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 <em>finally</em> 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 25<sup>th</sup> 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 15,000<sup>th</sup> 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 “<em>it doesn’t matter that my legs are tired, this is about the result</em>”.
Well, here’s the
<li>The most miles in a single working day (today): 65</li>
<li>The most miles in a single working week: 259</li>
<li>The highest number of least miles in a single working week: 48</li>
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 <em>stuff</em>. 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 <em>nice</em> people say yes. Well here are a couple of <em>nice</em> 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 <em>nice</em> 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 <a href=”https://lovehopeandcourage.wordpress.com/helpful-links/”>https://lovehopeandcourage.wordpress.com/helpful-links/</a>
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.