I was about 1000 signatures late before I discovered that an epetition had been set up by the girlfriend of a fellow GIST Sufferer. My campaign journey began on the 11th February with an interview on BBC South Today. Good, close friends rallied around me setting up fund-raising pages and spreading the word on Social Media. This was a strange time. While I never kept my cancer a secret, I’m not the sort of person to make it a topic of conversation at the school gate! All of a sudden though, people were talking. If I’m honest, this took a bit of getting used to, especially as I still do not want my children to know the severity of the situation.
Soon after my South Today interview, friends and strangers created this website – my little corner and online home. Like I say on my homepage, I didn’t think I’d ever need a website, but then I didn’t think I’d ever need to find 100,000 people to campaign for a last-resort drug to treat my cancer either. But here it is, a hub for the campaign and all involved. Early on, I was only thinking that we might get to 10,000 signatures in the time we had available.
Things started gathering pace when I hit the headlines in print and made my debut on the radio. The momentum continued to build as I met a number of other GISTers at TMW Unlimited for a photo shoot. The resulting images are brilliant and can be seen on the Gallery page under ‘TMW’. Armed with these, and other banners of my own, we hit social media, and we hit it hard… I’ve never really been on Twitter but I’ve had to learn it quickly as I’ve been getting as many mentions as some celebrities. We have certainly had our fair share of celebrity support on Twitter. Irvine Welsh was one of my early champions and he really added kudos to what we were saying with his quote “It’s obscene beyond expression how people can have the arrogance to put a price on young lives.” He was later joined by a long list of celebrities,each sharing the campaign among their thousands of supporters. With other ‘GISTers’ doing the same the signatures on the petition really started to climb.
Then Michelle Waller contacted me via the website. Her husband Sam has GIST and is in a similar position. We gave them both a home on the site, so that they had somewhere to direct traffic and media interest. They are another Sussex family who have added massively to the campaign’s awareness, and with their help on social media the signatures continued to grow. They too hit the papers, radio and television.
Among those sharing the campaign with their own followers and supporters were Russell Brand, Leigh Francis, Joan Collins, Carlton Palmer, Ian Royce, Boy George, Omid Djalili, Larry Lamb, Paddy McGuinness, Vernon Kay, Ian Rankin, Arrested Development, Ruby Turner, Edwyn Collins, Dawn French, Les Dennis, Bobby Ball, Matthew Wright, Eddi Reader, Chesney Hawkes, Davina McCall, Carlton Palmer, Matt Le Tissier and Zoe Ball to name just some.
Michelle, Sam and I met up for the first time at a dance event to raise awareness for the campaign, I’ve been meaning to write a blog about it ever since but have never quite got round to it as things got very busy very quickly. I might still if things calm down! It was a great evening – everyone enjoyed themselves and, whilst the story behind why we were dancing is a far from happy one, the atmosphere on the evening was poignant but positive and struck the perfect balance. Plus it was wonderful for us all to finally get together too.
I also learned about Laura Todd’s story, and she joined this online hub of people with rare cancer that will be affected by the removal of regorafenib from the Cancer Drugs Fund. Being a young Yorkshire mum she managed to help the campaign reach an entirely new demographic.
So here we are with the staggering support of #100000voices. Sadly that is not the end, just the first chapter in the campaign. We still do not know what the future holds but with an overwhelming 100,000 people on the side of us ‘GISTers’, I am determined to get the drug reinstated for us all. We all know it should be. Even the GIST expert, Dr Ramesh Balusi, said it needed to be – not only to allow us to spend valuable time with our loved ones, but also to buy us a window of opportunity that may enable a cure to be found.
I will continue to keep you updated here, but from a humble mum of two from Sussex, thank you. Words can never actually express the incredible gratitude I feel towards everyone who has signed, supported or shared this campaign. It really is beyond words, so thank you will have to do.