Story
I'll be riding 112 miles through the Lake District on Sunday 10 May to raise money for GIST Support UK. The ride is classed as the toughest sportive in the UK, as it takes in all the Lakeland passes, including Hardknott pass at the 98 mile mark - the steepest road in England, with 30% stretches!
Why? Because this incurable disease has affected a friend and her family, at way too young an age. Vicky tells her story in her own words below, and you can also hear her talk about the condition on the following BBC interview:
http://www.bbc.co.uk/programmes/p02qddp7So it all began on Christmas Eve 2007, when I awoke in the high dependency unit of Dorchester Hospital after an ulcer, caused by a tumour in my stomach, ruptured. Luckily for me, the consultant on duty was a stomach specialist - I nearly didn't make it. So rather a disruptive Christmas for Adam & the boys (Inigo was aged 4 and Hector 21 months) and the poor Lancasters who we were visiting!
6 weeks later I learnt that I had a very rare cancer called a Wild type GIST (Gastro Intestinal Stroma Tumour). Not only is it rare but there are no known cures. So for 4 years I was monitored at The Christie in Manchester. But then in November 2011, I learnt that the cancer had returned in my Liver - 15 little beasts. There are a couple of drugs that can stabilise the tumours but the first didn't work for me and the second Sutent is slowing the growth rate but not stopping it and recently it appears that it is having less effect as the growth rate has increased.
Currently, my illness does not have a massive impact on me - psychologically, I quickly learnt to accept my diagnosis and get on with living my life - amazing how on a sunny day the sky seems bluer and the flowers brighter! I work 4 days a week and lead a pretty normal life but I do suffer from side effects, including extreme fatigue and sores on my feet; I've also been advised to only have 1 glass of wine a week - can you imagine! I must say that I have the greatest admiration for any alcoholic who has managed to stop drinking - it's so difficult in social situations when you don't want people to know why you're not drinking.But the impact is hard on the family, although my husband Adam is very supportive and Inigo and Hector are amazing in the way they deal with it!
So why am I now revealing this to you. Well Wild type Gist predominately affects young women- they think my original tumour started in my 20s but lay undiscovered until I was 35. The PAWS-GIST group was set up by some mothers, whose young daughters had received this devastating diagnosis and they then learnt that there was very little research into this extremely rare cancer (there are only about 30 cases diagnosed in the UK each year). They aim to pool expertise and fund research with the aim of eventually finding a cure. So fundraising for this is essential.Last March, I was very lucky to be invited to the first specialised clinic in Cambridge at the Addenbrooke's hospital, funded by the PAWS-GIST group and had the opportunity to meet others with this rare diagnosis. This is one of my drivers to raise funds, to help find a cure for those who have the misfortune to be diagnosed with this cancer before their lives have barely started.
All money raised will be for PAWS-GIST and will be used to fund a further 2 clinics and research into finding better treatments, access to drug trials and eventually a cure. They are looking to raise £250,000 - a mammoth task.
I know it's hard these days with so many requests for sponsorship and fundraising and of course there are so many other worthy causes. But hopefully, after reading my story, you'll understand why I am asking you to support this cause.
Please do share this story for two reasons: so that anyone who has received this rare diagnosis knows there is support out there for them and to ask other's to help support this cause.
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