Is that you, Malc2073?
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Malcolm….I believe that the Cholangiocarcinoma patient and caretaker community have become the most impressive troublemaker in re: to this cancer. Articles such as yours (minus the incorrect journalistic statements) raise awareness not only within the general population, but also amongst researchers and physicians. Pharmaceutical companies take note: Developing drugs for this disease can prove to be a win-win situation for all.
Hugs,
MarionYes indeed this is/was me (again! ).
The article was done for cc awareness month in Feb and was delayed somewhat.
Great when you get calls from folks who start by saying…’I heard you had been not well but I had no idea…..etc’The article had a couple of questions that surprised me and which Helen of AMMF corrected particularly the binge drinking and diet reference.
I sometimes look at articles such as this and wonder…”is that really me ?’ !
Malcolm
Percy-Great positive story!! Malcom-many congrats, keep posting and giving our CC family HOPE!! I love the quote about “I can’t wait till they lose interest”, such a simple goal!!!
CathyHi Percy,
You wrote:
Quote:If people want to find out more;as some members indicated, our site-the cholangiocarcinoma.org is doing much much better ; the problem though,is how we can improve the chances for them to find us. Any thoughts?I wouldn’t worry about this. Our forum has an excellent exposure on the Internet. When I google very specific CC topics, I usually hit forum posts. Right at the top of the first Google page.
To give you an example, I just googled “cholangiocarcinoma chemo nausea”. The first two results point to this site. You can’t ask for a higher profile.
Hi, Eli
Thanks,Eli for your suggestion.
I do not intend to touch the Wikipedia at this point and I will let it go for now ,as you said,there are too many hurdles to overcome in order to achieve a little.
If people want to find out more;as some members indicated, our site-the cholangiocarcinoma.org is doing much much better ; the problem though,is how we can improve the chances for them to find us. Any thoughts?
I am doing translation for the two brochures or leaflets for this foundation and I think it will be done soon. Once it is proof read by the doctors;then we can hand them out in the conventions or cross-over to put it on the Sina English/Chinese web site,(the Chinese google). In that way,if it is what this board wants, We can truly be reached globally, then all the efforts you and other spent on this web site will not be in vain.
God bless.Hi,
Gavin, thanks for confirming that.Eli, I think I saw you did some work on the Wikipedia, but did they accept your work and suggestion about adding a “northern Ontario’ info.
I am not so smart on computer related tracing work.
God blessHi Percy,
That is indeed Malcolm!!
http://www.ammf.org.uk/2012/04/17/cc-in-the-daily-express/
Thank you Malcolm!!!
Gavin
Percy, looks like your link was cut short. Here’s the full link:
http://www.express.co.uk/posts/view/314887/I-feel-on-top-of-the-world-after-beating-liver-disease
EDIT:
The article mentions survival stats that look very grim. I think they mixed up some numbers. It looks to me they misquoted 5 year survival rate as 1 year rate.
Hi, Malc2073,
I think that is you,Is it?
Here is the link:
http://www.express.co.uk/features/view/314887
I FEEL ON TOP OF THE WORLD AFTER BEATING LIVER DISEASE
Nice job,well done.
You look good, indeed.
God bless
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