I’m On A Train / London Calling

The first double “A” side in quite a while…

“I’m on a train”!

Remember the old days (about ten years ago) when some super slick salesman would be sat across from you, sealing a deal and making the whole carriage aware of it? Well that’s me just now, except I’m not a salesman, I’m not on the phone and I’m not sealing a deal. I’m just having some fun, enjoying a beer and blogging my way to London to play Ellie the Elephant at the NCCA’s annual Fun Day on Saturday.

The invitation came in early June when it was suggested that I might like to park my bike and do the 15,000th mile at the gig in Richmond Park. However as I was just two days away from 15K at the time and I really didn’t fancy six weeks on the sidelines, I countered that suggestion with one of my own: how about we make it the 16,000th?

Deal…

Then we went on holiday for two weeks so by the time I got back on the bike, I still needed 711 miles in order to arrive in Richmond on 15,999. Even by the ridiculous standards of this adventure, that was a tall order. However 259 two weeks ago broke the back of it, and following that up with 231 last week left only 221 for this week. It should have been an absolute breeze but unfortunately the long term impact of 2,500 miles in just ten weeks has left my hamstrings tendons, particularly the right one, in a very argumentative state. They’re the gristly bits behind your knees, and their job is to join the hamstring muscles at the back of your thighs to the top of your lower limbs. When they’re sore, big gears are a problem and so are hills, and that in itself is a problem because whilst I can choose a lower gear, I cannot escape the climbs: 1100ft is on the menu every twelve hours. The workaround has been to use lower gears and pedal away furiously like Froome chasing Quintana up an Alpine climb. It’s a tactic that has got me through the week.

Saturday will further cement images in my brain of children in various states of wellness, unwellness and recovery. It’s the nature of neuroblastoma that the treatment is as aggressive as the disease itself. Twelve months realistically buys you a chance to have a chance. It’s a bit like buying a raffle ticket where the top prize is a lottery ticket.

As an aside, can I take a moment to share my own basic understanding of the disease. It’s hugely more complex than I’m describing it here but basically neuroblasts are embryonic cells from which the ends of the nervous system are formed. In neuroblastoma (where the oma suffix defines cancerous tissue), the nerve endings randomly form solid tissue in the form of a tumour instead of the healthy nerve cells that would otherwise be the case. I say randomly but in reality the early tumours typically grow in common places, making diagnosis more certain at stage 4. But because neuroblasts grow throughout the body in an infant, the malfunction of the process is progressively more serious as it develops. That, in a nutshell, is the challenge of diagnosing, treating and managing neuroblastoma.

And so to matters of the miles…

It’s always fun whenever I cross a thousand mile boundary, to look back at the workload in terms of effort and calories. And this one is no different:

Miles: 16,000

Average speed: 12.5mph

Hours on the bike: 1,280

Calories recycled: 768,000

Pints of Stella burnt off: 3,072

I’m not suggesting for a minute that I’ve actually downed three thousand Stellas in the last two years (I probably wouldn’t be here to tell the tale if I had, because it works out at eight for every day that I’ve been on the bike) but it does equate to about three grand’s worth of fuel, and that’s not to be sniffed at.

When I went through fifteen thousand miles, I remember being really, really enthused at finally having less than ten thousand miles to go. It was the biggest fillip I’d had in ages. But that feeling has long gone. I’m not sure how it’s been in the rest of the country, but certainly in the West of Scotland, this has been the worst summer in living memory. There’s been precious little warm sunshine, plenty of rain, and loads of unseasonal prevailing wind. In short, it’s like autumn arrived three months early, albeit with the caveat that daylight has remained exactly where it should be. It’s becoming a nagging issue simply because sunrise is now fast approaching the time I head out the door in the morning and I feel like I never got to enjoy the summer of 2015. Instead I’m already starting to dread what’s waiting around the corner…

I suspect that I survived the winter of two years ago because (a) I was new to this game, and (b) we only had one or two days of sharp frost and hee haw snow. Last winter was a completely different kettle of fish and even though I can quote verbatim that I lost nine weeks because of a hernia op, in reality I would have lost at least five of them in any case because my normal commuting route was simply too dangerous to ride on. That’s the image that’s implanted in my brain as the autumn that was supposed to be summer morphs into the autumn that actually is autumn. I feel completely torn between “I need these miles to get this winter over and done with” and “to hell with it, just back off the miles, get through the winter and pick up the tempo again in the spring”. The reality is, nothing that I can do over the next six months is going to change the fact that October to February is going to be nothing short of hellish. Last winter I termed it the hundred days of hell and I see no reason to change that view just now. So I suspect the tactic once the nights really start drawing in is to let the weather have its way, but turn up and get by without busting a gut: with a wee target in mind of course (more of that in a moment).

Another reason for taking that approach came to me from a most unlikely source this week. I was pointed in the direction of Ronny Allan’s blog by Jackie Barreau in Australia. I don’t actually know where in the world Ronny lives, although I suspect it’s the UK. All I know is that he has a remarkable blog about living with a rare but incurable neuroendocrine cancer. This week Ronny published a piece entitled “Sorry, I’m Not In Service” with a photo of a bus on the front cover: the fact that the bus is a blue Stagecoach number is a bit of a giveaway on the residence front. In it, he muses about being irreplaceable at work, and how, ultimately, that feeling is a characteristic of Ronny being Ronny rather than any perception of the business feeling that he has to be at work. It’s a modern day trait where you feel enslaved to the job. What Ronny discovered at the end of the day is that the only paymaster you must report to is the one inside your own body: ie listen to your body and do only those things that it says that you are capable of and able to perform.

My problem is that I feel like I have three jobs: one is actively spending four hours a day in the saddle; another is marketing LifeCycleForNeuroblastoma to satisfy who in particular? Is it me or the people who think I should be doing more to market me? And then there’s the actual job that I get paid for. That’s three conflicting demands that each require brain power, will power, motivational power and at the end of the day, just get through it power. The first three can be very, very draining but the last one is the backstop that says “thou shalt not pass”.

