GIST Support UK describe themselves as the club no-one wants to join. They’re right. One of the hardest things with such a rare form of cancer is the feeling of being alone. GIST Support UK does a great job of joining people together in similar situations, but you still have moments feeling solitary and isolated.
Over the last month with the campaign to reinstate Regorafenib I have been amazed and humbled by the support of everyone, friends and strangers. My tweets, posts and messages cannot ever truly pass on my gratitude to everyone involved and everyone who has signed the petition. I know I am not alone and I cannot stress enough that this campaign will affect other people if we can get the decision reversed. These are young people: Mums, Dads, Sisters and Brothers, and we are all battling GIST, we shouldn’t also be battling the NHS Cancer Drug Fund for precious extra quality time with our families. As you will have read in the local press, all I want is to see my two daughters grow up.
Last week I received an email from a mum of two, whose husband has been fighting GIST for the last four-and-a-half years. Sam Waller is from a nearby town, East Grinstead in Sussex. He has two boys, Joseph and Henry, and I am delighted that we are combining our efforts to maximise the exposure of this campaign. Other GISTers, as we call ourselves, are also doing their bit on social media, look out for the #100000voices on Twitter and Facebook and be sure to interact with it, it really does help.
If you would like to find out more about Sam please read the older press release on this site by clicking here.
Follow his wife @WallerMich on Twitter here.
Here’s a plea from one of Sam’s friends on Facebook, it’s worth a watch: