CC.org/vs/ FB pages

Kevin….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,
Marion

I 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!

I 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.

Wells 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

Cathy, 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.

Kathy 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.