So what’s to do? A year ago this week, I was sat on 7711 miles: today the clock reads 15999 which includes nine weeks out, plus holidays. In a blog that I put out there at the end of August 2014, I predicted 17,000 would be done and dusted by the two year anniversary on 19th August. I won’t actually make that but hell, I’ll be close enough to make no difference. 17K will be up by the end of the month, followed by 18K before September is out. 19K will be happen in October and the next big target on the horizon is to make 20,000 miles before my mother turns 90 on the 1st December. I made 15K before Jane’s birthday in June so 20K is entirely feasible by the end of November. It’s 44 miles a day: 26 in and 18 back and coming off the back of 48 these past three months, it’s a relative rest. The split is important because the prevailing wind is predominantly behind on the way into work, which allows for a defensive mindset on the way home.

So back to where I came in: two years ago, I knew no one and nothing on the neuroblastoma landscape. But a Facebook group with almost six hundred followers that has evolved into a hub of research papers on all forms of cancer, plus a few other bits and pieces from me, suggest that maybe I have become that salesman after all: but I’ll never be super and most definitely never slick.

“I’m on a train”.

Because London’s Calling….

Double Puddles

I keep worrying that one of these days, I’m going to get bored of doing this. That thought registers about 8.2 on the dreadter scale simply because there’s nothing worse than falling out of bed and getting on at bike at five o’clock in the morning when it’s dark, cold, wet and windy and you don’t want to be there anymore. But fortunately that day shows no sign of happening anytime soon because nice things keep happening week on week. And this one was no exception…

You’ll recall that two weeks ago, I set myself the target of going to the NCCA Family Fun Day in Landan next week with 15,999 miles on the clock: and that to manage that I had to bang in 711 miles in 15 working days. The 259 from last week basically set the whole thing up and this week I’ve actually found myself having to keep a lid on the miles to avert from what I’ve termed premature congratulation. Three months of averaging 48 miles a day has made it much, much harder than I’d expected to drop back into the low forties. These are very strange times. However as I sit here with six of the original fifteen days still to go, the target has shrunk to a relatively diminutive 268 and the Landan celebration is virtually in the bag.

But that’s only the tip of the iceberg of excitement: you know how they say that most of the action is below the surface? Well read on…

On Sunday morning, at daft o’clock, I jumped in the motor and headed off to Glasgow Airport in the hope, at the third time of asking, of seeing Princess Puddles:

Plan A failed when Eileidh’s team found their preferred flight to Philadelphia fully booked and got bumped by 24 hours. We were due to get on that original flight at the other end and the crossover offered definite catch-up opportunities.

Plan B was to do the whole thing in reverse because as it turned out, Eileidh flew out on the plane that we flew in on: but our flight was delayed from Philly and Eileidh and her entourage had already cleared security by the time we emerged unscathed from customs.

Plan C was to therefore to ambush them on their return.

But Houston, we had a problem: we’d been out the night before, over in Irvine, and the car broke down on the way home. For the technically minded, a coil spring broke and took the nearside front tyre with it. No point in putting the spare on then. By the time the AA turned up it was pushing 3am (we waited two and a half hours by the way: they don’t tell you that in the advert). We finally fell into bed at the back of four and I set the alarm for half five because the Princess was flying in at 6:30am. I know it sounds ridiculous but sometimes in life, you’ve just got to do what you’ve got to do. Here’s a wee girl who for the past twelve months has been fighting for her life so who am I to worry about a lack of sleep? It was only through a public appeal that Eileidh got the funds to allow her to get ground breaking treatment in the US that’s not currently available in the UK. That’s why it mattered to go and greet her.

I first met wee Eileidh during Cycling Santas last Christmas. She was not a well girl. I met her again before, during and after the Highland Bike back in May. So this was a chance to see her again, not least because right now, she’s well. I dumped the motor on the outskirts of Paisley, ten minutes walk from the airport, and parked myself on a seat outside international arrivals: naturally I had the LifeCycle flag with me. It’s done almost as many miles as the Princess herself now. Loads of passengers emerged but no one that I recognised: “surely I haven’t missed them while I was playing on my phone” I thought. Then I spotted Cerys; and she spotted my NCCA T-shirt and called to her mum. “Mum, look, it’s Steve”. And that sparked almost two hours of catch-up and coffee as Gail brought me up to speed with the trip, the treatment, the schedule and the prognosis. But the best bit was getting wee Eileidh to sit on the rail next to the sign that says “Welcome To Scotland”, or in her case “Welcome Home”. It was a wonderful moment and made for a great photo opportunity.

Early morning fully justified!

The next bit of excitement, which has been running on and off all week, concerns the followers of this adventure. For ages and ages, the number has hovered around 200, which is okay but it’s not in the ballpark of where I need it to be to get the message out there that neuroblastoma is a deadly disease that needs to be caught early and treated quickly. Nor does 200 help with major fundraising. So last weekend, I went on a bit of a charm offensive. The first wave of attacks invited people who already follow LFN to add friends from their own Facebook timelines. Anyone can do it, and it’s by far and away the most effective way of spreading the word. Sure, some people then remove themselves from the group but that’s fine: it’s not everyone’s bag. But what I do find is that about three quarters of those added do actually stay the course. And that’s all I’m looking for. So if you’re reading this and you’re new to the group, and especially so if you’ve got small kids and you haven’t yet added all your friends to the LifeCycle group, what are you waiting for?

I hope I’m not being oversimplistic but I describe neuroblastoma as cancer of the nervous system in small children. It results in multiple tumours, is extremely difficult to treat effectively at stage 4, when is often first diagnosed, and it causes incredible pain. If you’ve ever had sciatica, imagine how that would feel all over your body, along with all the side effects of chemo.

