CC.org/vs/ FB pages
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- This topic has 15 replies, 7 voices, and was last updated 10 years, 1 month ago by marions.
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August 20, 2014 at 9:10 pm #84411marionsModerator
Forgot to mention one important point. The Cholangiocarcinoma Foundation does not encourage others from establishing forums such as our however; the CCF logo is trademarked and therefore protected by copyright law. Please do not duplicate or reproduce.
Hugs,
MarionAugust 20, 2014 at 9:02 pm #84410marionsModeratorKevin….a point well taken. The purpose of this discussion board is addressing the enormous challenges patients and families face when affected by this disease hence, you are bound to come across postings not to your liking, but then that is indicative for any conversation you may engage with.
The nature of this forum is that of free expression encompassing all areas of experiences and thoughts. This crosses over to scientific knowledge and quality information indicative of a disease frequently disabling, impacting quality of life, and the frequently life-threatening aspects of this cancer. Due to the often times painfully honest discussions many are not able to participate on this site whereas others don’t like the expression of hopeful thoughts and suggestions presented.
You must know that we, the foundation board members as well as the moderators are people from all walks of life. None are experts in a clinical sense, but we are experts based on our experiences with this cancer. This is not unlike physicians and researchers in that their opinion is their opinion based on various aspects of their career and it may or may not reflect that of another expert in the area of medical practice. It is for that reason that we encourage readers or contributors to peruse the CCF home page for clinically sound information.
We strive to be the best we can be and discussions such as these are very helpful. It helps us make changes when needed without controlling or directing the process of free expression practiced on this site.This is a good discussion and I much hope for others to chime in as well.
Hugs,
MarionAugust 20, 2014 at 6:20 pm #84409kevin1MemberI’m a member here and at FB. From time to time, there are posts that just irritate me at both places. I’m more focused on actual scientific data rather than emotional or one off anecdotes. I see that more on FB than here.
A few people want to believe that the cause is based on where they live, or their diet, or the stress in their life. I don’t find any of that constructive. There is also some criticism of doctors – we know more than most oncologists. That’s not helpful. I’m all for seeking multiple opinions. But, just because you don’t hear the answers you want doesn’t mean the doctor is incompetent.
And what works for you may not work for anyone else. We all got here in different ways, and the progression and treatment is different. I have a concern that some people get diverted on the wrong path or worse are given false hope.
August 20, 2014 at 3:52 pm #84408lainySpectatorI proudly agree with everything said and honored to have the most loving, caring and smartest people in the world come together right here I also want to add they are the most eloquent! What a family we have!
August 20, 2014 at 3:30 pm #84407jathy1125SpectatorJulie, I think your analogy about cupcakes stores is great. I think the FB pages are a “watered down ” version of the forum. I think in doesn’t have the structure we do, so to give information or names of people who have amazing stories to share like Lisa Craine, Patty from Illiniois, Kris ,Daisy, my self…. will not grow because there won’t be the connect or depth we share here.
Our goal here and on FB is to give HOPE, information and the names of doctors and hopsitals that give HOPE.
I told my HERO,(Dr. Chapman) I would post him name on every wall I could find so now it will be just a little harder! LOL!!
Lots of prayers for HOPE!!
CathyAugust 20, 2014 at 1:40 pm #84406iowagirlMemberI think maybe what we need to take from all of this, is that different people are looking for different types of connection as Marion suggested. I’m sure that some people will join every site for any possible crumb of information they can find. I wasn’t expecting the Facebook group to be like the foundation, but joined anyway, to see what it was. You never know what you might find and where.
And…I also agree with Nancy…..that while I’ll go anywhere to find more information, there is no place like home sweet home….the foundation. Prayers are wonderful and I believe they help, but we need solid, factual information to get through this awful cancer. There is a level of understanding here, that isn’t just different from FB websites for CC…..but for other websites about other cancers or other awful diseases as well. I did some research for a lady about another disease, and I expected to find something for her (I am the queen of the Google searches), but what I found was sorely lacking and totally disappointing. This site is just “different” than so many others out there.
I’ve been doing more thinking about this after having read Marion’s post. There will be patients and caregivers who are ONLY on Facebook….and don’t search further than that. They are so used to Facebook, they are comfortable there. It well may be that as time goes by, the Facebook groups evolve into something deeper, but for now, they are like a typical Facebook status page. which is familiar to a lot of people. The FB CC support group does mention the foundation and provides links now and then to topics so I don’t think they see themselves as competing with the foundation. It well may be that in the end, some of the people who “might only” have found the Facebook page, will come to the foundation as well, having found it through the Facebook page links. And, some of the people here may go to the Facebook groups for additional support.
Julie T.
August 20, 2014 at 11:09 am #84405lulu07SpectatorBing a patient with CC for almost 5 years…there is no place I would ever go and have not gone….
Quite happy being here with all of the knowledge, compassionate and incredible people willing to share, who really get it…this website saved my life if it had no been here I would not have found my angel Marc who read my introduction and immediately got back to me with the name of a surgeon who might give me a chance for surgery as he had done for his mother and he did operate! That would not have happened had it not been for this website! My main point is that people really understand this disease here!
NancyAugust 20, 2014 at 5:50 am #84404gavinModeratorWells aid Marion. I don’t think that people would get the same levels of support or information on FB as they would on here and I certainly don’t think that the personal relationships would be the same either. I’ve had a look at some of the other FB pages and they don’t come close IMO to what people can get here.
