OCTOBER 2015

LCFN Goes Platinum In October For Children With Neuroblastoma

The Hundred Days Of Hell

A Question Of Semantics

Because I Can

When September Ends

SEPTEMBER 2015

New Gold Dream

The Sky’s The Limit

Never Give Up

Going For Gold

AUGUST 2015

Awareness, Awareness, Awareness

Planting Seeds In Fallow Ground

Bad Things Come In Threes

Our Father

One Day At A Time

JULY 2015

Here We Go, Ten In A Row

I’m On A Train / London Calling

Double Puddles

Puddlemania Hits The States

The Good, The Bad And The Ugly

Kids In America

JUNE 2015

Fire Tiger

I Still Haven’t Found What I’m Looking For

Super In Love

Puddlemania

MAY 2015

How A Walk Became A Cancer Crusade

The Anniversary Waltz

Forres Gump

I’d Ride A Million Miles For One Of Your Smiles

Take It To The Limit

APRIL 2015

C’mon Eileidh

Ecstasy, Passion And Pain

Monday The 13th

The Spirit Of Walfrid

It’s All Downhill From Here

MARCH 2015

Halfway To Paradise

Sugar Sugar

Boom And Bust

Gimme Closure

FEBRUARY 2015

Patience Is A Virtue

Cause Or Just Impingement

Off The Cuff

A Retirement Home

JANUARY 2015

King Commute

Just Another Day

The English Patient

Rainspotting

On The Road Again

DECEMBER 2014

2014’s Greatest Hits

12,000 Miles – A Christmas Song

Riders On The Storm

Sometimes, Words Are Not Enough

Santa Claus Is Coming To Town

NOVEMBER 2014

Live Every Day Like It’s Your Last

Everything In Perspective

Back From The Grail

The Holy Grail

OCTOBER 2014

You’ll Never Walk Alone

Whole Lotta Love

I Don’t Like Mondays (Except This One)

The Bucking Bronco

Frauday Morning

SEPTEMBER 2014

Give ‘Em Both Barrels

Back To The Future

My Body Is Revolting

Ma Wee Sair Knee

AUGUST 2014

Rest If You Must But…

The Third Man

The Bike Hospital

King Of The Mountains

The Carnival Is Over

JULY 2014

End Of Term Report

The Three Seasons

Advance To Glasgow – 200 Days Since Passing Go

The Lesser Spotted Pot-Bellied Lycra Man

JUNE 2014

And I Would Bike 500 More…

Getting Yer Angles Right

Playing Injury Time…The Wizard Of Oz

MAY 2014

Mega May

Vastus Medialis – Injurus Crampus

One Undred An Eighty…. Two

Keep Right On To The End Of The Road

It Might As Well Rain Until September

APRIL 2014

The Long And Winding Road

Magical Mystery Tour

A Case Of Pineau De Re

Permalactic Legs

MARCH 2014

Wanted – A Magician

Bonus Track – Hey Paula

The Loneliness Of The Long Distance Chugger/Gone With The Wind

Under Pressure

Fuel For Sport

FEBRUARY 2014

The Ten Commandments Of LifeCycle

Ultrasound and Intervals

Hail Hail, the Spring Is Here!

A Lighter Shade Of Pale

JANUARY 2014

No Regrets

They Think It’s All Over – It Will Be In July 2017

The Impossible Dream

LifeCycling – The Movement

Into The Groove

DECEMBER 2013

Groundhog Day

The Battle Of Wounded Knee

That Darned Competitive Dawg

Paul McConville

NOVEMBER 2013

Fuel For Thought

Bonus Miles

Kick Off

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.

Living Puddlian

It’s not uncommon to arrive at Friday without a theme or an idea in my head. If nothing has seeded itself by Thursday, I’m usually scrambling around trying to concoct something that will work. Today, I needn’t have worried. It landed in my lap: almost literally…

It’s been a bit of an Amelie week. When I got back from Liverpool last week, there was a very large parcel waiting for me. It was from Australia. It was from Adelaide. It was from Amelie. Actually it was from Frank Loves Joan, which is Amelie.

Not one CD but two. And a nice note.

When I was a kid, I always remember being wary of liking a song too soon. The same goes for an album. Liking it on day one was always a sign that you’d be sick of it soon enough. So it was good that while I was working away on Friday, alternating between the two CD’s, I never quite ‘got it’, yet at the same time a couple of songs jumped out at me.

If you like your music artistic and quirky, then FLJ is for you. If you loved Sinead O’Connor and want to hear her voice updated in 2016, then FLJ is for you. If you want to hear a bit of Edith Piaf and some solo multi instrumental stuff, then FLJ is for you.

Have I sold it to you yet?

Amelie is a focal point of LCFN and all that it has come to stand for. She’s admin at the Aussie end of the operation, and a little bit of me knows that Eileidh Paterson has changed her life. Forever.

The Puddles track on FLJ’s second album has had over 22,000 hits on Facebook. But here’s a thing right: almost 28,000 people have seen the post that carries the video, yet 5,000 haven’t clicked the link. I don’t get that. I just don’t get it. It’s not like you’re being put off by the heartbreaking content because you haven’t watched it yet. How does that happen?

So… it’s almost midnight in the UK and in a few minutes time, Amelie and her magic, super talented record producer Ben Abercrombie will be live on Radio Adelaide ahead of FLJ’s official album release on Saturday. Puddles is track 3 on the new album About A Girl. The girl is Eileidh. This is serious stuff. Please understand that wee Eileidh is featuring on a CD written and recorded 10,000 miles away by a singer/songwriter none of us had ever heard of at the turn of the year. I owe Missy Fay one massive, massive favour for it was she who shared FLJ on Facebook and the rest is history.

If there is one thing that I could wizard to make Eileidh’s wee life complete, even at this young age, it would be for us all to crowdfund an airline ticket for Amelie to jump on a plane from Adelaide to Aberdeen to walk into her hospital ward. With her guitar. With her violin. And a borrowed keyboard. The serenade to end all serenades. Who knows Richard Branson (he rides a bike!) or Mr Quantas? It would be utterly surreal. Really.

Anyway, ahead of the radio gig, to matters of the bike, or should I say bikes…

Big Steve Abraham is still racking up enormous miles in pursuit of the world record for the most miles cycled in 30 consecutive days: he’s been averaging close on 220 miles for each of the last 20 days and is still on course to break the record. But as it was with LCFN and the 25K target, it’s never over till it’s over. Stevie boy, we’re all with you, willing you on. Those aren’t just Guinness Book of Record Miles: they’re Million Mile Challenge miles.

Now I know I drive you all mad with my stuff about awareness, but in this, September, it’s more important than ever that people get the message. This is our banner opportunity. And by the way, my golden nails are still in mint condition 23 days later. Big shout out to Hannah fae Stewarton who did them for me. Same gig next year hen!

But get this: I started the Million Mile Challenge on Strava when I hit 25K because I couldn’t just stop. At first it was just me and Stevie McLuskey. That’s the way it stayed for a good few weeks. Then Mouldy came onboard and he brought a few of his Road To Lisbon guys to the table.

Now we’re 43 riders, and the team spans the UK, Canada, Mexico, Italy, Turkey, Romania, Ukraine and Australia. Every one of those riders has learned something about neuroblastoma. What’s neuroblastoma they ask? Cancer of the nervous system in young children comes the response. The group is growing organically by word of mouth and personal contact through social media. There’s been no advertising. People are with us because they want to be. I used to think that the 25K challenge was the best thing I’d ever done but this has the potential to top that. It’s never about what you’re going to do, it’s about what you have done and what you are doing. LCFN isn’t everyone’s cup of tea but hey, there are plenty more fish in the sea.

Do you remember when Mouldy, Kev, Robert et moi cycled from Forres Mechanics FC to Celtic Park last year? Well on that first day, big Callum Finlayson was our guide on the road out of Forres. Callum kept us safe in those early miles. The big man admins the Pedal Strokes charity which helps people affected by stroke and sarcoidosis. Callum himself came back from a stroke to win the Scottish 100 mile time trial championship in 2014. That is a measure of the man.