Gail, Eileidh’s mum, posted an image on Facebook earlier this week that sums it up perfectly:

“You wonder why I want you to spread awareness when your child doesn’t have cancer? At one point, neither did mine. STOP childhood cancer”.

That’s it in a nutshell. It might not be your child today, or even next week: but it might be next month or next year, or the child of someone you know. That’s why we’re all in this together. I just happen to be the bloke on the bike that gets up at 5am to cycle 40 miles every working day, climbing over half the height of Ben Nevis in the process. The real team players on this gig are you people, my supporters.

And now, because some special people went to town on their friend lists, the LifeCycle group has over 500 members and it’s growing all the time. This time last week it had 252. I even dare to dream that this could be the lift off that I’d always thought possible. My wee band of supporters in Australia used to be sitting pretty at number 2 in the country list but now they’ve been relegated by a 50 strong delegation from Poland. Who’d have thought that a month or two back? Guys n Gals, you’re just gonna have to chase as hard as your baggie capped countrymen if you want that slot back!

Whilst welcoming all the new followers to the LFN group, let me explain how you can help even more than just being here and following the story. Back at the start, I suggested that my supporters might like to match my miles with pennies: so for every mile that I ride, you’d back me with a penny. It was loose change back at the start but as I’ve got stronger and more adventurous, so the number of miles has grown to a bag of crisps and a can of juice’s worth of pennies every week. But it’s still enough to give you a right good feeling when a child gets the treatment that they desperately need: ask anyone who helped get Princess Puddles to the States.

Here’s the link to the Virgin Money Giving account (I do also have a Just Giving account but it was pointed out to me after I’d opened it that Just Giving take three times as much as Virgin in admin fees):

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=LifeCycleForNeuroblastoma

On the long term front, I’m finding myself dwelling more and more on what’s to happen when I’ve done the 25,000 miles. Then what? Back at the start, I hadn’t really got a clue what I was capable of and I set the initial target at 20,000 miles before retirement. I’m 62 just now. But by the time I got the business cards made, eight months in, I was pretty well set so I upped the target to 25K. Now I realise that even that target is way too low and I’ll reach it almost two years ahead of schedule. What happens after that is dependent on a number of factors, but right at the top of the list are the conversion of effort into followers, the conversion of followers into research funds, and how my tired old body is handling the workload. I’m almost tempted to request that someone should start a discussion thread on the LFN group with ideas for what should happen (next) in the summer of 2016.

But for now, let’s just relax in the afterglow of Eileidh being home and the group having mushroomed…

Double Puddles!

Puddlemania Hits The States

Often, things never quite work out the way you’d hoped but you just roll with the punches and move on. I’d hoped that when we got off flight 768 from Philadelphia last Saturday morning, Princess Puddles would be holding court in the departure hall at Glasgow Airport. But alas, we were almost an hour and a half late due to maintenance issues Stateside and the Princess and her entourage were long gone through security by the time we emerged from the green channel. There will be another opportunity, another time….

The big story on the neuroblastoma front this week is that Princess Puddles has started the DFMO trial at the Helen DeVos Children’s Hospital at Grand Rapids in Michigan. I swithered over whether to add the word finally as it seems to have taken forever to get to this point but everyone who has followed Eileidh’s Journey will be overjoyed that she has taken another step on the long road to a fulfilled life.

Now at this point I need you to bear with me, for reasons that hopefully will become clear in a couple of minutes. As I mentioned last week, I’m currently reading “Ya Can’t Cancer Ruin Your Day”, the email story of James Birrell’s fight against the disease in the late 90’s and early days of this century. James had an older sister, Rebecca, and a wee brother, Ben, who was about four when the question arose about how cancer had affected the family. Ben’s take on it was “cancer’s fun”. Now let me stop you there and explain the context. When James became ill, the Birrells made the conscious decision to cram as much family fun into their schedule as was humanly possible according to James’ condition at any particular time. There were trips to the zoo, train rides (up behind the driver), appearances on kids’ TV shows, one particular excursion to operate some pretty huge cranes, baseball games and so on and so on. Every time that James was well enough, they did stuff dawn to dusk, and it was that lifestyle that Ben was referring to when he said that cancer is fun. We all know that there’s a completely different side, that a four year old couldn’t possibly contemplate, that isn’t fun at all: far from it.

The reason I mention this is because I’ve been thrilled by the happy and in the main wholly relaxed posts coming through from America on Eileidh’s Journey on Facebook. The zoo trip was clearly a big hit with everyone, not least Miss Puddles herself, who was having such fun getting up close and friendly with the animals. Then there were the huge ice creams (I know from personal experience the previous week that there’s no alternative to huge when it comes to food over there) and the restaurant foodovers. And that’s before you contemplate Gail and Callum sitting out outside at midnight in 25C watching a live lightning show. Eileidh’s Journey’s has morphed, albeit for now, into a happy place where everyone is having fun and apart from the business side of the visit, it appears from the outside to have been a great family holiday. That makes me very happy.

Now, to matters on the bike…

A few weeks ago, I received an invitation from the NCCA to join in the Family Fun Day at Richmond Park in London on 25th July. However I think there’s slightly more to it than turning up like her Majesty and waving an arm from the LifeCycle bike: for me, this will be an education on life at the sharp end of neuroblastoma, talking to families about how the disease has changed their lives and how they are adjusting to the demands of the treatment on top of everything else that the family has to do. In that sense, it has been a great help to have read Syd Birrell’s wonderfully uplifting book because at least I have an insight into how one family met the fight head on.

When the invitation came through, it was with a request to perhaps park my bike, or at least slow down on the miles, so that I could do the 15,000th mile in Richmond Park. Alas, the request came through just two days before I was due to crash that milestone back in the middle of June. So I explained that whilst it really didn’t fit my schedule to park up for six weeks, what I could do was re-focus on 16,000 miles and see if I could achieve that in London. And so the Richmond Challenge was conceived. The only problem was, this conversation took place just a week before we were due to go on holiday for two weeks, leaving precious little time to bag the required miles. But I came back from the holiday totally refreshed (if a little jet-lagged) and with a razor like focus that I haven’t had for quite some time. To put it bluntly, I was up for this. And so it was that last Sunday night, I declared the challenge on the LifeCycleForNeuroblastoma Facebook page: 711 miles in 15 days to leave me nicely poised on 15,999 miles when I step off the train at Euston. Believe me, that’s some challenge.

