That Was a Long Weekend….

I’d forgotten just how geeky and nerdy I can get. I’m a bit like a dog with a bone when it comes to computers. It’s not that I’m any great whizz kid at them I think it’s just that I can’t stand to let them beat me. That’s how it felt this weekend getting this blog site up and running…. boy did I learn a lot, and thanks to Rose for all the input and ideas. Not content with doing that I also stupidly upgraded the WIKI software on the Kidney Cancer Resource site as well on Friday night, one day I’ll learn. I think my wife’s still speaking to me … not sure, I’ll have to test the water later. Wish me luck!!

Anyway, I hope it adds value to our Kidney Cancer community, and feedback is always welcome. I can’t promise to fix everything but I’ll do my best as and when I get a spare few mins.

I’ve been so heartened over the last few weeks as we led up to the demonstration on the 27th August to see how everyone has pulled together to make things happen. It just takes one spark from someone like Clive Stone and it all seems to have snowballed. I think that’s what really spurred me into action to create a communal blog space, I’d been thinking about it before because of the feedback I’d been getting on the Kidney Cancer Resource, but to be honest I’d put it to one side.

I was also amazed by the crew over in the US on the ACOR list, they really helped push the message on NICE as well by writing en-mass. Not sure why I was amazed, I shouldn’t have been because I know that community is so strong. I’ve added Manuel Lopez’s blog (“Our Life With Kidney Cancer”) to the blogroll on the left hand menu bar, some of you may want to read his diary, and he was key in helping push the message in the US. As and when we come across related blogs I’ll add them in, just let me know.

Let’s hope we can keep going to get these cruel people at NICE to change their minds, and lets also hope and pray that the PCTs start changing their attitude to exceptional circumstances, I think it’s appalling that they seem to be closing ranks.

I know Clive has some ideas brewing, and for those who haven’t already see it, check out his latest call to arms:

NICE PROTEST – KEEPING UP MOMENTUM

First of all a big thank you to all who came to London on 27th August. I am aware that many of you had travelled long distances at some considerable cost to yourselves and it was greatly appreciated. It was particularly good to meet so many new friends, and to have the valued support of those of you who are already taking Sutent.

It was a great turnout and a very special occasion, and demonstrated to all just how determined to get this cruel NICE decision reversed.

We had terrific media coverage and their interest in our cause continues as they still have an appetite for more. They have been pressing me for news of our next event as they have identified that we have touched a nerve with the great British public.

I am resolved to fight this until we win, and I am asking you all to please join me again as we must now regroup and consider our next little trip to London which must be even more remarkable than the first!

1. We now need to quickly build a database of supporters for future events. Therefore, if you want to become involved can I please ask you to contact Jan at: janstone50@hotmail.com with your name and contact details so that we may contact people.

2. The James Whale Fund have agreed to put on their website, (www.jameswhalefund.org), our t-shirt “front” and “back” logos. I would suggest that you then buy plain white t-shirts and have the design printed locally. This would then avoid having to distribute campaign material, as we are just not set up for this.

3. We could also consider wearing our t-shirts on the same day each week, say on a Saturday, as we go about our normal daily routines. This would gradually become noticed, and increase awareness all around the country.

WE ALL DESERVE THE RIGHT TO LIFE!
Clive Stone
Justice for Kidney Cancer Patients

Hopefully the next event will be the one that tips them over the edge and forces them to do the right thing.

Right, I’m off to bed!

Posted under Andy Thomas, General, Oxford Support Group Demonstration 27-Aug-08

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