Well this week, the Big Man has taken on the North Coast 500 mile challenge. As the name suggests, it’s 500 miles, and as folklore confirms, it’s as hilly as feck. Well, for the benefit of the rest of us mortals, Callum has been doing a series of on the road the videos and they confirm that this is a challenge for the bonkers: thousands upon thousands of feet of incessant climbing, and that’s before you factor in the wind. And hell, it doesn’t half blow up there.

To quote the man himself “I’m burst”. Knees wrecked. Left leg wrecked. Arse wrecked (am I allowed to say that?).

Spirit not wrecked.

Spirit intact.

Spirit of a champion.

Champion.

Note to self: once I’ve retired (?), get a 28 sprocket on the back and spend a week on that road. Do it before it’s too late.

Inspired by Eileidh and inspired by Callum’s exploits, I kind of got sucked into a bigger effort masel’ this week. It’s been hellish windy but that just means yer gotta use it to your advantage. Hedgerows are good cos you can hide underneath them on the drop bars: then deploy the mainsail for the trip back home. Use the head. Always plan with the head.

I can’t remember how many 200 mile weeks there have been: it’s been so long since I did one. It’s in the high 60’s somewhere. So a solid 25 on Monday was just that: solid. 26 on Tuesday kept it going. 25 yesterday set the scene for the ton, but in reality all it did was kept the two ton on the back burner. So to today: a lovely day. My work brain really wasn’t on the case today and I won’t bullshit anyone, anytime to I clocked off at lunchtime and headed out on the road. 35 brought up 111 for four days and now the scene is set. It’s down to how much I want it. Simple.

No one else does my miles. No one else can. It’s like no one else can fight Eileidh’s fight. Only Eileidh can. It’s down to you. You…

I’m not going to promise you a 200 mile week. I’m just saying that I’ve given myself the chance. Never, ever underestimate the stress that a 200 mile week puts on yer body. And mine’s an old one. Also, the weather forecast for Saturday is shit so that should make things interesting…

I want to end this week where I spend most of it: wondering how Eileidh is doing. She’s been undergoing round after round of chemo of late, which would be enough to floor an adult, but this is Puddles we’re talking about: Eileidh of the permasmile. As I commented on Facebook today, this young lady is remarkable. She has touched people across the world, and I’m sure I’m not alone in waiting in with baited breath for what will come next. This is not Corrie. Neuroblastoma is not some six week outpatient gig that the ITV soap would have you believe. That’s not reality TV for a reason: it’s not reality. Eileidh’s life is. She’s been living it now for the past 30 months: and she’s still only four.

I am proud to say that Eileidh has captured my heart.

I’m a living Puddlian.

 

Beautiful, Beautiful Eileidh

“Another Thursday night and I ain’t got no miles in

Another trip where I just got paid

Now how I wish I got someone to talk to

I’m in a thoughtful way”

Adapted words from the great Sam Cooke, a guy so soulful that the King himself, Otis Redding, saw fit to cover some of his finest work and make it his own.

It’s been a week when I’ve been on the road from day one and I’ve done no miles on the bike. It promises to be the lowest weekly total in ages and to be honest I’ve been climbing the walls needing some serious exercise. Bring on tomorrow…

But in those words at the top of the show lies a theme: beautiful words penned by a great artist. And so it was that the idea for this week’s blog came from the other side of the world: Adelaide.

I’m sure that most people reading this will know the story by now: while Eileidh was still NED (No Evidence Of Disease), a friend five times removed (initially) through Social Media wrote a song about a kid battling cancer. Quite how you do that, and make it believable and sincere is beyond me but Amelie managed it. She captured the scene so brilliantly that nearly 22,000 people have liked the video on Facebook. 27,000 have seen it. Amelie is an artistic genius.

But it isn’t just Amelie. She carries with her an entourage of family of friends who are just clones and clonettes of her artistic trait. So collectively, their Facebook life reads like one big long partyfest of flower power, passion and love.

So I guess I shouldn’t have been surprised when I woke up to the following post early one morning this week: just remember as you’re reading this that Amelie and Eileidh have never actually met. This just came straight from the heart.

“Beautiful, beautiful Eileidh! Still inspiring me everyday. September is a special month for raising awareness about childhood cancer so please think of Eileidh and all the brave little ones that she represents, especially this month! Please share something, donate, or even just educate yourself so that you know the symptoms. Pop over to Eileidh’s page (managed by her amazing mummy, Gail) and see what Eileidh and her family have been doing lately – you could leave a message of support – Eileidhs Journey🙂 Whatever you do, please spare a thought for these phenomenal people. They are going through, and surviving, more than most of us can ever imagine, and they still manage the kinds of smiles that could bring sunshine to a windowless room”.

I mean, how can you top that? Gail’s family have been supported by some amazing people these past two years, and I mean that in the sense that people have given them something to cling on to, something to brighten what must be a very dark and overpoweringly anxious existence. Amelie is right in there with the folk who have broken down the door and offered something spiritual. And right there behind her are her groupies. I blame her grandparents for her selfless commitment to the cause, but that’s another story in another blog, somewhere way back down the line: Frank Loves Joan.

Eileidh herself continues to be the most incredible brave warrior. The stories lurch from a few hours at home to a few days in HDU (High Dependency Unit) with a bit of normal ward life sandwiched in between the two for good measure. We see frowns, we see tears, we see boredom and we see mischief. But above all we see an acceptance that this is the way it is and that nothing is going to deflect her away from being herself and our Princess. I know that in order to be a real Princess, you’ve to be born to a monarch. Sod that: Puddles is as much a Princess as any that we’ve had in royal life these past few years. Here’s why (pinched from the urban dictionary):

A Princess is a noble young lady who carries herself with poise and dignity. Hands up everyone who’s seen Eileidh in her Love Rara outfits and who reckons she fits the bill.

A Princess listens attentively: Gail told Eileidh that Steve rides a bike.

And when she speaks, a Princess chooses her words carefully: “Look there’s a man on a bike! That must be Steve”.

Though she knows she isn’t perfect, a Princess possesses a strong sense of duty that comes with being who she is. Eileidh certainly knows who she is, and has a strong acceptance of it.

A Princess thinks of others: well doesn’t she, especially her mum, Cerys, Callum and her wee furry cats. Yup, tick that box.

A Princess believes and trusts. Eileidh has to: she’s no choice. Her life depends on it.

I love this one…

She doesn’t have to be in the spotlight because she already knows she’s a Princess.

A Princess is extraordinarily beneficient. Gentle, generous, compassionate, patient, good-natured and forgiving are all words to describe a Princess. Might have to play your joker on bits of that one, eh Gail?

A Princess doesn’t compete with a Prince. Just the opposite. She builds him up, and when he sees that he’s a hero in her eyes, it’s no surprise that he’s willing to suffer for her. He will go through anything just to keep an admiring Princess by his side. Eileidh, may I be your virtual bike prince?

And saving the best for last…

A Princess is a Princess regardless of her attire or her circumstances.

So there you have it, right there: confirmed. Puddles is a Princess.

My goodness there have been some sad late night posts from Gail this last wee while. I’ve seen Jane sniffling while she’s been reading some of them. But for every rock bottom, there’s also been an upside, a joyous revival that reminds you just how fast and just how far kids can bounce back. Except in Eileidh’s case (and Kian, and Zakky and all of the other wee warriors), it takes more than a couple of spoonfuls of Calpol to do the trick. That’s what makes them special: that’s what makes them warriors.

Now, before I finish this week, I want to share something with you. A couple of weeks ago, I told the story of how I had designed a software programme that finds disease. It works by having a clinical specialist define the symptoms by what the health professionals know as read codes. Then you go searching for those codes in combinations before analysing the results.

We know, because essentially it’s why we’re here, that most childhood cancers are not diagnosed until stage 4, by which time the treatment options are more complex and certainly more aggressive. So if a child is going to develop cancer some way down the road, wouldn’t it be good if you could make that diagnosis at stage 3, or even stage 2.