The requirement comes out at 47.4 miles for each of the 15 days that I’m at work between last Monday and two weeks today. That’s 47.4 miles on the bike, in whatever weather Judith Ralston decides to throw at me, on top of a full working day. Oh, and chuck in 2,500 feet of climbing each day for good measure, because unfortunately the extra distance, over and above the overall daily average of 41 miles, carries with it a payload of further hills.

But get this: the daily average since the beginning of April is sitting at 48, and there’s nothing quite like a good track record for injecting some confidence into tired old legs. Unfortunately the downside of coming back into something as demanding as the Richmond Challenge (after two weeks off) has been the excruciating effect of lactic acid. The big thigh muscles that have served me so well were fine on Monday and Tuesday but by Wednesday night the full impact of the effort was making its presence felt in no uncertain terms. Last night (Thursday), I declared on the LifeCycle Facebook group that “it doesn’t matter that my legs are tired, this is about the result”.

Well, here’s the result:

  • The most miles in a single working day (today): 65
  • The most miles in a single working week: 259
  • The highest number of least miles in a single working week: 48

All of a sudden, that intimidating target of 711 miles in 15 days, with its 47.4 miles/day average, has shrunk to 453 in ten days at an average of 45.3. It actually feels like I’ve just done a week of chemo on my legs and shrunk the size of the tumour from 47.4mm to 45.3. That’s a scary but hugely significant thought.

When I spend even more time on the bike, as I have done this week, I start thinking about all manner of crazy stuff, some of it about work, and some of it just about stuff. Most of you will know by now that I work on the principle that if you don’t ask, you don’t get, and that occasionally nice people say yes. Well here are a couple of nice yes stories:

Remember when I crashed into a fallen tree in the dark last October and knackered my shoulder? Well that injury eventually sent me off in search of a physio as it was actually getting worse not better while I was laid up after my hernia op: quite the opposite of what I was expecting. In fact it took about two months of some pretty intensive therapy to get it back into some kind of shape (where, for example, I can indicate left without pulling a funny face). I have my email account set to notify me on all manner of things but in particular if a donation comes into LifeCycleForNeuroblastoma through either the Just Giving or Virgin Money accounts. So imagine my surprise and delight while we were away when a message flashed up that the girls up at Physioflexx in Stewarton raised £50 for LifeCycleForNeuroblastoma at their summer barbeque. I am both touched and honoured. Thank you ladies. Now I’ll need to fall off again to generate some more business for you.

The other nice thing that has happened is that Jackie Barreau, who I only met through Social Media last week through a discussion on Twitter about the Women’s World Cup, has linked LifeCycleForNeuroblastoma for her site LoveHopeAndCourage which deals with with Grief And Bereavement Support. The fact that Jackie lives in Adelaide, is a friend of Jimmy Harrington and is about to be initiated into LifeCycle Team Adelaide is just a remarkable coincidence. Someone up there is working some very special magic. Wee Oscar? Jackie’s site, which I recommend that you visit, is https://lovehopeandcourage.wordpress.com/helpful-links/

I can’t leave you this week without another plug for Fire Tiger. I’m not sure whether mutual appreciation is the right term to use because I sure as hell love their music, but Tiff, lead singer with the band, has done me a huge favour by retweeting the LifeCycle blog to her followers. She has 35,000 of them, a number that I can only dream of. But now, what’s happening is that some of the people who follow Tiff are getting the message and also liking the blog. This is how, together, we are slowly but surely getting the message out there about neuroblastoma. So I’m going to leave you this week with another track from Fire Tiger’s impressive debut album:

The Good, The Bad And The Ugly

If LifeCycleForNeuroblastoma is to mirror the disease itself, as I previously said to myself that it would, then I’ve come to realise that there will be good days and bad days and that the journey is liable to lurch from one to other without notice or invitation. The good days will be full of optimism and sunshine, warmth and pleasure. In stark contrast, the bad days will be characterised by pain, by misery, by cold and by nagging self doubt. I’ve experienced many of the latter, most notably during the long winter months when I saw no daylight for a hundred days in a row, the so called hundred days of hell. Those days were perpetuated by surgery which left me wondering whether I would, and indeed could, come back as good as before. A thousand miles in May laid that ghost to rest.

I’ve been thinking that maybe one of the reasons why this good day/bad day scenario is so well suited to LifeCycle (or is it the other way round?) is because it’s happening in the West of Scotland, all too often a wretched place weatherwise with a climate that tests one’s resolve to breaking point: but fortunately, never beyond. Not yet anyway.

I’ve also come to realise that beating neuroblastoma itself is hugely demanding: of the child, of the family, and most certainly of medical science. I read this week that whereas childhood leukaemia carried an 85% mortality rate a generation ago, now the figures are reversed and up to 85% of children survive. Neuroblastoma has a long, long way to go to achieve numbers like that but it’s only through the dedication and desire of the medical profession to keep pushing back the barriers, aided and abetted by the families of the suffering, that such an outcome can be realised.

