When September Ends

October is breast cancer awareness month: the colour is pink. Gold was yesterday…

Apparently because the clock has ticked on from September 30th, we’ve to put our banners away, put all our gold ribbons back in the cupboard and wait another eleven months before we dare talk about children’s cancer again. It’s a taboo subject.

Aye right.

There’s no way I can compartmentalise my brain into thinking that I only give some welly once a year. My body tells me every single working day that I’m giving it welly. LifeCycleForNeuroblastoma is my other life outside of work and the family. It’s with me 24×7 every week of the year. Even on the days that I’m not riding, I’m acutely aware how many hours it is before I’m back on the road and fuel is constantly on my mind. I never stop eating because the one time I get it wrong I’ll pay for it.

I read an article today that Jackie Barreau sent me: http://austin.citymomsblog.com/2015/09/30/raising-golden-child-8-things-know-parents-childhood-cancer-warriors/?utm_campaign=shareaholic&utm_medium=twitter&utm_source=socialnetwork

If you haven’t read it, then you should. One day, you will find yourself in a situation where this article is your reference guide. The article is called 8 Things You Should Know About Parents Of Childhood Cancer Warriors. After I’d read it, I started thinking about all of the people I know who’ve been in that place. Some, such as the folk I met for the first (and only) time at the NCCA/SKC Fun Day at Richmond in July, I barely know because I was only in their company for a few minutes. But there are others I know a wee bit more  because we’ve met a couple of times: and beer’s a great leveller. What they all share is a compassionate spirit coupled with the ability to persevere and hold it all together through the most difficult of circumstances. I’ve said it before in a previous blog but I cannot comprehend what parents go through: it’s the bit where you have to stand back and allow your child to be subjected to extremes of pain and intervention that does my head in. I know how it is to subject myself to pain, day in and day out, but that’s not a scratch on the surface of the real thing. The article screams in its headline that children are cancer warriors: and believe me they are. Except that I don’t really know because I’m an outsider.

But consider for a moment those 8 things that you should know about the parents of the warriors:

  • You do not know what I am feeling
  • Please do not attack me
  • Yes, I have heard your miracle cure
  • Never ask “what is the prognosis”
  • I am not as strong as you think
  • Please do not feel sorry for me
  • We are not privileged
  • We are still human

Some of them have parallels in #LCFN but I wouldn’t dare to suggest, not even for a minute, that the two are comparable. They are not. I will settle for similarities:

  • You do not know how tired I am feeling
  • Please do not suggest that I am wasting my time
  • Never ask “will you carry on once you reach 25,000 miles”
  • I’m only as strong as I feel today
  • I’m not privileged, just fit enough to give it a go
  • At the end of the day, I’m just a bloke on a bike

I will expand on them as best I can…

You do not know how tired I am feeling. This is possibly the hardest one for me to come to terms with. I dread the 5am starts, yet I love getting off the bike at 7am having worked hard for two hours. It’s basically a paradox. I cannot have one without the other. Four hours in the saddle every day (five on Fridays) has the potential to leave me really, really drained: and sometimes it does. In the early days, when I was still getting used to the workload, I used to struggle a bit in the mornings at work, but now it’s fine. Now it’s the evenings that clobber me. I do wonder how on earth I manage to get through the week sometimes: but then I just push harder and it makes it easier the next time. Does that make sense?

Please do not suggest that I am wasting my time. This one keeps coming up, and I’m never ready for it. The first time was when someone in my work asked me (about a year ago) how much money I’d raised and I said “about sixteen hundred pounds”. “That’s not much” is it? I could have chucked it there and then, except that once I sign up for something, I’m in it till the end. But you see how that stuff hurts. It’s like “why are you wasting your time when that’s all you’ve raised”. Excuse me, but I’m a one man band: I ride my bike, I write my blog, I keep the Facebook page ticking over and I get tired. At the end of the day, it’s all I can do. And it’s better than doing nothing…

Never ask “will you carry on once you reach 25,000 miles”. Don’t ask because I can’t give you a straight answer. Right now, all I want is to be finished and put my bum on a bus seat the very next day. But the flag does say that I have four years to do it in and two of those four years will be virtually untouched by the time I reach 25,000. Right now, I just want a rest.

I am only as strong as I feel today. If I could have had a pound for every time I’ve felt like this, I’d have enough money to buy another new bike. What I’ve learned is that you take every day as it comes. The problem arises when there’s a goal to be met, such as the #GoingForGold 1000 miles in September. Then, even if you’re not feeling strong, you’ve still got to go out there and deliver way above the norm and that creates pressure that strangles the very freedom that you need to perform at your best. It’s a self fulfilling prophecy.

I’m not privileged, just fit enough to give it a go. People think I’m some kind of superman: I’m not. I’m just a guy who’s done sport virtually all his adult life, with the result that I’m lucky enough to still be fit enough to throw myself into something like this. Where perhaps I’m different is that I possess the sheer bloody mindedness to see it through till the end. But that’s not a privilege: that’s just me refusing to give up. Some might call it being stubborn…

At the end of the day, I’m just a bloke on a bike. The bloke bit is very important to me. I like beer, I like wine and I like food. I can get away with eating virtually anything I want as I’m burning 2000 calories a day on the road and as long as I don’t go overboard with the ale too close to an #LCFN gig, that weaves its way into the equation okay too. I guess the only difference between me and the next bloke is that my tiredness equates to his slothfulness which leaves both of us tired at the same time but for entirely different reasons.

As a kind of grand finale to Childhood Cancer Awareness Month, I raided the Green Day classic When September Ends yesterday and put a #LCFN spin on it. Here it is in all its glory: just hum the tune as you work your way through the lyrics:

Summer has been and passed

This dry spell can never last

Wake me up when September ends

5am alarm has gone, alas

Seven hours have gone so fast

Wake me up when September ends

 

Here comes the rain again

Falling from the stars

Feeling children’s pain again

Becoming who we are

 

As my memory rests

Never forgetting what it costs

Wake me up when September ends

 

Summer has been and passed

This dry spell can never last

Wake me up when September ends

 

Bring out the wellies again

Like we did when Spring began

Wake me up when September ends

 

Here comes the rain again

Falling from the stars

Feeling children’s pain again

Becoming who we are

 

As my memory rests

Never forgetting what it costs

Wake me up when September ends

 

Summer has come and passed

This dry spell can never last

Wake me up when September ends

 

5am alarm has gone, alas

Seven hours have gone so fast

Wake me up when September ends

Pink may indeed be the new Gold, for one month only, but I will remain Gold until my job is done: and that’s still 6,700 miles away. We may be into October, but every day on #LCFN is really about

When September Ends