What if you were able to search for the known symptoms in clusters as a matter of course in primary care?

Do we know the common symptoms? We do.

Do I have a piece of software that can group those symptoms together? I do.

Has anyone ever tried it? I don’t know. I certainly haven’t. Yet.

This is brand new.

But this is September. This is child cancer awareness month…

I’m now home from my jaunt in Liverpool (five minutes ago) and the postman has been. He’s delivered the most beautifully wrapped present from Amelie: two copies of her new CD “About a Girl”. We know who the girl is. She’s a Princess. It was the most gorgeous thing to come home to. I’m touched beyond words. And it’s all packaged in gold ribbon. Dare I even break the seal?

I suspect repeat play will be the order of the day for the remainder of the evening…

This LCFN story may yet finish very much as it started: fate sent me on this journey. It took away my job in engineering two years after I met a Princess: and in its place it gave me a new career in disease diagnostics. Eileidh’s Journey and LifeCycleForNeuroblastoma are more, much more than a couple of brand names for a special sort of pain. When you go through something as long and as demanding on yourself as we have, you emerge a different person on the other side.

She went in as a wee girl: but she came out the other side as a Princess…

Beautiful, beautiful Eileidh.

113 and a miss

Today, I was nearly snookered behind the yellow, or should I say under it. The weather was awful, some might even go so far as to say it was shit, and I set out, in driving rain, to knock off another twenty odd miles in support of Puddles. The way it works is that I try to make my two hours on the bike as challenging and interesting as I can in the time that I have available. They say that time is money, but in my game, time spent on the bike is also hugely productive in the creative sense.

I’ll come back to the yellow in a bit but first let me lift the lid on the Puddles connection.

I wear a wristband that ties LCFN to Eileidh’s Journey. So do a couple of hundred other people around the world. I know there’s one in Philadelphia because I’ve seen a photo of it on Facebook. There are also twenty or so in Straya: two are in Brisbane and the rest are in transit to Adelaide as you’re reading this. I so want my Aussie friends to have LCFN/EJ bands.

Eileidh has been most unwell these last couple of weeks, fluctuating between her normal bouncy persona and a much more subdued clone of her mischievous self. Gail writes such a fantastic and detailed account of the day’s trauma late into the evening that it’s become a regular fix in the lives of so many of her supporters. Sometimes I wonder if I actually need to share the story on LCFN because I suspect that most of my followers are on Eileidh’s Journey as well. These are really, really difficult days for the Princess of Puddledom.

So the way I look at it, I wear her band and it has both of our names on it: Eileidh’s Journey and LifeCycleForNeuroblastoma. Gail has told me on numerous occasions that Eileidh thinks that everyone on a bike is called Steve, which is really kinda cute: I guess we both get it, to use Leona Knox’s phrase. Eileidh gets people on bikes and I get how hard she’s fighting for her life right now.

So I push harder because she’s having to.

So I go up more hills because she’s climbing the walls.

So I go into the wind on the way out so I can hopefully recover on my way home.

So I never give up. Vanessa Riddle didn’t. Wee Oscar didn’t and Princess Puddles most certainly isn’t. That’s our mantra.

This is all relevant because the weather has turned. While our Aussie friends are basking in their spring, we are staring down the barrel of a Scottish winter. The wind is up already and has been blowing at 25mph off the coast for most of the week. And now the rain’s here as well. This is Scotland. This is LCFN.

But as I was trailblazing out into a fierce headwind today, the rain smashing down across my face, I found a positive vibe… “This ain’t the Fenwick Muir. I don’t have to ride the Fenwick Muir ever again in winter”. But you know I’m gonna, just for the hell of it and for old time’s sake. Probably at 5am too so I can get the full, surreal “did I really survive this for three years” feeling. If you’re reading this and you’re living in England, then I understand how you won’t quite grasp what this is about. The biggest onshore windfarm in Europe (before the Romanians built a bigger one) is five miles up the road. It powers Glasgow. Do you get my drift? The Fenwick Muir in winter is pure evil on a bike.

Anyway, where was I?

Ah yes, snookered behind the yellow…

I was flying back to Stewarton with the wind on the Irvine road, doing about 20mph (Strava confirms it), just past Perceton and over the top of the brow of a hill, when this happened:

https://www.youtube.com/watch?v=y69E5e4yFwY

The number 113 from Irvine to Stewarton.

I nearly shat myself. I was wearing a high viz yellow jacket because the weather was bad, and I had two red strobe lights on the back of the bike. I thought I was safe. I wasn’t. Remember that buses have big wing mirrors and how hell that guy didn’t take me out, I’ll never know.

Anyway, when I got home, I sent the evidence to the bus company, complete with the registration number, and to their credit, they came straight back and said that the operations manager would be waiting for the driver when he came back off his shift. I knocked the sound off on the video because this is a family show and you really don’t want to hear the commentary…. ^&%TGF$$£*”$$*&$

What else?

Well big Steve Abraham, the Machine, the Million Mile Man who’s donating his miles to the LCFN challenge, is now eight days into his attempt on the world record for the most miles cycled in 30 consecutive days. I don’t have today’s miles because he’s probably still out there, but to last night, eight days into his adventure, he’d bagged an astonishing 1,730 miles: and a half. That’s an average of 216 miles a day.  And that wee half might matter in twenty two day’s time. The guy is simple amazing. The most I’ve ever done in a day is 237, Manchester to Glasgow, and there was no way I could have got back on a bike the next day. And in any case, I had a broken elbow: I fell off at Carnforth and rode the last 175 miles one handed. Eileidh knows how it is to overcome the pain.

The other big thing that’s happened this week is that I’ve been messing about with my business rule engine. It detects disease by enabling clinical professionals to define what they are looking for, then it generates query sets that go and do the business: all above board and contracted where the opportunity has been recognised and welcomed. This stuff works. Imagine you’re walking around with a condition that might be life changing but you don’t know about it. My rule engine will find it when it’s in the hands of a professionally trained clinical analyst. That’s what my colleagues down in Liverpool do. I’m just their data man, creating the tools to allow them to do their jobs more effectively. That’s 25 years in engineering for you, turning data into knowledge, only to be told that my skills weren’t required any more. Thank you, thank you, thank you. You couldn’t have known it when you released me into the wild, but I’ve never been more motivated, more useful or more effective than I am right now.

When I was a runner 30 years ago back in Cumbernauld, one of my fellow runners coined a phrase “so you’re between injuries then” whenever I was fit. I laughed at it back then but I know exactly what she meant. Roll that scenario forward those thirty years and replace injuries by runners. I’m a coach, and have been (on and off) for all that time, and for the best part of two and a half years, I’ve been between runners. The knowledge is still there, and always will be, but I don’t go seeking athletes anymore. I work on the basis that if opportunity knocks, and someone wants to run a PB at 10K, then I’ll help them to get there. Just like my other rule engine, this one works as well. A week ago, I had no athletes: now I think I may have two. The winter is always a good time to start working with athletes because the first rule of commitment is to set foot out the door. No one ever prospered meaningfully by sitting on their backside.

Longtime lurkers on this site will recall that a year ago, my friend Eleanor committed to riding her bike 500 miles in twelve months, on the back of what I’d been doing on LCFN. But Eleanor’s rules were that she would achieve it organically, by using two wheels for those wee trips, where she used to use four. And you know what? She’s done it: she’s only gone and done it. For a busy, working mum, with a family to keep in order, and a job to keep on top of, this was no easy self imposed challenge. Jane and I have huge respect for what she’s achieved. And now it’s a part of her daily life and those wee miles, here and there, are keeping the Million Mile Challenge scoreboard ticking over. I keep saying it, but every little helps.

And finally…

I’m in Liverpool all of next week so two more days is all I have left on the bike before the railway extravaganza kicks off. Seventeen trains (it would have been eighteen but for a late change of plan) and some very long days lie ahead. Next week’s blog, still to have a theme and a title, unless someone fancies writing it for me, will be out on Thursday night courtesy of the Stella Express.