What of the other similarities and differences between the disease and the bike ride? Well for a start, each can be countered in a variety of ways. Neuroblastoma is a progressive disease, yet simultaneously aggressive. The bike journey is progressive in the sense that it accumulates miles, yet it too is aggressive if you attack the target in the manner that I choose to do most of the time. An alternative treatment is to drip feed smaller doses of a cocktail of drugs into a child, and this is often effective in halting the progression of spread. With hindsight, I liken this to the approach that Leona demands of me from time to time when my judgement is impaired by a demand for even greater effort. And against all of this, normal life has to go on: family, work, interests, both personal and joint, they all demand to be satisfied alongside this ongoing cocktail of early starts, late finishes and inevitable fatigue. I still don’t know how the parents of children with neuroblastoma manage that juggling act. My only experience is of being presented with a choice at 5am every morning. Stephen Knox once noted that in having this choice, it set me apart from the reality and it’s an interesting observation. However in the cold light of day, choosing to get on the bike every twelve hours is the very same in my mind as choosing treatment over the alternative.

I read earlier that the worst case scenario for a patient is (1) the chemo that we’ve been using is losing its efficacy (2) there are no other known therapies to try (3) we do not have a lot of time. I liken that scenario to the marketing and hence the fundraising of my time on the bike. I’ve tried the personal touch through social media and it is undoubtedly losing some impetus. I still cling on to the notion that there is a benefactor out there, perhaps a corporation, who would see mutual benefit in backing my adventure with hard cash. But time is running out. I have less than a year to go….

At the start of this week, I promised myself that I would write the blog on the plane coming home from America, where we’ve been on holiday. But the events of the early part of the week, most notably Princess Puddles being declared fit to travel to the US for specialised treatment to help prevent a recurrence of her neuroblastoma, coupled with some ideas that I had for musical interludes, meant that Wednesday night was spent with a beer or two and an over energetic mind: the Kids In America blog was the direct result and it duly saw the e-light of day in the early hours of yesterday morning.

But there are dark forces at work out there in the great unknown, and whilst this week’s blog was done and dusted 24 hours ago, something didn’t fit with just leaving it like that…

So as I’m writing this, I’m on a plane from Philadelphia to Glasgow. The original plan is reality unlike our original plane which was pulled from service with a technical fault twenty minutes before take off just we were about to begin boarding. We were subsequently diverted onto an incoming plane that had just just arrived from Amsterdam, leaving our carrier, US Airways, to very much make it up as they went along. Whether we get re-united with our luggage on arrival in Scotland remains to be seen as we haven’t seen it since New York and it will certainly have required a last minute transfer when the original 757 was pulled from service.

Why am I sharing this?

Because when we disembark from this flight in a little over four hours time, Princess Puddles will getting on: indeed Team Puddles comprises the whole family, including Gail’s dad who I gather has been assigned the role of taxi driver for the duration of the week long trip.

Eileidh’s visit to the States matters greatly because her life very much depends on it. The relapse rate from Stage 4 (advanced) neuroblastoma is high: around 80%. Without the specialised DFMO treatment that Eileidh will receive in America, the odds are stacked against her. It is the fear that all parents of children with the disease have to go through. If the child relapses and the disease returns, then it is almost always more aggressive than before and the outcome far less certain in terms of survival. I know with some certainty that Vanessa Riddle has overcome neuroblastoma twice and it is remiss of me not to know whether Mackenzie Furniss is a one time or a two time survivor. Right now, Princess Puddles is a one time survivor and everyone who worked so tirelessly on her behalf to get her Stateside hopes that she never has to face that battle a second time. That’s why this matters.

Before we boarded the flight, I kept one last appointment with Facebook in order to advise Gail of what was happening to her proposed schedule: 80 minutes late on takeoff is quite likely to have a knock on effect to the returning flight due out of Glasgow seven hours from now (and we are not even one third of the way over the Atlantic yet).

When I penned the midweek blog, Eileidh was the only child I knew of in Scotland fighting neuroblastoma. Now I also know of wee Hamish, aged two. The same Facebook session that reported the plane drama in Philly sadly brought the news that Hamish has become the latest Scottish youngster to receive the support of the NCCA. I felt impotent in the sense that I don’t know actually where in Scotland Hamish is fighting his corner but intend to make it my business to let his parents know that the LifeCycle Man is riding this journey alongside them. As I’ve said before on this journey, I might not be breaking the bank in terms of donations (currently heading north towards six grand) but I still think I’m doing a decent job on awareness.

There have been many positive blogs these past few weeks, driven on by a surfeit of miles and a desire to mark new boundaries in recognition of the effort. But this blog is not necessarily one of them.

This blog is a reflection of having met Scott at Solving Kids Cancer. Scott gave me a gift, a book that brain dumps the emotions of a parent through a series of emails, many written late at night whilst painfully tired. I read fifty pages of “You Can’t Let Cancer Ruin Your Day” on the beach on Monday. I read another hundred pages today. Scott told me that even though he had a copy of the book, he’d never read it: he didn’t need to. Leona once said that “I got it”. I now know that to be a partial truth. For now I have a completely different view from before. Remember where I came in, good day/bad day? Well that’s the reality. Except that you invariably get a surplus of one or the other depending on the spread and the outcome of the disease or in my case the machinations of the weather.

This is going to be a long road: and already I know that the good days of summer will all too quickly be replaced by the cold, dark days of winter: and the downright ugly days when basic survival is the only show in town:

That’s “The Good, The Bad and The Ugly” of this bike ride.

Kids In America

This blog is the biggest open goal of all time. With no keeper in nets and the ball proverbially two yards out dead centre, “Kids In America” is a gimme…

Hard on the heels of last week’s Fire Tiger blog that brought the 80’s styled LA pop/rock band to the LFN party, I couldn’t help but compare Tiff’s performance on ‘Energy” to that of Kim Wilde on her smash hit from thirty odd years ago. But of course, it’s not just about the genre of the song: it’s the message.

“Kids In America”.

When I woke (early) on Monday morning, it was to discover a post on Eileidh’s Journey that Eileidh’s test results were due at noon. As I was reading this at half five in the morning local time, that made it only ninety minutes away. I was nervous. Very nervous for Gail, for Cerys, for Callum: and of course for wee Princess Puddles herself. So much effort has gone into raising the £100K it’s going to cost to get Eileidh to the States for treatment that she cannot get in the UK, it had all come down to this.

