Faces of Cholangiocarcinoma
- This topic has 32 replies, 11 voices, and was last updated 11 years, 1 month ago by
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Ha, ha…thanks. Now, how did we end up with this conversation? Although, my picture is displayed as one of the CCF board members, I am ready to change it, as it was taken 6 years ago. I just have this issue with displaying it on the Avatar – not sure a valid reason – but somehow I prefer to stay somewhat incognito.
I like the option of either displaying the picture or not – it is personal – but have to admit that it is nice to have a visual connection too.
Hugs,
MarionI’m not talking while the flavor lasts. We will see if we get anymore responses. I don’t know why we get in trouble together!!!!!!!! I won’t say if she is leggy or not BUT I know she could use about another 5 pair for the way she runs around for CC.
Ha, Ha good one, Randi, girl. Should we play a game here? Only rule is that you cannot have met Marion before. Those that want to can describe in a post what they think Marion looks like! I did this in my head with Randi and Clare and I was just about right on! Since I have had the pleasure of meeting Marion, I will bow out. I hope its OK if we have a little fun at your expense, Marion. All done with love and a little diversion.
Thanks, Lainy. Personally, I like the idea of placing a picture in the Avatar. I anticipate our site to be expanding globally and for that reason alone it would make sense to stick with the best available option – Avatar.
Hugs,
MarionThe answer for me was very clear. As you all know, I was Teddy’s Care Taker and advocate and I could have NEVER gotten through those 5 years without this sight and you Marion and Jeff G. My goodness who had ever heard of such a Cancer and I am going back 8 years ago when a lot of Doctors had never heard of it. No, this site is not for the weak of heart, but I know so many people have been helped and lives prolonged with all the sage advise. I do think Randi has a great idea to have a page In Memory and a page for our warriors. It would be a lot of work with constant updating. Want to remind all that the Avatar picture works well for now and it really is easy to use. If I did it you all can post a picture too. I really am computer illiterate. Also it is all your ideas that make this Site so outstanding. You may not know this but we are being talked about all over the world!
Correct. This is one of the issues we are mulling over – the affect it has on those fighting this disease. But the discussion board is to be run by the members hence, all comments are welcome and ultimately will be implemented.
Some people shy away from this site due to the negative impact it has. How do we find the perfect answer?
Hugs,
MarionI agree Lisa. When I was first diagnosed I went through the faces of CC looking for survivors and was actually driving myself crazy. I would see someone on there and then go to FaceBook to see if they were there and alive or google their name. It’s such a fine line between realism and hope. I actually found very few people alive and it was quite depressing for me.
I like the idea of a memorial page separate from the faces of CC, however, who will maintain that when someone loses their fight?
It’s all so complicated isn’t it. I am curious as to what others think.
Just my two cents
-Randi-I am very excited to see the new website! When I was first diagnosed I googled Cholangiocarcinoma and this website came up. I started moving through the website and clicked on the faces of CC and it was devastating to see that so many lives were lost. I thought I was going to see the people surviving from this disease. Maybe there could be two links one as a memorial page and then another for the faces of CC could be those still here with their story.
Just an idea.
LisaSpeaking of seeing faces, dear Julia, so good to see yours! I hope you are doing quite well! It is always a treat for us to see you again!
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