At least there’s no chance of me being snookered under the yellow.

Goldfinger

This is arguably the most important week in the calendar year of kids fighting cancer: the first week in September. Can there be anyone in the world, who’s on Social Media, who doesn’t know that this is the start of Children’s Cancer Awareness Month?

I know that there are other campaigns throughout the year and calendar months get coloured accordingly. But September is different, because it’s branded to remember and support the fight of kids who haven’t yet had, and in many cases won’t get to grow up to be adults.

Cancer kills 500 kids a year in the UK, and a third of them are lost to neuroblastoma. Even for the children that make it, life has changed forever. The best that a family can hope for is survival and the magic phrase “No Evidence of Disease” or NED for short. NED means that you have lived to fight another day: that you’ve won the latest battle but for many, the battle is just symptomatic of the war.

Childhood cancer in the UK receives less than 4% of the total research budget. The very people who are the future of the nation, who for all we know could grow up to be its brightest lights, are an afterthought in corporate funding. In business speak, rare equals don’t care. That, unfortunately, is the harsh reality, which is sadly ironic because Cancer Research like to use images of kids in their advertising in order to attract funding from the likes of you and I. For that reason, and that reason alone, you should target your donations wisely if children are a high priority to you, and don’t just go with the flow as the leading brands would want you do do.

Anyway, enough of having a go at the corporate face of fundraising, let’s get stuck into some good news…

You’ll recall that last week, I spilled the beans on a few big hitters signing up for the LCFN Million Mile Challenge on Strava. Well in the week that finished last Sunday (we operate a Monday to Sunday cycle on this gig) the team banged in over 3,000 miles. We’ve got 34 cyclists signed up, of which 30 or so are currently active and doing stuff. Top of that pile, and we are so privileged to have him onboard, is Steve Abraham. Steve is the number one endurance cyclist in the UK and today started out on an epic adventure to try and break the world record for the most miles ridden in 30 consecutive days. That record currently stands at 6866 miles if my memory serves me right. Today was day one and the big man set off from his home in Milton Keynes, rode out to Norfolk, gave Norwich a wee wave then legged it home again: 17 hours in the saddle at an average speed of 17.4mph brought home an incredible 301 miles. We are so lucky to have Steve in our team and remember this: he’s doing it in September… Steve Abraham is going for gold. I will feature his progress every day on the LCFN Facebook page.

A little bit of me hopes, when Steve has finished his epic ride, that he will tell the waiting media that it was a gorgeous twist of fate that allowed him to take on this challenge during Children’s Cancer Awareness Month. There can be no greater inspiration for these kids than a guy pushing himself to the very limits, and then some more. It’s kind of in keeping with what we’ve come to witness time and again in the children themselves.

Ironically, Steve had previously set out to break the record for the most miles ridden in twelve months, and was three months into that attempt, when in March 2015, he was cleaned out by a motor bike and broke his ankle. That was the end of that attempt.

Steve’s misfortune was mirrored three weeks ago when another of our team, Zuzanna Ciszewska, was hit by a car two weeks into her own attempt on the women’s twelve month world record. Suzie’s bike was written off in the accident and she suffered significant facial injuries. Tomorrow, she gets back on a bike for the first time since that fateful day, on a machine loaned out to her by Evans Cycles, and she’s easing herself back into the saddle by taking on the 170 mile Manchester to London ride with one of her friends. Suzie, yer some girl, and I’ll be thinking about you this weekend.

My own miles just plod along these days. I’m no longer in the big league with these guys, although I could probably have given them a run for their money a year ago. Thirty six 200 mile weeks in a row, stretching out from May 2015 had me in the best condition of my life, but these days, since I completed the 25,000 miles that I initially set out to do, I’ve eased right back and now I’m only doing 20 to 25 a day. The problem with living round here and riding a bike is the wind and the hills. For those that aren’t accustomed to these parts, Ayrshire is a very undulating county, and an extremely windy one as well. There isn’t a massive 215 turbine windfarm ten miles up the road for nothing.

Talking of the wind, the weather has definitely taken on an altogether more autumnal feel this past week. Although the temperature has been mid teens and relatively pleasant out of the wind, when you’re out there on the open road and fighting it, it has a real cutting edge to it. On top of that, the hernia that I had two years ago really does not like these conditions and it’s all I can do to find the flattest, least arduous route out into the wind before raising the proverbial mainsail for the ride home. For grumbling appendix, read grumbling hernia. I’m guessing that the repair itself is still sound but the scar on top of it is on fire. Uncomfortable is the word.

We had our friends Paul and Janice Gablonski staying with us again at the start of the week on a one night stopover en route to Manchester airport. At the time of writing this, the Gabbis will be back at the Gabba, and I mention this because they’ve taken the Aussie LCFN flag back with them. The Aussie flag (or the Vanessa flag as it’s otherwise known) has a stack of signatures on it, just like its Brit counterpart, but every one of them is an Aussie, or someone living in Australia. So it’s good that the flag has gone back and now we can look forward to seeing the photos coming in from all around Queensland.

Did I forget to mention that awareness is king?

While I’m on the subject of Australia, I took a call from JJ in the middle of the week and he’s been pushing the LCFN story to Neuroblastoma Australia. I like the way this is going, not least because at the very time that we are trying to raise awareness of neuroblastoma through the million mile challenge, Straya is just coming into Spring, and I have a hunch that Neuroblastoma Australia might just be able to jump on this bandwagon, steer it in their direction, and raise a whole wad of sponsorship on the back of it.

Did I not just say that awareness is king? Anna Meares is the undisputed Queen of Australian sport and she’s a cyclist. She’s also an ambassador for the Little Heroes Children’s Cancer Foundation. Is this an LCFN opportunity or what?

I cannot believe where this adventure is right now compared to where it was three years ago. Back then it was just me, and soon to be Wullie Broon fighting in my corner. Now we’ve got a whole crew over in Adelaide, some more up in Brisbane, a sprinkling in Melbourne and Sydney, and even more in Poland. We’ve got cyclists in Turkey and Italy, we’ve got supporters in the USA and Canada (I’ve even seen a photo of an LCFN/EJ wristband in Philadelpia on Facebook) and others in Romania and Sri Lanka.

See that awareness thing….

But finally this week, I want to end on a promotional note. There’s been a lot of debate on Social Media this past week about folk on Facebook following a “Challenge Accepted” chain letter by posting a grey selfie to raise cancer awareness. Every man and his dog on Facebook knows about cancer: so this is probably what it seems, a chain letter to harvest personal information. Call me cynical but there are three types of people in the world: those that do, those that watch, and those that go “WTF happened there?” I’m of the former breed, and knowing that this is Go Gold month, and knowing that I will be working down in Liverpool, out of my comfort zone, in a couple of weeks, I’ve had my finger nails done: sparkling old gold. I’m expecting very strange looks when I’m working on the train, and even more strange questioning while I’m circulating down there. But you know what: my gold nails tell a story, a story of symptoms: sore legs, a swollen tummy, a fever, loss of appetite, a sore head: the list is endless. So when people quiz me about my nails, I will tell them, from the bottom of my heart, why I did it.

It’s an awareness thing…

Goldfinger.

 

Frazzled

Brain frazzled. Thank f**k for the legs. It’s been that sort of a week.

Pressure.

It comes in one of two forms: internal or external. The stuff that comes from the outside you can do very little about, except weather the storm as best you can and hope that it will pass: or that you just get better at dealing with it. For me, dealing with it means getting on the bike and smashing some miles.

But my pressure this week has been a slow burner: a fuse lit 200 miles away but burning intensely bright within. When the bossman said in a late night phone call that he wished everyone had my passion, I just said “it’s the way I am”. You give me something interesting to do, something with an intellectual challenge off the scale, then I’m like a dog with a bone. But this one has been a slow burner. The stuff I’ve been working on this week has been months in the making. Ever since I started working with the team in Liverpool back in March, I’ve known that this was on the cards. This is what I do.