I already knew the schedule, and tight it was: flights to be booked, ESTA’s to be approved, accomodation to be sorted, travel insurance to be arranged. And it all hinged on the consultant’s verdict at high noon. I can’t even start to imagine how Gail felt as she walked into that room.

Then at 7:43am local time, an instant message flashed up on my phone…

“All clear 🙂 no sign of any cancer cells so we’re off to USA! 😀 xx”

I was ecstatic, absolutely ecstatic. I even woke Jane from her slumber to tell her the news, for I felt in that moment that everything that we’ve all worked for these last two months might after all deliver the result that Gail and her family feared might never happen…

“Kids In America”.

For me the story is made all the more poignant by our kids being in America just now but the the coincidence doesn’t even end there. Princess Puddles is flying to Philadelphia on the very same flight that we’re going back on. We get off: she gets on. As I sit here writing this, I don’t know whether our arrival at Glasgow Airport will allow enough time for a group hug: I truly hope so. I’d love my tribe to meet Gail’s and I’d really, really like Eileidh to be reunited with the LFN flag before she heads Stateside: there’s a certain poignant relevance about meeting the Princess again on her departure to the States.

As our two weeks draw to a close, I can’t help but reflect on the opportunities that we’ve had to spread the word about neuroblastoma, and how folk have responded to the message. On only our second day Stateside, I met two officers of the NYPD, Brad and Bo, in a burger joint and later that day, Brad’s sister was also became part of our group. Then on Sunday past, while we were sealing several deals in the North Face store at King Of Prussia (more of that later), I got talking to James, one of the store assistants. James played college football alongside Devon Still, currently with the Cincinnati Bengals NFL team. Devon is a big name in the US, not just because he’s an American Football star, but because his five year old daughter Leah has been battling neuroblastoma for the past twelve months. How does that work: the world is such a small, joined up place at times…

Talking of small worlds, this story is utterly surreal. I was watching the women’s World Cup sem eye final (because that’s how they pronounce it over here) and I was having a rant experience on Twitter about the US commentary when I got into a friendly exchange with a couple of folk. One was Jackie Barreau from Adelaide which caught my attention for obvious reasons if you’re a regular reader of my stuff. There then ensued a couple of introductory tweets after Jackie followed me five minutes later and it transpires that she lost her son to neuroblastoma when he was just two. Jackie also has a blog at http://www.lovehopeandcourage/wordpress.com so now I have a soulmate in words. Please take a few minutes to take a look. Oh, and another thing: Jackie has met Jimmy Harrington. I’m in awe.

So the LFN challenge is embryonically alive and well in New York City and Philadelphia. But you need to add Los Angeles to complete the set for Tiff, lead singer and song writer with Fire Tiger, is now also part of the LFN family. Tiff, when you read this, I challenge you to come up with a new song “Princess And Warrior” about a girl who fights against the odds and comes out the other side: one for your second album. And when the band eventually conquer the UK, we’ll all be there to see you deliver it.

One of the interesting things I’ve learned on this trip is “Airplane Mode + WiFi = continued connectivity without roaming charges”. I’d kind of assumed before we came out here that I’d have to take a local SIM with data or park my phone for two weeks so you can imagine my surprise when the boys reported that as long as you leave your phone on airplane mode the whole time but leave WiFi on, the only things you’ll be missing are texting and calls. Result? I use instant messaging more than text messaging anyway, and I’ve had no PPI calls for a fortnight. Get in there! Gail take note.

So back, briefly, to the King Of Prussia story: between 1977 and 1987, I worked for Burroughs, the computer company who merged with Sperry to form Unisys. Legend has it that the interest on the loan from the bank that brokered that deal was paid for by the closure of our factory in Cumbernauld. But back in the early 80’s, I was lucky enough to be working on projects that got me trips to World Headquarters in Detroit (who mentioned Motown?) and Downingtown, Pennsylvania. King Of Prussia is just off route 76 to Philadelphia and home to the biggest shopping mall I’ve ever been in: and I wanted my tribe to experience it 35 years on. Quite apart from the T-Shirts that the boys are going back with, that will set them apart in their peer groups, we kickstarted the day in a sports shop that is easily twice the size of the 24 hour Tesco at Silverburn. I am not exaggerating when I say that we split up to look at stuff then took half an hour to re-find each other. Nothing’s really changed at King Of Prussia, except it’s even bigger than I remember it. The boys were totally made up.

Next week, of course, it’s back to normal and the 5am routine. Monday is going to be really tough. As if the five hour time difference between New Jersey and Glasgow wasn’t enough, you can add the wee daft dawn hours on top of that. It’s just as well that I’ve been waking and messing about on my phone from first light while I’ve been over here.

I’m going back on the road armed with an attitude that says “it’s only 9,000 miles”: ignore the odd numbers because it’s under 10K. Only now is it hitting home how important it was to smash that barrier before we came away. Yeah sure, 9,000 miles is still a long way but everything is on my side: fitness, motivation, wellbeing and most of all time. Against the target I originally set myself, I have 32 months to complete the remaining miles. But if I have my way, it will be done in eleven: as I said at the outset back in 2013, kids with neuroblastoma don’t have the luxury of days off when they feel like it and I have no intention of starting that caper at this (late) stage. It’s not quite the home straight yet but I’m certainly motoring down the back straight.

My next official target, again self-imposed, is 15,999 miles by Friday 24th July. The reason is because the NCCA Family Fun Day is on the 25th in Richmond and I’ve every intention of being there to ride the remaining ceremonial mile. To pull it off, I need 711 miles in 15 cycling days, which works out at a daily average of 47ish. And as the final Friday of that set will have a three o’clock train to London thrown in, extra miles will be at a premium. 4:30am start anyone? Talk about no rest for the wicked!

