A Question Of Semantics

OMG, where to start?

I posted on Monday night that I was just getting the brain back into gear after a bit of an adventurous weekend. The wee muscley man (that’s Ross, my eldest) was strutting his stuff in a muscley man competition for clean muscley men down in Leamington Spa. So that lined me up for circa 700 miles of driving and a couple of late nights (one of them self inflicted, I might add) on top of last week’s 250 on the bike. I was acutely aware, and I mean acutely aware, when I set off at tea time last Friday, two hours after completing a 60 mile day on two wheels, that I needed to be as sharp as a tack on four.

If you’ve been following me from the start, or at least for as long as I’ve been rabbiting on about Omega 3, you’ll know that I have some theories on O3, carbohydrate, protein and all things food. The summary version, which is relevant to last Friday’s escapade, is that a meal of 90% carbs will have you fast asleep within an hour if you’ve just done a hard workout. It’s all to do with a sugar rush, an insulin spike then a sugar crash: your brain is a big user of energy. On the other hand, a meal that’s protein rich will prevent the insulin spike and keep you going for ages. Think diesel as opposed to jet fuel. Throw a bag of Omega 3 into the mix, in terms of maintaining a healthy level of O3 in your bloodstream, and you have all the ingredients to take on Superman status.

I got off the bike at three, scoffed a load of protein foods, then jumped in the car at five and drove 250 miles, most of it motorway in the dark. I’d been up since 5am, journey time four and a half hours: two yawns max the whole way. Zero sleepiness then got the party started. 23 hour day: bed at 4am. That’s sometimes the LCFN way at the weekend…

So. back to Monday night and the need to engage motivational gear. I came into this week on the back of 19 consecutive 200 mile weeks but having taken Monday off to recover, that merely piled the pressure onto the remaining days to keep the run going. No matter which way you do the sums, it’s gotta come out at 50 miles a day average. If you read last week’s blog Because I Can, you’ll recall that I kept piling one Cumbernauld Marathon Walk on top of another until I got beat: then I took a timeout. Well that’s pretty much the territory I’m in right now. The last non-200 mile week was 14th May and I see no point in busting a gut all summer, only to lamely give up that record because I took a Monday off and couldn’t be arsed going for it the rest of the week.

I went for it.

I thought I’d splatted all the LCFN records while I was #GoingForGold in September. But I missed one that says on the tin 50+ miles, four working days in a row. And that became the one that delivered the goods. Easy? Er, not exactly: 1.5C, 0.0C, -2.2C then 2.7C plus fog contrived to make this a harsh introduction to the delights of a pre-dawn winter. All in the dark on unlit roads too. Been here before, but never this early: it’s clearly gonna be a long one…

But enough of all that: what about Coronation Street? The longest running soap in the history of longest running soaps planned to run a story about a wee five year old girl, Hope, who was diagnosed with high-risk neuroblastoma. Whilst the storyline would obviously make difficult and at times distressing viewing for parents of real life victims of the disease, it would at least have the benefit of bringing neuroblastoma out into the mainstream and raising awareness amongst the general public: except it didn’t quite turn out that way. In place of twelve months of residential care, surgery, chemo, side effects and pain, we got six weeks of outpatients, drop the child off at the babysitter then head off to the pub. I don’t need to tell you how I feel about the U-turn because I’ll leave that to Lena Court, whose rant to the Coronation St team says it all:

“To say this storyline should be done because this happens in real life is a joke.

Your story line is so far from the truth it makes a laughing stock of every parent who has lost their child to neuroblastoma!!!! It belittles the devastation it causes the whole family and the lasting effects it has on the siblings. No five year old with neuroblastoma has tests and goes home!!! They don’t have chemo as an outpatient while their parents go out for a “break”. From the moment the tumour is discovered in the abdomen, that child is admitted on an oncology ward then subjected to frightening procedures, scans and surgery to perform a biopsy of the tumour and then put on morphine for the pain!

Then the results are accumulated and the harrowing intensive chemo cocktail of 4 different highly toxic adult chemo drugs are pumped into their tiny body for 24 hour infusions, for four days solid. They are so weak from the poison and so sick, their blood counts drop, they need transfusions, they need antibiotics, they are violently sick and can’t eat. They have tubes for feeding, they lose their hair and they are too sick to go home before the next batch of chemo is due.

This is what happens in real life!

Being told that your 3 year old has a 10% chance of survival is what happens in real life!

Watching your child turn into a walking skeleton is what happens in real life!

Finding out that the chemo has destroyed their hearing, damaged their kidneys and their heart is what happens in real life!

Never going home and having your family torn apart is what happens in real life!

Being told after a year of living with this nightmare that they can’t find any disease but that doesn’t mean it’s gone is what happens in real life!

Then one day it shows up again and before you know it, it’s taken your child’s life. That’s what happens in real life!

Neuroblastoma is aggressive, relentless, harrowing and it destroys lives. It’s not treated in an outpatient department with a few appointments here and there. You don’t go home for months.

All this storyline has done is angered parents who have lived with the reality of neuroblastoma. People watching Corrie won’t realise that there’s no cure for it, they won’t realise that the treatment protocols don’t work or that the UK is so far behind America and Germany. They won’t realise the desperate need for research funding.

You’ve made it look easy to treat and easy to cure. That’s not real life at all!

And that brings me to the heart and soul of this week’s blog…

Since I got on my bike in August 2013, I reckon that around 220 children have been diagnosed with neuroblastoma in the UK. Sadly, of those 220, over a hundred probably won’t make it. This week alone the stories of two more children made it onto my timeline: boys whose families have been decimated by the news summarised so evocatively in Lena’s extract.

One of the boys, Zakky Brennan, hails from Belfast and that fact alone took me back to Oscar Knox, the boy I never knew, but whose parents I have grown to know and admire for their spirit, their compassion and above all their love for their son, and indeed his memory. Leona did a beautiful job on the Radio Four Appeal on behalf of Solving Kids Cancer last weekend. Zakky is in the Sick Children’s Hospital in Belfast where Mouldy and I went with Clare Paterson, Charlie Duncan and Nikki from the NCCA at the end of Cycling Santas last Christmas. Zakky being in a place that I know makes it real. It brings his story home and gives it a proper meaning.

The second lad, Ben Williams is four years old and I saw two photos, taken four weeks apart, which demonstrated the speed with which the disease can reduce a child from a bubbly young lad to a sleepy skeleton, much as Lena described above. I chose not to share the photos in the LCFN Facebook group because one of them is harrowing.

Zakky and Ben are new cases: by the time I write next week’s blog, there will be two more, possibly three. That’s real life.

Now on Wednesday past, I went through 18,750 miles, which in real terms is three quarters of the way to 25,000 miles. Remember what went on the branding of LCFN back at the start? It’s on the flag in big letters:

1 Man                    4 Years                25,000 Miles

I knew what I meant by that when I said it, but I’ve been working in IT for over 40 years and I know now that I need to review the semantics of how that statement hangs together.

Is it                        1 Man        4 Years OR 25,000 Miles

Or is it                   1 Man        4 Years AND 25,000 Miles

Therein lies the question.

At the end of the day, it’s a question of semantics.

You decide…