But before I spill the beans, let me turn the clock back five months. I’ve worked in IT for over 41 years and never had a day out of work despite being made redundant three times. I may have a narrow skill base, but I know that within my area of expertise, I’m helluva good at what I do. So at the age of 63, there was a momentary lapse of concentration back in March when I thought I might never work in IT again. I’d just been tapped on the shoulder and told I wasn’t needed anymore. They dressed it up as corporate restructuring but no matter what, you are left asking yourself “what did I do wrong”? The answer is nothing. Five hours and a few text messages later, I was headhunted by the bossman in Liverpool. I haven’t looked back…

Imagine having not just a boss, but a whole team around you, who appreciate you for what you can do. Imagine being in a working environment that you know, instinctively, is right because of what they do. But imagine being in that environment when you know that the stuff that you’re good at can transform the business. I realised that back around April time, once I’d got my feet under the table.

So why is this relevant to the bike story? Because the bike provides both the imagination and the recreation for what I do. If you’re reading this and you don’t go a bike, then my advice would be to give it an hour a day for a couple of months and see how it transforms your thinking. Biking time is thinking time, and thinking time promotes business time. When I get off the bike, that business time is on speed, and the bossman knows it.

So what’s the fuss all about?

The company I’m contracted to work in detecting disease in the general population. That’s their mission. I specialise in data, business rules and knowledge engineering. It was always going to be a match made in heaven after a whirlwind courtship.

Imagine being in a job where the people you work with acknowledge and accept that you’ll take two, maybe three hours for lunch, because it’s ultimately going to make their life easier and more productive.

Imagine being in a job where your exposure to ideas just stimulates more of the same.

And imagine being surrounded by people in your bubble who are supportive of not just who you are, but the way you are?

It’s fantastic. In 41 years, I’ve never felt an opportunity to make a difference to people’s lives like I do right now.

Why?

Because after contemplating how it could be done for four of the past five months, this past week I’ve developed an application that detects disease. You name the disease, my app, in the right hands, will find it. I am a data man not a doctor. My job is to make it easier for people more skilled than me to do theirs more effectively. Simple.

Every person who goes to the doctor gets something recorded on their record. It’s all coded. Codes can be interpreted and used in rules. Rules breed rules. Rules turn raw data into useful information. And the LCFN bike, courtesy of those two hour lunch breaks, turns that information into ideas. Lots of them…

Today that break was delayed until almost four o’clock after a particularly intense eight hour non-stop shift. The stuff that we’re working on just now is so ground breaking that the development work and the conference call screen sharing demanded 100% flat out effort. When I set foot out the door, I could so easily not gone out at all: my brain was fried. By the time I got back, an hour and forty five minutes later, the stress had melted away: all of it.

There are two other major stories this week: the first one is great and I’m so proud of my friend Amelie in Adelaide. For our new readers, and I know there are a few this week, it goes like this: I got to know Amelie through a friend of a friend of a friend of a friend of a friend of a friend on Facebook. Amelie is great. She’s a singer/songwriter who I gatecrashed not long after we’d ‘met’ to write a song for Eileidh. That wasn’t my motive for being her friend I might add: I plucked up the courage to ask her after about a week… J So Amelie wrote the song, she stressed about getting it recorded because she was working on a new album at the time, and now it’s had 20,000 hits. I mean, can you actually believe that? Some random bloke from 10,000 miles away asks you to do a song for a child who’s fighting cancer, you create the most perfect tearjerker in the history of contemporary music and it boosts Kleenex sales around the world. Ammie, you should be sponsored by hankie pankie.

But I’ve saved the best for last…

You know all about the LCFN Million Mile Challenge. I couldn’t just walk away when I reached 25,000 miles so I had this idea, while I was out on the bike strangely enough, to up the target and go for it, really go for it, across the globe.

The Million Mile Challenge is a club on Strava that’s trying to ride a million miles to raise awareness of neuroblastoma.

Do you think that sounds daft? We started in May with just myself and Stevie Mcluskey from my old work: and for weeks we were just a few punters with a dream. Five hundred miles was good week and it was gonna take us a thousand weeks.

Aye right…

Now we have some serious big hitters onboard…

We have Steve Abraham in the team. Steve has cycled 100,000 miles since 2012 and is arguably the number one endurance cyclist in the UK. At the start of September Steve is going to attempt to break the world record for the most miles cycled in 30 consecutive days. The record stands at just over 6,800. Steve’s donating those miles to LCFN.

We have Anita Gordon in Tasmania. Anita is me, albeit 10,000 miles removed. For all the time that I’ve been riding LCFN, Anita’s been riding in support of kids’ cancer in Australia. Anita’s donating her miles to LCFN.

We have Zuzanna Ciszewska who set out to break the women’s world record for the most miles ridden in twelve months, only to be wiped out by a car two weeks into her record attempt. Suzie and her bike are still recovering and she’s currently climbing the walls. Suzie is donating her mies to LCFN.

The game has changed, completely changed. At long, long last, the pressure is off. I checked the leaderboard on Strava tonight and I only just crept into the top ten despite being out for ninety minutes plus every day this week.

The Million Mile Challenge is now the domain of the big boys and girls. Or to put it another way, a whole host of high profile endurance cyclists now know about neuroblastoma, which was my objective all along. And people who follow them will think “what’s this malarkey”, and hopefully they’ll sign up too. A week ago, we were 21 cyclists looking at 1200 miles in a good week: now we’re 32 cyclists looking at twice that. So what I would say to you, as you’re reading this, is dig your bike out of the garage and bag a few miles. Every mile counts. This is a global team effort to make people aware of neuroblastoma: and we are going to win. We are going to ride a million miles, and I suspect it’s not going to take us very long.

It’s been some week. Strong legs have saved a brain that’s been totally frazzled.

Aussie, Aussie, Aussie

Three years ago today, on the 19th August 2013, I set out on my folding mountain bike just before 6am to cycle the five miles to Fenwick. Although it was a trip that I’d done many times since I got my bus pass, this trip was different: and it changed my life forever.

Since that day, around three hundred children in the UK have been diagnosed with stage four neuroblastoma, and around half of them have succumbed to the disease. It isn’t a rare disease. Nor is it an outpatient job as Coronation Street would have you believe.

So as we count down the days to Go Gold For September, it’s perhaps as good a time as any to reflect once again on the perilous state of funding for paediatric cancer in this country. Although I was already aware of the numbers, I read today that Cancer Research UK allocated £5.4m of their annual research budget to child cancer in 2015/16. It sounds a lot, but not when you consider that their total research budget was £404m. Childhood cancer got just 1.33% of the pot.

Excuse me, but kids who succumb to cancer don’t have a lifestyle choice. They haven’t even had a life: yet. Children are the future of our society and they deserve a far, far better deal than that. I think it’s fair to say, and I said it before in the LCFN blog, but CRUK, who pride themselves on being the brand leader in the UK, use images of sick kids to suck people in, then allocate that money on a corporate basis: the kids and their families can effectively fend for themselves.

That is why charities like Solving Kids Cancer are such key players in the marketplace. The money goes where it says on the tin.

While we’re on the corporate charity business hobby horse, let me expose another sleight of hand by a brand leader. Just Giving have been the go to online page for as long as I can remember: indeed I went with them three years ago. What I didn’t know then is that Just Giving cream off three times as much money in admin fees as other online charity vendors. That explains why I have two online pages: I always try to steer people towards my Virgin Money LCFN page because more of the money actually finds its way to the charity.

So when you’re thinking of doing an event, my advice is shop around: don’t just go with a big brand.

Anyway, back to the anniversary…

I didn’t want to just head out at lunchtime as I do every working day these days. I wanted to make this feel special: I wanted it to feel different. Except it didn’t feel much different at all because I elected to cycle to my old work in Glasgow. Back in the day, I used to set out on that trip at 5am: today is was 7am and what a dangerous difference those two hours made. Fast drivers; mad overtaking; traffic queued back at junctions; fumes: this morning had it all.