So what have been the highlights of this trip? Moving location every couple of days has made it seem like an eternal holiday but the memories fall into two categories: the sights ‘n experiences and the emotional stuff. That allows me to separate NYC, Philly and the Atlantic City coast from the visit to Solving Kids Cancer and the news that Eiliedh is finally on her way: and that, finally, is one of the things I will remember most about this holiday because Princess Puddles got the Green Light and Team Puddles are finally on their way…

Fire Tiger

I’m not quite sure how this will work out because I’ve never written the blog entirely on my phone before. But two things happened this week that made me sit up and take notice: the release of the mobile version of Microsoft Office was one; and Tiffany Alkouri, lead singer with LA pop rock band Fire Tiger was the other.

But first let’s bring the story of a week with no miles right up to date… We’ve been in NYC and New Jersey all week on holiday. The flag has been out and about, most notably at the Statue of Liberty, which was quite apt really because kids deserve to be free of cancer and able to grow up strong and well. Then there was the Brookyln Bridge and Time Square: the Parlour, an Irish bar up on 86th St next to Central Park where Jak, an exile from Glasgow, has pumped a fistful of dollars into LFN in the time that I’ve been on the road. But we’re still waiting to hook up: missed each other on Sunday. Then there was the beach down at Atlantic City where the sun sizzled up the high 80’s and the tan got a tanning.

But despite all the sightseeing and the razamatazz of the American dream, the most poignant event of the week happened on Tuesday at number one, East 53rd St. I’d parked the family in a coffee joint at the junction of 51st and Madison (for no reason other than it had WiFi, a teenage necessity these days it seems). Then I walked two blocks round the corner and in off the street at East 53rd, took the elevator up to the 5th floor and wandered into the Manhattan home of Solving Kids Cancer. SKC is the US mirror image of the NCCA. Run by families for the families, they carry out exactly the same kind of fundraising and support work as their UK counterparts. And I just wanted to stop by and say hello: this is all part of the learning experience for me as an outsider. I was greeted most kindly by the staff, and in particular by Scott, the main man. As Scott told me his story of how it all began, I thought of Stephen and Leona and got an insight into what it was that made Leona make the brave decision to give up a successful career in software to become a neuroblastoma campaigner on behalf of others who’d been similarly affected. After a long chat which resulted in me fetching the family lest they thought I’d been taken by aliens, Scott sent me on my way with a book: the email diaries of Syd Birrell about the daily fight against neuroblastoma staged by his son James back in the early days of the 21st century.

A remarkable family from Canada, the Birrells morphed into a unit that packed every last ounce of energy into living today like there might be no tomorrow. And sadly, 26 months after heading out down that road, there wasn’t: wee James passed away. I pondered the first 50 pages on the beach yesterday, and already I have a better understanding of the physical and emotional trauma that families must experience when neuroblastoma strikes, not once but twice, for the second time is invariably fatal.

One of the things that drives me on, particularly when the fundraising isn’t going well, is to just keep trying to get the message out there. Neuroblastoma is as bad as it gets in kids’ cancer so every new person who I can touch is a person made aware: or so I kid myself (see what I did there?). But the more I get into it, the more I feel at home with the people who Taz Glad would call “my bubble”. So it was with a very glad heart that I picked up a news story this morning from Leona, who herself is in the States on neuroblastoma business, that Coronation Street is planning to run a story about a five year child who gets diagnosed with the disease. I haven’t watched Corrie since the days of Ena Sharples, Minnie Caldwell, Else Tanner and Len Fairclough, but I might well watch this. In terms of awareness in the UK, this is a game changer.

It’s pretty well documented how much I love Social Media and how I use it to get the message out there about kids with cancer. I know I don’t actually need to be doing any of this because my family isn’t affected but that cuts no ice with me. Because I’ve been blessed with the drive, motivation and energy to do this, the challenge knows no end.

Energy…

That brings me to wee Princess Puddles, a rock concert that will blow the roof off the Ironworks in Inverness in a few hours time in support of her, and an upcoming LA band called Fire Tiger.

I’m not quite sure how this happened, so maybe Tiff will explain in due course, but I got a Twitter follow midweek from @FireTiger_Tiff, lead singer and the driving force behind the band. I’m always fascinated by random follows. How does someone in LA get to find out about an eccentric dude on a bike 10,000 miles away, let alone jump on the story? It’s why I love Social Media. Does she know that having been in YouTube and had a look at their stuff, that I love it? Does she know that when I press ‘Send’ on this story that her band will reach a whole new audience across the globe? Does she know that if there’s the remotest link to anything British in the band, JJ will surely plug their material in Adelaide? She will shortly.

For Fire Tiger, think Roxette. Think Duran Duran. Think Belinda Carlise out front. Think Spagna. Think big, hard driving early 80’s pop rock given a modern day facelift.

Think Kim Wilde. Think “Kids In America“. Definitely think “Kids In America“.

For if and when Gail and her family eventually board that plane to Michigan for Princess Puddles to receive the treatment she so desperately needs to become Tiff in twenty years time, I will sit back and wonder just how it came to be that this song, written and performed by Tiff Alkouri and the Fire Tiger band, came to land on my timeline two days before the Ironworks and A Song For Eileidh. It’s remarkable. But then this adventure has been that way pretty much since the start.

#Energy

Puddlemania

There’s really only one show in town tonight (and for the next week): Puddlemania.

As recently as the beginning of April, Princess Puddles’ appeal was sitting at £14K, a far cry from the £100K that Gail required to get Eileidh to the States for potentially life saving DFMO treatment to prevent her neuroblastoma from coming back. But here we are, ten weeks on and the people of Scotland have done Gail and Eileidh proud: the fund now stands at £110K and only one obstacle stands between the Princess and the big plane. But it’s a big one: Eileidh needs to be cancer free before she can go and she’s currently undergoing day after day of rigorous tests to find out if that’s finally the case. Princess, we are all with you…

An event I would urge you all to get along to is at the Ironworks in Inverness next Friday night: Song For Eileidh is a rock concert to raise funds for the Eileidh Appeal and it’s all the work of Bronwen Roberts, Kathleen Roberts and Gail Paterson. There are a host of Highland Indie bands on the line-up and it promises to be a fabulous night. Don’t miss out!