But I guess that I am biased perhaps as I don’t really do FB apart from CC stuff, too much rubbish on it for me! And like Julie, I certainly do not think that people would be leaving here for a FB page. A FB page for me is just that, a small page and in no way would have the wealth of support, help and information that people would get here.
Just my 2p worth!
Hugs to all,
Gavin
August 20, 2014 at 5:03 am #84403marionsModeratorWe have established this site more than 8 years ago and since then have built many personal relationships. It is only natural for us to be protective of what has been part of our lives for some time now.
However; I believe that any place that provides a supportive and safe environment for individuals and families makes living with Cholangiocarcinoma a less isolating experience. It is for that reason that I believe we should unite and understand that some may find solace, support and interactions on venues other than ours. Ultimately we want to be assured that everyone touched by this cancer connects with those of their liking.
Hugs,
MarionAugust 19, 2014 at 5:53 pm #84402iowagirlMemberCathy, I do agree with you that the more sites there are for CC patients to go to, the less any particular one is able to do. It’s like when someone opens a store…say….a Cupcake Shop….when there’s none in the town prior. If they’re lucky and provide a good product, people beat down their door and they become a success. Then, suddenly 3 more Cupcake shops open because they see the first one do it and they think it looks like a great idea. It doesn’t take too long after that before all the shops go out of business, because their customer base is too watered down.
Something similar could go on with websites competing with each other for followers or members. However, in the case of CC, I think that there are duplicates from one site to another and thus, maybe not as much attrition as we might fear. I know I’ve recognized names from these boards on the CC Support Facebook site. I don’t think they are jumping this ship….I certainly didn’t. But….they may be as I was…curious. I was disappointed in what I found when I went there, but for some it may be all they really want…emotional support or just a “connection” to others in the same boat. I get that kind of emotional support from just placing a post on my Facebook status page….but I can see that if someone doesn’t have a lot of good, Facebook “friends”, then for this purpose, it may be a really good thing for them to belong to the support group to exchange prayers, etc.
August 19, 2014 at 5:36 pm #84401gavinModeratorThanks for that Cathy.
August 19, 2014 at 12:06 pm #84400jathy1125SpectatorGavin, there are two new FB pages- bile duct cancer awareness and the other is CHONGIOCARCINOMIA SUPPORTERS. The FB pages both post stories, info and questions but there is something so different, maybe because there are no categories or no way to continue threads… I know I have posted a few times about my HERO and expierences but I don’t know they have gotten as far or had the impact that this site has when I share them. I am afraid that to many support sites derails us, cause our cancer is still rare and not enough knowledge about it so taking the little there is and dividing it up doesn’t help those looking for all they can find about it or those having information sharing it.
Lainy this site is mentioned but more as a clinical/technical site.
CathyAugust 19, 2014 at 5:46 am #84399gavinModeratorHi Cathy,
Do you mean our page on FB or some of the other newer pages that have recently popped up on FB? Our page on FB is quite busy I think but it is not like the site we have here. And yes, I agree with what you say re some of the other pages on FB. 6902 members of our page on FB.
Hugs,
Gavin
August 19, 2014 at 4:12 am #84398lainySpectatorKathy and Julie, I just took a peek and I totally agree with Julie. There are a lot of good information sites listed but it does not give you what our site does. We give real medical information and peoples journeys all in a warm and caring atmosphere. I don’t think the 2 sites are familiar at all. When a new patient/caregiver comes to our sight there are real stories, ways to battle this monster and also hope and miracles. It is a vast difference. Perhaps every now and then an invitation could be posted to visit our site for CC Support.
August 19, 2014 at 3:39 am #84397iowagirlMemberKathy, I joined one of the Facebook support groups out of curiosity. The info is not there….and it seems that more people there tend to concentrate on diet remedies and give them credit even though they’ve either had conventional treatment or are having treatment. It has been frustrating for me, as I want facts. I have no problem if someone wants to eat more nutritionally, but it isn’t always about that. I actually answered one gal privately and gave her your name, the foundation website address and how to contact you (she was looking for information about transplants). She never did get an answer from anyone on the Facebook site, unless someone else contacted her privately as I did. I know that once in a while, there is a post about the Foundation…something that was posted on this site. They also posted about the international study and Mayo….with a link to the Foundation for more information.
I don’t see all that many posts from people about diagnosis, treatment, etc. on the Facebook site, though there is some. It’s more like a lot of surveys….”Where are you located?” “What do you think caused your CC?” or “Are you a patient, loved one or caregiver.” It really isn’t something that helps a lot if you’re dealing with CC. The other thing is that there is a good degree of emotional support….prayers, etc. But, in general, it seems there is a real lack of information about CC and treatments by most of the people there. They are nice enough…and well-meaning, and if you are just looking for emotional support…prayers and such, it’s an okay place to go..
As for the number of members they have….I suspect that many are lurkers/readers only….as what I’ve noticed is that the posts aren’t that many and mostly by the same core group of people. ONce in a while, someone new posts about a problem they’re having, but that isn’t all that often.
It might be interesting to know if the people lurking on that site are also lurkers on the Foundation site as well. But, I don’t know if that is possible to know.
I haven’t seen the other Facebook site…..so I can’t comment on that one.
Yes, this site can scare the crap out of you…..but I’d rather have the hard core truth than a bunch of platitudes.
Iowa Girl…still riding that roller coaster
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