I posted a photo on Facebook when I got home of White Van Man overtaking my bike on the double white line section of the A77 in Newton Mearns. I’ve been on record for a while now with my assertion that I will clock video footage of a head on smash one of these days. Today was almost that day. The video is on YouTube here https://www.youtube.com/watch?v=Q-VZmtLe7hI.

No doubt someone will notice that there are two cyclists on the pavement on my left as the white van attempts to take out the car coming the other way and people might question why bikes use the road at that point. The answer is simple: I was brought up not to ride a bike on the pavement, and I certainly wouldn’t do it at 30mph. That stretch of the A77 is poorly marked for bikes. At no point, where it morphs from cycle lane to pavement and back to cycle lane, does it say that bikes are allowed on the short pavement stretch. I use it coming the other way because it’s uphill and into the wind and at 10mph on a single lane carriageway with double white lines, it’s asking for trouble to be on the road. But going down the hill with the wind is a different kettle of fish. 25mph is the norm, 30’s not uncommon and 35’s giving it welly. Today I was in the high twenties when WVM swung onto the other side of the road with a car driving straight at him 50 yards away at a combined closing speed of around 80mph. Had it not been for an emergency braking manoeuvre by the car driver, this would have been a serious one.

The major fun factor of the week has been a whistlestop visit by the Gablonskis, our Facebook friends from Australia. I’ve known Paul for years, because of his love for Caley Thistle. Paul’s from Brisbane so his allegiance to the Inverness crew is pretty much in keeping with my own: he married an Invernesian. The first time we met, I didn’t even know he was over but he recognised me from a photo while we were both enjoying a pre match swally in Diggers: and since then, we’ve pretty much kept in touch and Paul stayed with us when he was over for the Cup Final last year. Janice’s visit lasted all of 5 minutes on that occasion because she was running late and had a plane to catch to head back to Straya without him.

I mention all of this because Paul and Janice are taking the Aussie LCFN flag back to Australia when they head home at the start of September. That’s the Vanessa flag, the one that she and I held at Celtic Park: it’s not the one that she and I held at Yorkhill – that’s the one that’s been to America twice, Poland and Spain. Australia has been good to LifeCycleForNeuroblastoma and it feels kinda right that the Aussie flag, that’s spent fifteen months of its life over there, should be going back for more. I am really, really looking forward to seeing the photos of the flag on tour in Queensland. And by the way, Jimmy Harrington has moved to Brisbane from Adelaide, so I would wager a fiver that Jimmy will be reunited with the flag at some point in the coming Aussie summer. This is the same flag that Jimbo signed at PBA FM is Adelaide, live on air in JJ’s British Beat programme; it’s also the flag that he held aloft with Anna Meares at the Velodrome.

Talking of Anna, I really felt for her at the Olympics in Rio this week. To go out in the quarter final repechage as reigning Olympic Champion is a hard one to take. Anna has been a great champion, and with the Commonwealth Games on her spiritual Gold Coast doorstep in two years time, she has a big decision to make. If it helps, Anna, I took a King Of The Mountains crown this week at the age of 63: top of the pile, going uphill, against 220 other punters. But I do recognise that a short bumpy hill in Kilmaurs doesn’t exactly equate to the boards. I would like to see Anna bow on home turf as it were, but I also thinks it’s important that she goes out on top of her game and not amongst the also rans. It’s a tough call.

I mentioned that KOM.  I was vaguely aware, when I came through the roundabout by Walkers’ Cycles on Monday, that I shared a minute and forty seconds with Chris Riddle on that segment. I didn’t know it was for 125th place until later. I was halfway up the hill when I decided to give it some. What I wasn’t expecting, indeed it came as a bit of a shock when I got home and uploaded the ride to Strava, was to find that that ‘some’ had taken me up to second on the leaderboard. That was astonishing, and guaranteed that I’d be back the next day for a proper shot. The tricky thing about these short sharp hills is that is takes a good few attempts to find the best gear. Too low a gear and your legs are spinning furiously and you don’t go very fast: too high a gear and you cannae get any momentum and you don’t go very fast. Either way, it takes a fair amount of trial and error. Anyway, I did go back the next day and I got four seconds off, leaving me on top of the pile by two seconds. But that just meant that the previous King would get an email informing him of his unfortunate abdication, and I reckoned that that would just bring him back out to play to reclaim his crown, So I went back again on Wednesday, that’s three days in a row now, chose a slightly bigger gear and went another four seconds faster again. The gap to second is now six seconds, or 10% of the total time. Now that’s a challenge!

So, at the end of a week that’s seen the Queen of the track lose her crown, and the King of Kilmaurs bag his, the flag has set off on its travels once again.

Aussie, Aussie, Aussie….

On The Road Again

Two weeks on the road, the wrong sort of road, and I could use a rest. Inverness for four days last week has been followed by three days in Liverpool this week. You know how it is, a different bed, not a proper sleep, later than normal nights, earlier than normal mornings, and this week lots of trains, twelve of them in total.

I’m tired.

I think my poor brain is still partially frazzled from the intensity of the heart failure work I was doing last week: Thursday and Friday were particularly intense on account of searching for nearly 2,400 separate five character codes (of unique upper and lower case letter plus numbers) in a list of 180,000 in order to improve the performance of a data search. It’s probably significant therefore that the first two paragraphs of this week’s blog are about work and not about the bike. The bike has definitely taken a back seat these past two weeks.

However there is a big story to report on the cycling front, but it doesn’t concern anything that I’ve done.

You’ll be aware that LCFN has moved on from the original 25,000 mile challenge and is now focused on a global team effort to ride a million miles: the self styled LCFN Million Mile Challenge. There are now 21 riders in the team on Strava, but one in particular is deserving of a special mention…

Zuzanna Ciszewska signed up with LCFN in the same week that she set out to break the official Guinness World Record for the most miles cycled by a woman in twelve months. Suzie’s challenge began on August 1st and if things go according to plan, we’ll benefit from around 30,000 of Suzie’s miles over the next twelve months. You can be sure that the LCFN blog will be featuring her progress on a regular basis. Last week, for example, she notched up 326 miles: an introductory week. Be advised that that was actually a lightweight week and we can actually look forward to 500’s on a regular basis. Crikey, back in the day when I was starting out, I was only doing 500 in a month. Suzie makes me feel like I didn’t try hard enough! Like me, she’s also attempting her challenge around a full time job, which involves her riding from her home on one side of London, to her work way across the other side of the city. I guess she has the benefit of flat roads as opposed to my thousand feet of climbing in each direction, and probably much less wind to deal with, but the traffic must be horrendous. That said, I think I’d take my remote but difficult journey to her congested but flat one any day of the week. The difference, I suspect, lies in the fact that I got my weekends off whereas Suzie can expect to be out there seven days a week.

How did a girl going for a world record end up on LCFN?

Ah… mark that one down to Mouldy: good old Mouldy. Exactly how he signed her up for a couple of legs of the Road To Lisbon cycle next May I don’t know, but one thing led to another and once she was on the Celtic Big Cup gig, she broadened her horizons and jumped onto our challenge too. It’s great when the LCFN message grows like that.  We absolutely need people out there, telling the story, and coming onboard: this is no longer my journey, this is our journey and we need as many messengers as we can get. If you’re reading this and you don’t ride a bike yourself, then maybe your husband or wife does and they could donate some miles. That’s exactly how a lot of people get started and once you’re onboard, the thought that your wee bit is helping the team might be just the incentive to get you out the door. I publish the weekly miles and the overall total on the LCFN Facebook page every Sunday night so you can track our progress on there. It’s also the place to be for everything LCFN: articles, stories and loads of other stuff. To date, we’re just through 8,000 miles between the lot of us. I count of your miles from the week that you sign up.

