Glad to be of help as always and I totally agree with everything that you both say. I came here back in 2008 right after my dad got his CC diagnosis that summer and having taken to the internet to find out all about CC I found this place and am glad that I joined straight away. Everyone here was so helpful to me in a ton of ways and it certainly felt like family. One of the things that helped me most was the fact that I wasn’t having to deal with everything on my own and I knew that a ton of people could relate to how I was feeling and what I was going through from the carers and family member of a patients perspective.
Personally I pretty much shared everything that was happening to me and my dad, what we were going through etc but yes Mary, I agree that not everyone is like that but it is just the way that I am.
I hear what you are saying Kim about Rich and I so hope that you can get him to come to the boards if he felt comfortable about that as I think it would be of help to him as well to be around others that are having to deal with what he is as well.
Having a rare illness can be isolating, as there are few opportunities to meet other patients with similar experiences. It was more than a year after diagnosis that finally I met other cholangiocarcinoma patients, and it was the Cholangiocarcinoma Foundation annual conference that made that happen for me.
This discussion board is also a forum to bring folks together. The patient stories that are posted give information, suggestions and comfort to readers.
It can be hard to share health information as it feels very personal. On this board, if you wish, sharing can be done anonymously. Patients and caregivers know first-hand what it is like to go through the various tests and treatments, and these experiences enlighten us all.
Thanks Gavin for the article, I hope I can get Rich to read this and maybe then he’ll agree to talk to some others who have this horrible cancer. I know being able to talk to others either here or other sites has helped me a lot in understanding treatment options and handling emotions to, just can’t seem to get him to open up and talk about things, I know he doesn’t want to upset me so that’s why I think talking to someone who has this to would help him immensely. Thanks again!