They say that hindsight is a wonderful thing. It was way back before Christmas that Neil at Fast Rider Cycles said to me, on one of the many occasions that he had my months old touring bike in for repair “you need to get yersel’ a lightweight road bike”. I remember thinking at the time “yes, but I only got this bike in March so I can hardly justify another new bike”. How wrong I was. The stats tell the story.

Between the start of April 2014 and the end of this same week, I clocked up 2308 miles at an average of 41 for each day that I cycled: that was on my Dawes tourer. Between the start of April 2015 and today, and remember that I’d only been back on the bike for ten days when April came around, the corresponding total sits at 2642 at a daily average of 48.

Seven miles a day further, for each of 55 days, during a period when I started off a stone overweight and puffing like an old steam engine. I had no idea three months ago that the Trek Domane road bike, which weighs in at only 21lb, would make such a difference. I’m not getting up any earlier. I’m not getting home any later. It’s just that I’m able to translate that 21lb into miles in a way that I never thought possible at my age (which is somewhat surprising as I rode a Flying Scot for twenty thousand miles in the 90’s).

So how did it happen?

Well it’s worth recalling that I started out on #LFN on a folding mountain bike. That did me for the first thousand miles (at 30 a day) until the winter of 13/14 when I jumped onto my mountain bike as it suited the winter conditions better. But the MTB was old and clunky and after I’d had various new bits added (new back wheel and new disc brakes for starters), I came to the conclusion that it wasn’t going to carry me for 25,000 miles. It carried me for 3,000 miles at 35 a day. So that justified the touring bike in the spring of 2014: “comfort” thought I, I need comfort for the long run. Oh, it delivered comfort alright, but at a cost of 32lb and going up hills, you really notice it. #LFN delivers a minimum of 2,000ft of climbing every day so that 32lb of equipment weighs heavily on your legs when you’re climbing or fighting a gale. By comparison, 21lb is featherlight.

So how does the difference translate into miles? Simple: it’s speed for no extra effort.

The first four miles in the morning carries the burden of a 500ft climb (separated out into six wee climbs), albeit that in the main the wind is either across or off the right shoulder. Then for the next twelve miles, across the Fenwick Muir, the Trek is like a feather on the breeze. Yeah, I have to work some days, but in the main it’s a massive clog that you just get caught up in. Floak is the high point, by which time the ascent has climbed beyond 700ft (see what I did there?) before a long steady descent down through Newton Mearns delivers me into Giffnock at around 6:30am. In the old days, Giffnock was 6:40 to 45 so armed with these extra minutes, I turn them into miles. I’ve got into the habit of chucking a loop of Pollok Park into my route into work, even though it’s not actually on the direct route. I love the park because there’s zero traffic, the occasional jogger, a dawn chorus, squirrels scavenging about and even fallen trees (last October’s wee incident). Throw in a fast, flat loop of Shawlands on empty streets and 26 or 27 miles has become commonplace. A year ago it was 21 or 22.

The return run is unfortunately payback time. Whereas the heavy bike provides stability into the prevailing wind, the Domane gets chucked about like a wee leaf. It’s both challenging and existential. Just get the bike home is always the motto. But overall , the 41’s and 42’s of a year ago have suddenly translated into 46’s, 47’s and 48’s today. 200 a week back then has become 240 now. It’s a hell of a difference and it’s eating up the road at a rate of knots. But it has come at a cost: the new bike is only three months old and already it’s back in the bike hospital, having worn out chain number one. Three thousand miles is seemingly all you get these days. Whatever the fact, it’s better to err on the side of safety and change it now rather than risk a mechanical failure up on the Muir.

There was a time last summer when I saw the opportunity to complete #LFN in three years instead of four, only for my hernia operation to rob me of nine weeks and put the end date well into Q1 of the fourth year: not any more. Progress has accelerated to such an extent that completion by this time next year looks almost certain so long as the snow and ice do me a favour this coming winter. It starting to look like June 2016 could be spent back on the bus…

I’ve been thinking quite a bit this week about how this journey will actually end, because it seems a bit limp to just ride into work one day and declare “well, that’s me done 25,000 so that’s it”. I want the finale to have a wee bit more pzazz than that…

So you won’t be surprised to learn that I’m thinking of bowing out with a bit of a bang, a 24 hour non-stop ride. One that fits the bill for all the right reasons is Belfast to Forres (apart from the bit where you have to get the ferry from Larne to Troon). It’ll be branded as #OscarToEileidh. By why 250 miles for Gord’s sake? Because it’s difficult, that’s why. I don’t know whether I can do it but I sure as hell intend to give it my best shot. Just like Princess Puddles these last twelve months.

Door to door it’s close to 250 miles, which would be a personal record, eclipsing the 237 that I clocked when I cycled from Manchester to Glasgow for Action Research in 1994. The route is also special because whilst it has Oscar at one end and Eileidh at the other end, Vanessa, Alfie and McKenzie lie in between. It feels like an A-Z route of kids who’ve battled neuroblastoma around the time that I’ve been on the road and it’s my chance to have one final blast that says “kids, I did this for you”. Doing it south to north maximises the chance of picking up a favourable prevailing south westerly tailwind, and that in turn will make the difference between a 10mph average and a 12mph average which translates into a difference of four hours on the road.

When? Probably end of May next year, but that very much depends on what kind of winter we have and how inhospitable the Fenwick Muir decides to make itself.

And the more I think about it, the more I realise that it would be a fitting finale because when I set out, I knew nothing of the difficulties that lay ahead, just as Gail knew nothing back in August 2013, when I started out, of how her life would be turned upside down by the journey that lay ahead.

Live for today, plan for tomorrow and celebrate Puddlemania.