Posting Sensitive Subjects and Statistics
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Randi….I agree. This is a great topic to present. It solicited the input of our members and allows for a great overview of people’s opinion. After all, that is what we are – a great people board.
Hugs,
MarionJumping in with both feet on this subject…I come to this site because it gives me real world answers to questions about CC. I love the support and how info can be followed to actual studies and information. Yes the statistics are staggering and a slap in the face but that is what they are. I don’t think hiding them on special pages or calling out hey…bad news here, is the way to handle them.
I love the way this website is set up from the threads of personal challenges to the dry read of a study. Every person needs to decide on their own how much “honesty” they need at any given time. It’s very easy to hit the back button if it gets too much for you.
Currently Im looking at studies at what people have done after a 16 course gem/ cis. So talk about statistically dry and depressing looking at studies with some outcomes I’d just rather ignore. But I’m learning…I want to know what has the best chance in the bad lottery of having CC because each little improvement of 6 months longer gets me that much closer to them finding a cure.
So big kudos to all that take the time to post results and hunt down studies and keep us on top of the FIGHT!Cathy
Nah you didn’t whip up a storm Randi, just brought up an important topic for discussion. It was good to read everyone’s views and opinions on it. So nope, you don’t need to work on that trait Randi!
I value the support and all the information and statistics. If you take out the statistics then you would not be able to post so many of the great articles (which include stats). I would rather read stats here with the caring and supportive members than somewhere else on the web.
Just my opinion
Hugs,
LisaThanks Sandie. Many read more in to this than what Randi and I had intended. The bottom line was perhaps we should mark some posts SENSITIVE. We did do that for awhile and somehow it got lost. By marking some things Sensitive the post is still posted but people can then decide if they want to read it or not. We never meant or actually implied that anyone should ever be censored as this IS an OPEN and Free Board. Don’t know how this got so misinterpeted. Nothing is going to change except that I am choosing to post Sensitive if I feel it is a subject some may not want to read. Take care.
I have always admired this site for many reasons, but for me I particularly appreciate the support and honesty it provides. Now recovering from CC, I can say that I cherished the honesty, I knew where I stood and it allowed me to ask questions from a position of strength through knowledge and the experience of others. Surgeons, oncologists and nursing staff are honest with patients and their families and I feel anyone reading the posts on this site can accept such honesty and believe that those readers are the very people who want such honesty. They know that there is no magic cure hidden amongst these posts, they come to know that there is love, support and honesty. I suspect that highlighting the fact that information may be of a sensitive nature may draw people to read such information. How many times have we read posts that include a phrase along the lines of “I am so glad I found this site” yet have we ever read a post that says the opposite? This site is an amazing source of information … some information we want to read and some we don’t … but both become valuable in our quest for understanding. i would advocate it continues to be that way
Sandie
XThis board has been so valuable in our, my familys, fight against CC. My own opinion is prepare for the worst but fight for the best. The only true information I was able to obtain came from right here! I could not put my head in the sand and ignore the facts. This board helped me help my son live the best life possible and helped me to know we were not alone in this fight and everyone’s CC does not take the same road. Just as reading the good news one needs to read the sad news and process the information. The open honesty and compassion here armed me to help my son, my family and myself. This board is where I came to look up every question about stats, symptoms, what to expect and how to help. The medical community does not know and has nothing like this board available. I wouldn’t change a thing! And the small doses of sad news, interspersed with the good news, gently leads all to what might happen. Just my opinion and of course my never ending gratitude to all of you!
Although, I much understand the impact of disturbing news on this board may have on some individuals, I strongly believe that the concept of this discussion board has stayed true to its form and that it has been successful for that very same reason – it offers an uncensored venue for expression of thoughts and ideas.
Hugs,
MarionI, too, find many posts upsetting, but I also know the mortality rate, while still horrendous, is better than 2 years ago when I found this site. When I was diagnosed, it hit me like a ton of bricks that I might not live to see my 50th birthday. By the way, I turn 50 in June and I have no intentions of going anywhere for a few more years at least. I am coming up on my 2 year anniversary of hearing the word cholangiocarcinoma for the first time, and my initial searches all pretty much said I was done. I’m still here and still “not sick!”
