Before I move onto the Arch to Arc ride I thought I’d report on my time at the KCA patient day a couple of weeks ago in London. It was a long but interesting day covering a varied set of topics ranging from the very scientific to the practicalities of dealing day to day with the side effects of treatments.
I did take some notes on the day but to be honest looking back on them they’re probably of little value to anyone. Anything that helps raise awareness is always a good thing. What it did highlight to me (and I dont mean this to sound bad) is that most of the questions were directed at the nurses who were able to provide really good practical advice to patients about the control of side effects and the various treatment options.
There was one area they touched upon and that was patient appeals for drugs not approved by NICE and I wanted to bring readers attention to that. Please dont feel you’re alone with this; Rose Woodward and Julia Black are always available to help you wade through this. If you want to contact either of them then go via the James Whale Fund forum (Kidney Cancer Support Network). Appeals can be very fraught, so realise there is help out there.
Anyway, onto the Arch to Arc. We’re down to the last few weeks before we set off and I’m getting really twitchy and excited by it. Myself, Nikki and Sarah from the fund are off on a jaunt to Paris next weekend after the riders get together in Cambridge on Saturday. Why are we doing this? Well, we want to check the route one more time (by car) so everyone is comfortable that we know where we’re going and where the best stop off points are along the route. Yes I cycled it a month back but I have to admit that it was hard work and I wasn’t as able to take as many notes as I’d hoped.
What we want to do is break the route out into 20 mile’ish chunks so we all get regular breaks which is pretty much what you’d expect on an organised ride of any sort. We want it to be a fun run, not a race!
I know lots of the team are starting to do really long rides (75 Miles+). I’m so pleased that we’re all out there training, it at least means we know what we’re in for. I get the odd message from Sally, Sam, Trevor and Jeanie telling me of their exploits (which is spurring me on to do more training). Some of them have been doing these things called “Sportives” which seem to be events organised by local cycle clubs that can give you a 50 – 100Mile organised run, you may want to check them out, here’s the link.
I had a great ride this weekend called the Hyde900 (Wantage to Winchester) with Ptol (another of the riders). It was about 53 Miles through rolling countryside. I’m for sure going to do that one again next year as it was so much better than the London to Brighton.
However here’s a lesson for all us riders. Please, please make sure your bike has had a good service through a reputable bike shop before you embark on this. I had mine serviced just before I went to Paris last time and it’s already worn out. I need new front cogs, a new crank shaft, new headset bearings and pedals (some of it was in a pretty dangerous state). I took it in by chance today to get a “granny” gear fitted only to find that was the least of my problems.
If you’re like me you just get on the bike and ride it, I’m not much for servicing it myself or doing general maintenance, ergo it gradually starts wearing out without me knowing it. So dont forget, get somebody to give your cycle a quick look over, dont rely wholly on your own judgment no matter how experienced you are.
Good news as ever!! We’ve collectively hit over 90% of the £20,000 target and the money keeps on coming in. This money is going to really help, and I think for the first year it’s an amazing effort. Special Thanks has to goto Sally Hewitt who has raised over 1/4 of the money so far … go team Sally!!
So, we’re onto next year then … who’s up for it? We’re starting to take names, our target is 50 people to raise £50,000. It’s an ambitious target but you have to have ambition, right? If you want to sign up then the details can be found on either facebook or at the James Whale Fund web-site. Pass the word round to those who wanted to do it this year or who expressed an interest. If you’re cycling in these Sportive type events then pass it along to those you meet on the way.
Keep on pedalling and hope to see most of you this Saturday, if not then see you at the Arch!
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Posted under Arch To Arc 2010, Arch To Arc 2011
This post was written by AndyThomas on May 17, 2010