August 3, 2008 at 3:39 pm #21297rickKeymaster
Thanks everybody. Look for some changes coming up in the next few weeks.August 2, 2008 at 6:26 pm #21296tiapattyMember
This is Patty Librarian. Rick, we need to talk, maybe by phone, to see if there is a way we can catalog the board, assign subjects to posts, like a library catalogs its collection. Right now I am too busy with arrangements for my mom but if this is possible, it might make the board more functional. I will do some research when things calm down for me.August 2, 2008 at 6:00 pm #21295lainyMember
Carol, believe it or not when you make me chuckle that is a BIG help!!! I was thinking about the Caregivers as well. I am thinking also that some kind of buddy system (if someone wants it)would be nice. Like I know that there are maybe 4 in the area of Phoenix who have come on this site. We are a rare breed in more ways than on, yes?August 2, 2008 at 3:44 pm #21294carol58Member
The caregivers spot now is all about after our loved one is gone. That is good and we will need that someday, but there’s so much in dealing with the day to day. Wish I could think of something to help other caregivers lives smoother and help with all the nightmares we encounter. OK, I’ll stop and think some more. Thanks!
CarolAugust 2, 2008 at 3:41 pm #21293carol58Member
Rick, thank you for all you do! Under Caregivers, would it make sense to have something like Financial Resources or Soc. Sec. Disability. I know a big part of our journey has included financial struggles over 14 months and I can’t be the only one. I’ve had to fight and learn along the way. Maybe something so it won’t be so hard for others. A caregivers venting place where we won’t be struck down with lightening if we utter a cross word about our loved ones? Oh, I forgot, I already do that anyway, don’t I? I’ll keep thinking.
CarolAugust 1, 2008 at 5:59 pm #21292jeffgMember
Hi Rick, Here is my suggestions. Keep or throw. I do think the site can be condensed a bit and maybe help on the confusion of what to post and where.
From the Cholangiocarcinoma Foundation to you: Announcements and Updates to keep you informed
Cholangiocarcinoma Foundation Calendar of events: Meetings, Symposiums, Studies, Podcasts, Fundraisers, etc.
Suggestions/Ideas: If you have any suggestions or Ideas for the Cholangiocarcinoma Foundation, Please post here. What you suggest may be of great benefit to others
General Discussion and Events…….Delete
Patient/Caregivers Sharing Current Events: Breaking local news, upcoming television specials, Podcasts, Events. Feel free to post times and dates and locations of any cancer related topics/events
Features and announcments and Suggestions……delete
Combine… Research/ Clinical Trials
Combine… Nutrition and Alternative Treatments
Thought for the Day……. Nice but If not going to be used ……delete
Thats about all I can think of today.
Thanks Rick! P.S. I think a lot of people don’t realize that there are links on top that take them to the different places and subject matters that practically provides all infor you could possible get with the exception of personal experiences. If highlighting them links or somehow bring them links to members attention. Maybe in the Introductio area make note of above links. Just a thought.August 1, 2008 at 5:58 pm #21291saraMember
Here’s my stab at it. I may have missed some threadsd that are needed. I just based this list off of the current structure, and adjusted accordingly:
o General Discussion
o Thoughts for the Day
o Pain Management
o Alternative Treatments
LeedsAugust 1, 2008 at 2:48 pm #21290devoncatMember
Like Lainy I need to think on this…August 1, 2008 at 1:43 pm #21289lainyMember
Hi Rick, we are not ignoring your question, still thinking. Not sure how it would be done but how about dividing in to diagnosis areas but all related to CC.
Like a site for those affected with Liver CC, one for Whipple, one for Pancreas.
In other words the major parts connected with CC. How about a site for suggested reading material. The problem is people want to all come together and “talk” together as there is a need to be among many so the site doesn’t always work the way it should. You already have nutrition and chemo but they are posted mostly in Experiences. So maybe experiences needs to be broken down in to the subjects. I am rambling but trying to help. IF I think of anything else will let you know.August 1, 2008 at 3:47 am #1417rickKeymaster
We’re looking at restructuring the discussion group. The posts and forums are a little “hodge-podge” right now. People are posting all over the place.
Any ideas on a great way to organize the forum topics?
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