While it s extremely upsetting to read some of these posts, I find it encouraging to know the mortality rate has dropped so much in 2 years, and I hope and pray that within the next couple of years yet more breakthroughs are found and the mortality rate percentages change to survivor percentages!
I will agree that adding to the title saying a post has sensitive material may have merit. But then I think that I often click on a post that says “my mom” or something as “mundane” and end up crying like a baby over someone’s post.
It’s a hard decision to make, and I often skip posts when the title sounds like I would get far too upset. Then again, I read most of the medical links pertaining to me, no matter what, for any new information I might glean from the new research.
Sorry if this is disjointed. I’m trying to be cohesive, but don’t seem to know if I am making sense.Wow, what a big discussion!! I think the
is the way to go. Although, if people are like me, I always read those. I find many posts upsetting, but I feel I learn so much from everyone. Sometimes I just have a good cry and pick myself back up. This cancer is rotten and there is no way to sugarcoat it. I’m sure I would feel differently if I had CC. This is the reason I participate on this site and Lauren does not. Yea as far as I am concerned a simple
above the post would suffice. In my opinion, as to article links, people are free to go or not, so as long as there is a description like there always is, it’s up to individuals to go or not to read the article. I don’t think it’s fair to ask the poster to read the entire article for sensitive information…that is up to each person once they know the title of the article, right?
Bruce..thanks and that is just great.
This has been a good feed back and I do have a little suggestion for all. For a while when we were posting about Hospice or getting further down the road we just labeled the post SENSITIVE> Perhaps it would help to do that again, me included. Then people can decide if they want to read it or not. When someone wants to know more about Hospice or “the end” I usually e mail them personally and do receive some emails asking me about it as well. Sadly it seems to have become a forte of mine.
Like Randi said, I in no way want Percy or Bruce to stop anything was just concerned about others feelings. Nor more no less.I think it’s an interesting topic, Randi and Lainy. It’s hard for a board to address everyone’s needs and whatever you decide is fine with me. I’ve never found an internet board that is friendier and more supportive than this one.
Sorry Lainy, I was offline for a while hence I did not chime in.
So I think what Lainy (feel free to correct me if I am wrong) and I were referring to is when someone is on the board asking a question about something and there is a response that gives the hard stats in there. That may be what that person wants, but it may not be what others want to read. So perhaps having a place to refer them (ie. our lists of hospitals) would serve that person better and give others the ability to not go there.
Links and such are great. The reader has the choice of following the link to an article (which may have information in it that’s hard to hear) or not. I often go to them when I want that kind of information myself…I don’t often understand all that is being said but I guess that’s my problem
Percy/Bruce: I think what you post (and everyone else) is invaluable and the effort and attention and caring you put into everything you post it is obvious to us all. Please do NOT stop or take this as if anyone (least of all me) is asking you to stop.
I just understood what Lainy was saying because I experienced it the other day.
Man can I whip up a storm…it’s a bad trait that I will have to work on.
-Randi-
Oh and these are just my opinions for sure. Others i am sure will have other opinions. Just thought I’d give mine.
I think most patients learn the statistics very early in the process. When my husband was first diagnosed, we received an information pamphlet from the American Cancer Society that was less than encouraging. I came to this website for information and I have found a wealth of it from Marion, Percy, Gavin and others who post links to studies and websites about cholangiocarcinoma. Like Clarem, I find some of the personal stories, particularly about patients in the final stages of the disease, the most difficult to read. For a long time I limited myself to the more scientific sections of the board as well as the “good news/what’s working” section but I then found that I could learn a lot from the other sections of the board too. Although some of the posts make me sad, many of them are full of hope and provide information we would never learn elsewhere. Personally, I like the open discussion on this board and would not be in favor of changing it.
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