I struggle to even get into this mix but, for many personal reasons, I feel I must respond.
First, I want to say thank you to all those who try to add their input to benefit others. The moderators are truly caring people who clearly would do anything in their power to help. And it's not just the moderators. It's so many people who have "been there" and want to try to help others.
Second, I feel Dorian's pain. It is challenging to find answers - or even a path forward - by using this forum. Yet there is a mountain of information and a plethora of experiences. The hard part is digging through all of it to find what is truly relevant to a particular patient/caregiver.
This forum is useful, but it has become the primary vehicle with which to seek answers. And that is not the structure nor design of a blog (i.e. this forum). Where else do you peruse through hundreds, if not thousands, of personal messages to find an actual answer to your questions? It's not the people, it's the tool that causes frustration.
I know the foundation is working on an improved website and I eagerly await the revision. I also understand that, in some cases - myself included - we are searching for immediate solutions. This foundation, and this website, has become the standard "go to" site for guidance by Cholangiocarcinoma patients and caregivers around the world. That is a huge challenge - keeping ahead of the information associated with CC, and then providing it to everyone in a consistent manner.
There are no easy answers, but I will still come to this forum in the short term to look - even if that doesn't happen daily. I know I will miss out on possibly key information on those days where I cannot log in - and I wish there was a better way.
I also know I truly admire and respect every person who is willing to come here to post their personal information so it may benefit others.