Sunday, January 10, 2010

So I'm sure you all have heard more than you have ever wanted to about the whole bra color posted to support breast cancer thing on Facebook. Personally I've heard enough too. I think it was started with good intentions and has since gotten blown out of proportion. But that craziness tipped off a bit of discussion among some of my friends and me about my cancer, cholangiocarcinoma or bile duct cancer. We got to talking about how the rarer cancers, such as mine, get little publicity, little to no funding for research, and there is very little available in the way of support. All of this leaves those of us with rare cancers feeling alone and sometimes even a bit slighted. Now, don't get me wrong, I do not begrudge anyone with any cancer any and all research and support that they can get. Some people who I love dearly have or have had some of the well known cancers and I am so grateful that there is research and support out there for them. I just sometimes wish that it was also available for me. As far as I know, cholangiocarcinoma doesn't even have a ribbon color which has always prompted me to say, jokingly, that there are "No Ribbons for Rebecca". And usually I do mean it as a joke, but on the really bad and lonely days I have to admit that it does hurt a little to be in a cancer population that is so often overlooked.
So last night I was laying in bed, sick from a chemo treatment, thinking about all of this and I began to think how wonderful it would be if there was a cholagiocarcinoma conference some where some time. A place where survivors and those who love them could all come together. And where health care professionals who specialize in cholangiocarcinoma could come and share their knowledge. Oh I had a splendid time thinking about all the things that this conference could include and if it could have been dreamed into existence I'm sure it would have been last night. This evening I was thinking about it again and typed "cholangiocarcinoma conference" into a search engine just to see what would come up and to my delight I did get a rather good hit. The first thing that came up was not a conference date, but the next best thing, evidence that someone else has been thinking the exact same thing. The Cholangiocarcinoma Foundation, a web site that I stumbled across some months ago on some other lonely night. Under their "get involved" tab, under volunteer, down towards the bottom of a list is "Annual Conference Chair" and a short description. As far as I can tell this conference has yet to be organized but still, it's in someone else's mind as well.
The Cholangiocarcinoma Foundation site is a wonderful one for information about my cancer and a reassurance that I am not alone no matter how much I feel like I am. Like I said, months ago I found this site and actually submitted a picture to their "Faces of Cholangiocarcinoma" page, but then life go busy and I forgot to go back and look. But I did go look tonight, and there I am, it's a nice feeling. I guess I am not all alone after all.
I guess it goes to show, even though I often feel alone in my cancer and I am sometimes saddened by the lack of research and support for my cancer, that even on the rainiest, loneliest day, there are rays of hope and who knows, if we gather enough of those rays we just may be able to light the way to a real answer.


Roses Are Red, Violets are Violet said...

Headed to the site right now. As someone who plans conferences for a living, I wanna know how I can help get this thing rolling.