March 10, 2013 at 9:23 pm #69598claremSpectator
I needed the stats and came here and many other places to look for that. I armed myself with it from the beginning. To put the information in a specific place would however help to avoid it for those that don’t want to see it unless actively seeking it out.
Even without a specific post on stats though, the posts can make for hard reading at times. I feel that posts in general, whilst definitely being a positive forum and a force for good, reflect the course this disease all too often takes. Before I got my head around the stats, from posts alone I knew the severity of the situation that lay ahead. I’m sorry if I’m now being negative, it’s certainly not my intention and what I’m trying to inarticulately say through the Internet ethers is perhaps coming out all wrong. I’m just not sure how easy it is to avoid in a post as a post about oneself or family member could also make reference to existing stats whilst not specifically being about that.March 10, 2013 at 9:19 pm #695972000milerSpectator
I changed the name of my topic where I post most of my statistical information from “Cholangiocarcinoma.org Statistics” to “Cholangiocarcinoma.org Statistics (CONTAINS SURVIVAL STATISTICS)” This is in the Geneal Discussion area and is where I post most of the statistics from my cc database. Some of my statistics appear in my other posts but I include them to answer questions or to expand on topics I’ve introduced that did not originally include statistical evidence.
BruceMarch 10, 2013 at 8:49 pm #69596
Gavin, this is exactly the stats I meant. Thanks,
If I was to post something purely on survival stats or anything like that then I would put a warning in saying that the link contained these stats and only read the link if someone wanted to read that info.
One day I will learn short cuts instead of taking the long road around! And as you can all see, us Moderators are totally unrehearsed. What you read is what you get! LOLMarch 10, 2013 at 8:42 pm #69595gavinModerator
I understand the points that you are both making Lainy and Randi and I agree with much of what you both say. However, there is a problem in that stats appear in so very many of the articles and research pieces about things like procedures, trials, drugs and just about everything else as well. Pretty much all of the links that I post in the new developments section contain stats of some sort and I don’t post them because of the stats etc, I post them because the medical info in the link may be of use to someone.
If I was to post something purely on survival stats or anything like that then I would put a warning in saying that the link contained these stats and only read the link if someone wanted to read that info. Not sure of the way around this really as I already post my links etc in sections that are for them and not in the newcomers/general dicsusion boards.
And Percy, you keep posting away!March 10, 2013 at 8:16 pm #69594
No, No, Percy. Your information we take as valuable MEDICAL information and that should be posted “out loud”. We are talking about statisitics that someone may read as “OMG, I only have such a short time to live”. Help me Randi. Can’t wait to get off these Preds! Like, the other day Sandie from France gave an honest post on how she tries to be so up but is actually so scared. Then she reads a post on mortality rates and my guess is she didn’t feel much better. I feel we have given so many HOPE here and without that HOPE what have they got since we know our statistics for the most part will never be correct. My point was do our members want to go to a category for the statistical stuff if they choose or do they want to continue to read openly about those kind of things. Please, keep up your valuable and unselfish and caring work as you have. You are so valuable and precious to us and have helped so many with your great advise. If anyone looked through most of these posts from members everyone has helped each other in the hope department, I just hate to see that hope taken away. This was my own opinion and I was curious to see what members had to say about it. You my dear SIR keep shouting as loud as you can!March 10, 2013 at 7:59 pm #69593pcl1029Member
I am confused , I think I understand both of your good intentions, therefore should I just provide my point of view to patient just through my emails to individual patient ONLY and report only those good news here and ignore the reality of medical science. I know most people come to this board for emotional support far more than for other reason, but I think it holds true too that others would like to learn about this horrible disease for medical guidance.
God bless.March 10, 2013 at 6:52 pm #69592
Randi, you always make sense! You are Randisense of which I can always use a good dose of!March 10, 2013 at 6:38 pm #69591RandiSpectator
Thanx Lainy! I am really curious as to the response from folks. I know when I was first diagnosed I wanted all the statistics I could get. When I found them I would get upset and my husband would gently remind me that I am “ME” and my situation is not like anyone elses. However, I still sought the stats (maybe its the masochist in me).
In any case, I was a little disturbed by recent posts about mortality since I really wasn’t seeking the information and then boom, there it was. Hit me like a ton of bricks again. Not sure why I had that reaction, since really nothing has changed since my last search for stats, but I guess I was starting to treat me as just ME and not the stats and this pulled me in again.
So my vote would be to put this information in another area where it can be found by those seeking it, but not discovered on the board by those who may not be ready to see it.
Just my two cents…
-Randi-March 10, 2013 at 6:23 pm #69590
WOW! Randi, we are so in spirit together. I was telling Robin (daughter) about it and how about 15 minutes later it was gone. BUT found it in my post files! I will repost it and thank you so very much. You are right, while we are an open forum we don’t want people turning away, so I felt perhaps statistical stuff especially having to do with survival could be filed instead of open. Yes, I would like to know what others think about how we do things especially as we seem to be growing up so fast.
REPOSTING per Randi’s Request the portion of the post questioned:
Some statistics that were posted about CC and time frames. I opened this post then Sandies from France who is trying to adjust to her CC and I had to start wondering….we are a free open forum BUT we try so hard to give hope and miracles so is a post like that too disturbing to you all. What I am trying to say is should it be a “closed” post that one can open if one wants to or should it be an open post that you all want to see. I hope you all understand what I am trying to say, my mind is not clear yet, still on mega Prednisone.March 10, 2013 at 5:54 pm #8072RandiSpectator
A little while ago on another thread, Lainy brought up the topic of whether posting mortality statistics and other more ‘negative’ stuff openly on this board was demoralizing to people trying to stay positive. I can’t find that thread anymore, but I am also curious as to what others think about that. (I hope that I captured the spirit of your post Lainy).
The suggestion she had was putting this information in a place where people could actively choose to read it, instead of intermixing it with other information or posting it on board topics where people usually go and might inadvertently read.
So, in the spirit of open discussion, I bring it up here for input from others (since I can’t find Lainy’s original question).
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