The other recent ongoing LCFN story is about the wristbands. For a long, long time during the initial bike ride, I toyed with the idea of doing wristbands but didn’t have the confidence that people would actually buy them. But once I joined forces with Eileidh’s Journey, I found both the need and the market. The wristbands are a joint EJ/LCFN enterprise to raise money for future treatment that Eileidh is going to need abroad. Her first round of DFMO treatment in America last year cost #100K, much of which was raised through public subscription. Now that she has relapsed and the NHS has decided that the drug best suited to treating neuroblastoma in the USA and Europe won’t be made available in the UK, Eileidh is once again looking at hugely expensive treatment overseas in order to improve her chances of a long term outcome. This time around, Gail, her mum, is unlikely to get much change out of half a million pounds. It’s a big ask, but LCFN has always been a big challenge anyway so the wristbands are a good fit if you’ll pardon the pun.

Gail is in the process of developing the creatively named Eileidh’s Pop Up Shop idea and the stuff on there will go some way to benefitting Eileidh’s fund. The way the wristbands work is that we are selling them for five pounds each. I paid for the manufacture of the initial batch of 225 and we need to ensure that we keep enough cash back from those to fund the purchase of the next batch. Once we have enough money set aside to keep the ball rolling, everything else goes on Eileidh’s Just Giving page. My hope is that the bands will attract enough interest to make a considerable dent in Eileidh’s need.

On my own account, next Friday marks the third anniversary since I set out to do that very first mile. It seems much, much longer: it seems like I’ve been up and down the A77 for ever. But it being a Friday, I might just allow myself a wee glass of something nice to celebrate the fact that I didn’t give up, I kept the ball rolling when I got to the end, and the fact that wee Eileidh shows no sign right now of giving up in her fight either. If you wanna fight with a smile on your face, look no further than Princess Puddles. I may have started out with Vanessa, Oscar and Mackenzie in my thoughts, but these days Princess Puddles in my main focus. The Puddles video, that has featured regularly in the blog since it was released three months ago, this week went through 19,000 views: that’s not people who’ve gone back and looked at it multiple times: that’s 19,000 different people who have seen it on Facebook. I know Gail’s delighted: I know Amelie’s delighted. I’m just delighted for the two of them. It’s lovely when nice things happen to brighten up other people’s lives. What I need to do now is get cracking on trying to arrange for Lisa Hannigan to cover the song when she performs at the Oran Mor gig in Glasgow in October. Lisa is Amelie’s self confessed favourite artist of all time, and when you listen to the two of them sing, you can appreciate why. The influence of Amelie’s work as Frank Loves Joan is considerable. I suspect that if I can fix it for Lisa to perform Puddles in Glasgow, and we are able to get a decent video of it, then Amelie might be made up for all time. I’m working on the basis that Lisa can only blank me or say no. But then she might say yes: OMG, what if she does?

The LCFN blog itself hasn’t done badly this last wee while. Before June, the most views in a single calendar month was 551, achieved in May 2014 following wee Oscar’s passing. Then the views kind of bumbled along at a consistent 250 to 300 for the next two years, with the odd blip here or there, before June went mad with a 600 plus posting. But that was only a temporary climax because July eclipsed June’s total at the first time of asking and as things stand, the 2014 annual total of just over three thousand views will have been topped before August is out. 2015’s total was bigger by three hundred but that stands to fall too when September ends: a real Green Day moment when it comes…

And so now, back from Liverpool, LCFN will be on it again tomorrow…

Back on the road again.

Out And About In Puddleshire

Every week, by about Tuesday, I get ever so slightly worried that I’m going to get to Friday and have nothing to write about. That’s especially true when I’m out of my routine, which I have been this week and will be next week too.

The headlines this week are that I’ve been in Inverness since Tuesday, done no miles on the bike since arriving, despite having brought the folding bike that kickstarted LCFN with me, and I’ve been to see Princess Puddles. Those are the bones: here’s some meat to go on them…

I’ve been incredibly challenged in my work these last couple of weeks and I’ve allowed it to take priority over everything else. For my sins, I’m developing a module that detects heart failure in Primary Care (that’s a GP practice to you and I) and the demands of that challenge, both analytically and technically, have been immense. My poor wee brain has been bursting, not just with ideas of how I was going to deliver this, but with add-ons that the boss man hasn’t even thought about yet. As with everything I do, I like to deliver more than was expected of me. As ever, competitive dad.

So whereas I’ve become accustomed to lying in until half seven and starting work a minute later, this past couple of weeks it’s been six thirty to seven. On Tuesday, I was already on the keyboard, coffee at my side at 5:30am. Needs must. The boss man was on holiday, due back on Thursday (yesterday), and I had a solution to deliver.

I mention all of this because I approach my job with precisely the same commitment that I gave to all of those days spent fighting with the elements on the Fenwick Muir. I know from experience that there comes a point when the amount of effort that you’ve invested overcomes all of the tiredness and of the obstacles, and you kind of reach a plateau where the results flow, despite you being in a constant state of virtual tiredness. Physical tiredness I can deal with: sleep more, push less hard, all that kind of stuff, but when the demands are mental, then you enter a different arena. Creativity is very demanding, and delivering high quality, inventive solutions straight out of the box can be very draining at times. Waking at six still tired from finishing at nine the night before is a routine that can only ever be temporary on a keyboard. But I love my job, I like to think I’m good at it, and I will keep searching for the balance of work versus play that works best for me.

Inverness was a threefold trip, although when I made the arrangement, it was only twofold. I haven’t been up to see Jane’s parents for any length of time for many, many months, and certainly not this year. The boys had planned to go during Joe’s school holidays but Finn’s working pattern knocked that joint plan on the head. So I suggested to Jane last weekend that Joe and I should go up this week: after all, as long as I have the laptop and a second monitor, I can pretty much work from anywhere. I’d been holding off from going, if I’m honest, because Eileidh has been in hospital in Aberdeen and there’s no way I could take a day out of the current schedule for that round trip.

So on Monday night, I messaged Gail, who was bound to realise from my Facebook posts that I was up the road, to apologise for missing out on a visit during the current trip. When a child is battling cancer as Eileidh is just now, every visit is an important visit and you absolutely want to make every opportunity count. If I’m honest I kind of felt I was letting her down because I got the timing wrong.

Within two minutes, back came Gail’s response: “we got out an hour ago. We’re going home and we’re not back in till Thursday”. My riposte: “So are you free on Wednesday”? “Yup”…

So then I messaged Laura. I need to stop calling her wee Laura but I’ve known her for so long that that’s the way I think of her: a friend brimming with simple homespun goodness, spiced with a passion for doing things that are right and community spirited.  “Laura, what are you doing on Wednesday. Do you have a couple of hours free to go and see Eileidh: she’s home for two days”.  It was a done deal. Laura goes back to the days of the Tartan March when she and two of her pals from their teenage years walked from Oslo to Glasgow between two Scotland World Cup qualifiers (okay, they took a plane from Bergen to Aberdeen but they still walked hunners n hunners n hunners of miles: not as many as Jimmy mind). Another bloke claimed he’d walked the lot but he was a spammer: an imposter. Never claim what you haven’t done, that’s my motto: the truth is always the truth, and if someone other than yourself knows it, you’re in trouble. And beyond that I remember her coming out of Livvy in tears after a particularly cruel Inverness League Cup exit (AET) eleven years ago. As an aside to that game for a moment, for anyone reading this who likes football, Ian Black got booked that night: no surprise there then. And whilst we started the game with Craig Dargo and Graham Bayne up front, we finished it with Dennis Wyness and Rory McAllister. Why did we lose? Well Mike McCurry being on the whistle probably had something to do with it. By the way, Robert Snodgrass was in the horrible custard yellow strip that night: and he kept his shorts clean.

So, back to Eileidh. Laura and I were discussing on the way from the train station how she might be. We’d both seen the upsetting images last week when she was clearly in great pain so we were kind of prepared for the worst. But I said to Laura “I’ve never seen her anything but boisterous, so don’t be surprised if she’s full of beans…

She was.

It was Eileidh who opened the front door to us. It was Eileidh who introduced us to the kittens. And it was Eileidh who was so enjoying being the wee sister with Cerys in tow.

