Story
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I can draw you one for a donation of £30 or more to my JustGiving page. Please visit www.dfpportraits.co.uk for more details.
My lovely sister had Cholangiocarcinoma, a cancer of the mucus glands lining the bile ducts. Bile is a fluid which helps us digest food - its main function is to break down fats in food - and the bile ducts are tubes which carry bile from the liver to the small intestine.
Because of its "hidden" location - and the fact it's very rare - it tends to be diagnosed too late for surgery to be an option.
The cause of most bile duct cancers is unknown. My aim is to raise awareness of this rare cancer and raise money to fund research into its causes, earlier diagnosis and effective treatments. Ultimately, I hope a simple test will be developed so cc can be diagnosed at a much earlier stage.
I'm joining AMMF's fight against this disease for my sister and for everyone affected by Cholangiocarcinoma, whether as patient, carer, family or friend.
Paul Stroud and I have linked our separate JustGiving pages for AMMF's Cholangiocarcinoma research, to create a JustGiving TEAM. Individually, we stand firm, but together we stand firmer!!
You now have a choice of JustGiving pages:
Mine = www.justgiving.com/cholangiocarcinoma
His = www.justgiving.com/bileductcancer
Ours = www.justgiving.com/teams/cholangiocarcinoma
UPDATED 2nd June 2012 at 08:57
My gorgeous, brave, vibrant sister died peacefully in Marie Curie Hospice, Hampstead on Tuesday, 29th May 2012 at about 01:15. She fought a phenomenal battle for 3 years. Goodnight, sweet sister. I love you. XXXXX
UPDATE 25th February 2012
February is Cholangiocarcinoma Awareness Month (a rare month for a rare cancer) and AMMF's Facebook Awareness Campaign has really taken off. There are some beautiful tributes on AMMF's FB Page and these will be collated and published on www.ammf.org.uk once Awareness Month is over.
In the meantime, here's more information on where your generous donations go:
"AMMF is currently funding Dr Abigail Zabron, a Research Fellow at Imperial College London. Previous work has shown specific proteins in bile fluid can be identified, reflecting different diseases around the bile ducts, so Abi is now applying this technique to bile from patients with CC - collecting bile from those with blocked bile ducts from all causes, to compare this with bile where CC is known to be present. And the hope is that this will lead to ways to better, clearer and earlier diagnosis.
The approx costs?
£10 to collect and store a biofluid sample
£50 to analyse this for clues to causation and finding new markers"
Read more at: http://www.ammf.org.uk/2011/11/15/introducing-ammfs-research-fellow/
UPDATE 12th November 2011
***Video added***
UPDATE 5th November 2011
It is with very great sadness that I must tell you that Valerie Mutton died on Thursday night. She was an amazing fighter whom I met on the CCF boards & was lucky enough to meet in person to celebrate her 50th birthday last year. Dearest Val, I don't know how I would have got through the last 2 years without you & your wonderful strength & humour. Rest In Peace, dear Val. XXX
UPDATE 22nd October 2011
It's been a rollercoaster of a summer; I had a second total knee replacement and my sister's cancer is "progressing". I don't like that word. The peritoneal mets are hampering her breathing and, although she says it sounds worse than it feels, it still sounds pretty dreadful when she's gasping for more air.
Our Aunt Gwen sadly died last month. We were glad to be able to go to her funeral to say our goodbyes to her and to renew our friendships with our cousins (some of whom - the younger ones - we hadn't actually met before!!) Although Gwen's death was in no way cancer related, donations have been made in her honour to AMMF, via this Page. That is such an incredibly kind gesture at a very sad time.
Leonieke - thank you so much for hitting our £750 target with your gift for Gwen. I'm afraid there is only one thing I can do when the target is reached ... and that's to move the goalposts and increase the target!!
Thank you to everyone who has donated and to everyone who will donate. It's such a worthy cause. We want to do all we can to prevent other families going through this - and the way to do that is to Kick Cholangiocarcinoma's Butt!!
UPDATE 18th February 2011
A very big THANK YOU to all of you for your generous contributions and for supporting this wonderful cause. With your help we've raised £560 (+ Gift Aid) for AMMF so far. Helen Morement, from AMMF, sent me the following message, which I'd like to pass on to you:
"Wonderful, wonderful support coming in via your JustGiving page. This is so much appreciated - thank you all!"
This money will go towards valuable research; If you'd like to see how it will be used, AMMF's link is http://www.ammf.org.uk/
Your donations have catapulted us past our initial £500 target and the JustGiving Widget on my phone started flashing "100%" last Saturday afternoon.
Because of your kindness and generosity, which has stunned us all, we've decided to aim even higher and raise our target, so we can expand our research efforts. Sneaky, perhaps - but cc doesn't stop at £500 and neither should we.
Please pop back often to see how we're doing - and remember to pass the link on to friends & family:
http://www.justgiving.com/cholangiocarcinoma
If you're on Facebook, you can also keep up to date with all the latest on our fight by "liking" one (or, ideally, both) of our cc pages (AMMF & CCF):
http://www.facebook.com/home.php#!/pages/AMMF/347407223911
http://www.facebook.com/home.php#!/cholangiocarcinoma
Let's show Cholangiocarcinoma that it made a big mistake when it decided to mess with us ... X
Thank you.
Julia
*** (HEART)BREAKING NEWS ***
Kris Jurgens (aka Devoncat), a truly wonderful woman from Kalmar, Sweden, died on 4 January 2011 after a ferocious battle with Cholangiocarcinoma. Right to the end, it really looked as if she could win.
Every new treatment Kris tried, every boundary she crossed and policy she challenged was in the hope of finding a treatment which would actually work. Her achievements will benefit her whole "cc family". I just wish the cost hadn't been so high.
If you search the skies and see a new and particularly bright star, that'll be her. Wave to her, please, and send her our love. She inspired so many people around the world.
Kris, we WILL get there - for you, for Teddy Sardina, for Ron Strachan, for John Smith, for Rosa Baldacchino, for Pauline's Anthony, Janet's Joel and Darla's Jim ... for those I know and those I don't ... for those who died in the battle and those who fight on ... We WILL get there.
Please help AMMF.
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So please dig deep and donate now.