Laurie Posted January 3, 2004 Share Posted January 3, 2004 I was thinking about the possibility of creatin a patient biograph similar to the wall of memory for the benefit of others... it could be updated and would contain pert info that others could benetit from...including setbacks..and gains.... I am willin to finance it if costly to benefit others.,, sometimes the info get lost or you cant recall a certain persons story.... sometimes i know my Moms story could help others but i don't see the post or can't reply.... Whattcha think? L Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted January 4, 2004 Share Posted January 4, 2004 Great idea! As one who writes pages I promise to keep it short when that is set up. By the way I have yet to see the wall of memory. Is it complete yet or am I just missing it somehow? Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 4, 2004 Share Posted January 4, 2004 Sounds like a plan to me! God Bless, MO Quote Link to comment Share on other sites More sharing options...
Tiny Posted January 4, 2004 Share Posted January 4, 2004 I'm torn here. On the one hand, I feel that some of the signatures have gotten REALLY long and contain information that is incidental or could be condensed or perhaps posted elsewhere (maybe even via a "link" listed in their signature????). I also realize that using our signatures and avatars with each and every post has to be using up a LOT of memory and space. Conversely, I can't remember diddly anymore, and it is less time consuming and very convenient to be able to refresh my memory about a person's diagnosis right while I am reading the post and not have to go somewhere else to access that info. As far as limiting the length of posts, it seems to me that SOMETIMES there are people who really need a chance to let it ALL hang out at length. But really, I'm easy and will go with whatever fits the needs of the most people and is best for Rick and Katie. Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 4, 2004 Share Posted January 4, 2004 I love the idea. Katie, instead of long signature lines, when we see someone post, could we click somewhere to read their biography? I personally have found it so helpful to read signature lines and contact those whose treatment seems similar to my mom. If there were more detailed information on each person, we could all learn so much about this beast and correspond to those who we feel could give support/input/advice etc. I never realized before the beast entered my life that there were so many different kinds of lung cancer and so many different combination of drugs to treat it. When my mom started chemo it was great to talk to others on her particular drug to realize that her side effects were normal. That is my two cents worth Quote Link to comment Share on other sites More sharing options...
Guest Laurie (panda) Posted January 4, 2004 Share Posted January 4, 2004 I think what I am thinking is mainly a latgeer "yearbook" sort of thing were others could learn from .... where we can speak to a new person through our experience . We can still keep a small diagnosis line for the posts maybe DX and Status ie Sclc 11/03 undergoing chemo and rad or something like that.... but a whole "story".... even with, major setbacks, treatments, foods eaten during chemo things you would reccomened to someone newly diagnosed...sometimes when i see a new person I just can't reply... I relive my Moms exp or whoever I can relate them to and I just stare at my computer. Mrs mike, Deb's Dad, Katie's Dad Karmas Dad.... all are patients others could learn from... Gamma knife, Cancer trmt centers of America, topectecan, stories about ventilators...things that are and were so miraculous and could help another in this battle is here somewhere....but where?? I'm not really sure and if someone leaves us goes into remmission or passes away.... there battle can only help others if happened upon or if the person is still giving support while grieving thats alot to ask... however if someone could just say Welcme and you might want to look at Debs Dad he had gamma knife... or I could just say hey check out my Mom that way I'm not sobbing at my computer reliving the bad times..... I know I don't mind it but sometimes i get so down...maybe its just me...sometimes its therapeutic but other times I think if I say somthing good I'm going to 'jinx' my mama.... I'm a little nuerotic but I have a good heart and trully want to help others... Just a thought Laurie Quote Link to comment Share on other sites More sharing options...
BarbaraL Posted January 5, 2004 Share Posted January 5, 2004 I really like the idea of people posting details in a profile of sorts, and limiting the signature to a few lines. I've tried to keep editing my own signature to keep it short, but I've worried that someone in a position similar to mine might miss details of procedure, timing, etc., that could be helpful to them. I *do* find the detailed signature info helpful, but putting it in another place would make reading the boards a whole lot easier. My two cents, Barb Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 5, 2004 Share Posted January 5, 2004 Hey Laurie, I am glad I am not the only nut job who is afraid to say good stuff in fear of jinxing It is like her CEA went down a point, the dr says she is tolerating chemo well, but I cannot get excited or think of it as progress. G-d forbid I jinx I bet there are tons more of people out there like that! Quote Link to comment Share on other sites More sharing options...
Laurie Posted January 5, 2004 Author Share Posted January 5, 2004 Hey Andrea, Oh yeah, You will see alot of that here.... people not posting in "Good news" or dates of scans... etc.... I quess its that whole Why?? No one can undersrand why this happened to them or thier loved one??? Or perhaps it goes back to our childhood...."Step on a crack you'll break your mother's back!"...Who thought that up anyway? Our anxiety disorder can be traced back to kindergarten ?? Glad to hear your Moms doing well....KNOCKONWOOD!!! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 5, 2004 Share Posted January 5, 2004 Katie, If we were to have the bio elsewhere (a link like the PM or email options, maybe), would it be possible to also post the pictures there, as well? The strings take almost a lifetime to load on my machine and I have a total zero tolerance in the patience category right now - sometimes, I just give up since I get so flippin' frustrated at having to wait to see who the next person will be to join Ry's Chub Club or welcoming a new member... I would think a simple "point & click" like the PM option would be user friendly and a quick way to view pertinent information...(and taking the signature lines and pictures off EVERY response might help those of us with less than state-of-the-art machines and dial-up connections). Becky Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.