Next Challenge: Adam and Oscar are taking part in the Manchester Great Run, entering the 10k race, on Sunday 19 May 2019. As you will see from this picture, Adam has shed an incredible two and a half stone, partly through training for this event. My situation is that 4 years on, I’m still on Regorafenib but it’s starting to be less effective. Future treatment options are unknown so research continues to be essential. The Gist Support page details updates on current research. Thanks all for your continued support.
Vicky & Adam Rockingham, Anthony Lawton & Glyn Lyndon abseiled Spinaaker Tower in Portsmouth on 6 May 2018 to raise money for PAWS-Gist. I’m still on Regorafenib which NICE approved in November following my attendance at their appraisal as an expert patient in June. However, there are no further treatment options for me once Regorafenib stops working. PAWS -Gist Cancer are looking to fund trials specifically for my type of Gist but funding is needed. I’m not particularly keen on heights so this will be a huge challenge for me.
William Shirt aged 14 decided to shave his hair off to raise more money for PAWS-GIST and to raise awareness. Will has already been a big part of my fundraising by climbing Snowdon with us and participating in last year's cycle ride. But it takes some guts to shave your head at aged 14! So big thanks to Will, his brave parents Becky & David & brother Matthew for carrying out the shaving & to all Will's fantastic family & friends for sponsoring him. Also special thanks to The Kingsway School for giving him permission to break their haircut policy for this great cause. Hope your head's not too cold Will.
Completed! 2hrs 16 minutes 3 seconds. It was far tougher than I expected with the hills & the heat but the residents of Leeds were amazing with their cheering, water hoses, sweets & oranges. A massive thanks to Mike, Dan, Shannon, Iain & Tam for their advice, encouragement & belief that I could do it & congratulations to them all on their completing it too!
So my next challenge is to run the Leeds half marathon on 8 May. I can't promise to run it all but I'll do my best!
Latest fundraisers - Maria Cross & her dad Ian Henderson who successfully climbed Ben Nevis for PAWS-GIST raising £455! Well done, I may have a go myself in September.
Cycle challenge: so 12 adults and 15 kids cycled all 27.25 miles from Parsley Hey to Ashbourne and back - that's an amazing 735.75 miles between us! and the youngest, Luca, is just 7 years old! Well done all.
Update: So our fundraising continues. After a fantastic summer fete at work where we raised over £1534 (!), on the anniversary of our climb of Snowdon, we're cycling the Tissington Trail in the Peak District. Most of the Snowdon crew are participating (that's 13 Adults and 15 kids). The aim is that between us we will clock up 260 miles. Look out for our challenge next year.
My story: So 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 StromaTumour). 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 few drugs that can stabilise the tumours; the first didn't work for me, the second Sutent worked for 3 years and I'm currently on Regorafenib, the drug we successfully campaigned to keep on the cancer drug fund (#100,000voices).
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 full time and lead a pretty normal life but I do suffer from side effects, including extreme fatigue, struggling to retain weight & thinning of hair - hence the pixie cut.
But the impact is hard on all of my family.
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 (Cancer Research doesn't currently fund research into GIST).They are looking to raise £250,000 - a mammoth task.
My fundraising started on Saturday 19July 2014 when my family and 7 other families climbed Snowdon -that's 13 kids aged between 6-12 that were herded up Snowdon. Some of the boys/men wore dresses and make-up to draw attention to themselves!
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.
I still consider myself a fortunate person; I have some amazing people around me and without these, I'm not quite sure how I would have coped.
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. Please add PAWSGIST into the comments if you donate.
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