Eileidh has grown up. I haven’t seen her since February and so much has happened in that time. But the hallmark of her growing maturity, for me, came in the shape of the medical box that she carried about with her. She may have been out of hospital but the hospital was not out of her. Her wee box of tricks, to which she was attached by a tube, went everywhere with her. Not once did she even look remotely like whizzing off and leaving it forgetfully behind. It was just part of her routine to pick it up and take it with her. I was mightily impressed. So was Laura.

You know that thing where you do something and it makes you realise just how lucky you are with the mundane life that you lead. Well that hit the spot for both of us on Wednesday. Eileidh is unwell, most unwell, but in typical Eileidh like fashion, she just accepts what’s happening in her wee life, puts on a brave smile and gets on with it. It’s really not difficult to appreciate why so many people across the globe love this wee girl.

And while all of this was happening, my road bike has been in the bike hospital. I’ve thrashed it hard since I came back with sore hands back in March. I might not do as many miles now as I did back then, but I do them faster, and with loads and loads of hills in half the distance so I’m up and down the gears all the time. The latest casualty list includes a new chain, a new rear mech, three new cables and a load of TLC for the bottom bracket: not to mention a seizing back brake. LCFN is only as good as its equipment and I knew that this was the chance to get lots of little niggles sorted while I was away: it’s just a pity I never found the time to go out on the bike that I started the adventure on.

Next week it’s Liverpool. I need to go and see the boss man and discuss strategy on the work front. But if I get down the road early doors tomorrow, I’ll still manage three days on two wheels before the Virgin Express comes calling.

These are busy, busy days: so much going on; so many ventures to explore and fulfil; so much money and awareness still to raise for kids with neuroblastoma. But I’ll remember this week for a day out in Puddleshire.

I’m Gonna Be (500 Miles)

Just about everybody knows the punchline to the Proclaimers classic hit single “I’m Gonna Be” and that song got me off my backside this week to be able to write this blog, featuring that song, tonight. On July 1st, I completed the 25,000 miles that I set out to do almost three years ago. Today, as we home on in the end of the month, I’ve done 500 more.

But that’s not really the point. The point is that the journey goes on, a bit like it never ended and by this time next month, any total with 25 on the front will be history.

And talking of the fight going on, today our charitable beneficiary, Solving Kids Cancer, put out a press release concerning a decision taken by the National Institute for Health and Care Excellence (NICE) with regard to the anti-GD2 antibody therapy dinutuximab. Here is the relevant text of the press release:

The decision to deny potentially life-saving treatment from children with a rare form of cancer could condemn many children to outdated treatment options and a reduced chance of survival.

As a charity representing families affected by neuroblastoma, the announcement that NICE has decided to deny dinutuximab, the only treatment approved specifically for neuroblastoma, to children with this aggressive childhood cancer has profound implications. This is not an issue of seeking to buy extra time for children with neuroblastoma. Whilst dinutuximab is not a cure for all, it has been shown to significantly increase the chance of survival and many children are alive today and living a full life because of this medication. The decision to refuse this drug for children in the UK is at odds with the many countries in Europe and North America where this therapy is the standard treatment for neuroblastoma and risks pushing back advances in treatment to 2009 in the UK.

Fewer than 100 children are diagnosed in the UK each year, of which only a third would benefit from this antibody therapy. The cost to the NHS of giving children a greater chance of survival and a normal life is therefore very small, but British children diagnosed with this cancer in future would only be able to access specialised treatment by taking part in a clinical trial. This is wholly unethical when an effective drug is approved.  The only other option open to parents will be to raise in excess of £500,000 to take their child abroad for treatment.

The term ‘a matter of life and death’ is overused, but the denial of this therapy for NHS patients will have very significant implications for children diagnosed with this disease. We are committed to working closely with families, health bodies, clinicians and other childhood cancer charities to address the implications of this decision and will continue to fight for access to the best possible care for children affected by neuroblastoma in the UK.

I am not a medical person, although I interact with the NICE guidelines on a daily basis across a range of disease areas in my data research work. I am merely an activist and a fundraiser. But what I am reading is that this is a drug that is licensed in the USA and licensed in much of Europe. Therefore, the decision to bar its use on the NHS in the United Kingdom seems bizarre in the extreme. Indeed, if I may paraphrase what one commentator said today over the Government’s decision to procrastinate further on the Hinkley Point nuclear project, the NICE announcement is anything but nice: it’s plainly bonkers.

So instead of dangerously ill kids getting state of the art treatment on the NHS in this country, families are going to have to continue going cap in hand to the general public in order to raise enormous sums of money in order to displace their families abroad. Bonkers indeed.

And so to matters on two wheels. I’ve kind of settled into my new regime of twenty miles (and a bit) a day, which basically means I can blast it, eyeballs out, for about an hour and a half every day. One fifty a week’s a decent return for an old guy retired from the big stuff and it still looks like I can turn in a thousand feet of climbing every day too. Round these parts, yer cannae move without climbing the hills so the only major decision to be made when I leave the house is which direction? It might seem a bit odd, but I never ever leave the house with a route 100% fixed in my mind: it’s 60% at best. Everything is made up as I go along. The only thing that matters is fighting the wind by the easiest route (ie coming home with it at my back) and bagging twenty miles. Everything else is suck it and see, taking each wee country lane on its merits. But today was ridiculous: 27 miles in a big circuit yet the wind appeared to be in my face for at least 25 of them. How the hell does that work? Wasnae happy.

The global club on Strava gained an old Highland March mate of mine this week: SatNav from Landan, except that he lives in Manchester these days, and no longer works for Reuters. He bagged 363 miles last week, which included a 172 in one go. His adventures meant that we bagged a grand between us on the week and our team total now exceeds 6K. People may say we’re never gonna do this. So what? We’re out there, turning those wheels, and once we start banging in a thousand miles a week, week in and week out, it’s only gonna take us a thousand weeks to get the job done. Actually we’ll do it in half that time, you wait and see.

The only other major thing of note that’s happened this week is the arrival of the LCFN / Eileidh’s Journey wristbands. I ordered them just over a week ago from a company down south (for our overseas readers, that means somewhere down in England) and I got an email on Monday morning advising me that the bands had just left the factory: in China. Because I had a tracking number, I was like a kid on the Santa site every few hours: are they here yet, are they here yet? Well just over 48 hours later, they were here. TNT did a fabulous job. Already the consignment has been split up and fifty are currently sitting up the road, 200 miles away at a top secret location in Elgin awaiting collection on Gail’s behalf. I’ve also sold two myself, so including the one I’m wearing, I’ve trousered some cash and as soon as this blog is up on the LCFN site, that money will be going into Eileidh’s Just Giving fund. I’ve decided that the best way of keeping track of everything is to create a spreadsheet with one row for every wristband. Then I can comment on who’s holding what stock, who’s donated what against each band, and critically, has the money been Just Gived yet. It’s my intention that every row on the spreadsheet should tally to an entry in Eileidh’s audit trail. At the same time, we need to hold enough of the kitty back to buy the next batch. At the end of the day, someone has got to pick up the tab. I paid for the first batch from my own pocket but it’s my intention that they should be self financing thereafter, if there’s a demand, that is. If it turns out that we cannae shift the whole of the first batch, then every last penny will go to Eileidh and the bands will become collectors’ items.

What I really need is have people act as agents on my behalf: say someone took ten, then they could sell those just like people sell books of raffle tickets at Christmas. It’s important that the bands sell because on the back of the not nice NICE decision today, kids like Eileidh are going to continue having to go abroad to maximise their chances of long term survival.

But I’ll leave you this week with some slightly re-arranged lyrics: have a right good sing song…

When I make it, well, I know I’m gonna be

I’m gonna be the man who makes it just for you

When I go out, yeah, I know I’m gonna be

I’m gonna be the man who rides along for you

If I get drunk, well, I know I’m gonna be

I’m gonna be the man who gets drunk honouring you

And if I haver, hey, I know I’m gonna be

I’m gonna be the man who’s havering for you

But I would ride five hundred miles

And I would ride five hundred more

Just to be the man who rode many thousand miles

To fall off at your door