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I\'m Baffled

12 years 10 months ago #38171 by mmc
Replied by mmc on topic I\'m Baffled
Cynthia,

That was part of my point. Posting a question isn't the only way to get help here in the Forum. I know about some of the other things you guys do, which is great. We each have our own style and having multiple ways to give/get information is great because it reaches the largest audience.

Facebook and Twitter and such are good for lots of folks. Not me, but I don't represent the majority of much of anything. I use Facebook almost solely for family and very close friends. I don't tweet and likely never will. If I do accidentally tweet, I take GasEx for it. :) Each has its place and people use them different ways so it is certainly wise to cover as many bases as possible.

Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 10 months ago - 12 years 10 months ago #38170 by Cynthia
Replied by Cynthia on topic I\'m Baffled
Mike with your professional experience you understand that what you think you see on websites is not always what is going on. We have worked the past years building up our web ranking and continue to do so. What we know from the statistics is that for every registered user we have we have a thousand lurkers. Why some people chose to read and do not contribute I am sure has a different answer for everyone. What we also know is the length of time spent on the site, when looking at most websites average time on site is counted in seconds on out site the average stay is counted in minutes. People stay for hours and keep coming back, in the commercial world that would be worth millions from ad revenue. We also know from our statistics that although people use the entire site the forum is the star with more time spent here than anywhere. And they do not just look at the new posts they dig deep as we have over 30,000 posts and growing that can be deep indeed.

The calls that come into our main office are usually calls from people in crisis and we try very hard to make sure they get the resources they need. We of course always make them aware of the value and availability of the forum but it is not a good answer for all. We also get a high volume of people that do not use the internet and receive our number from many places. For example we have worked hard to get our number into as many cancer resource rooms as possible; even though there are still plenty of them we need to connect to. If you are primarily involved with the ABLCS through the forum you may not realize that there is much more to what we do than the website.

We have to remember that no everyone will be able or willing to use the forum. As we have designed and redesigned this site we have tried to factor in different communication styles. To us the question is not how do people reach out for support but do they receive it and our goal is to see that they do.

We are also expanding our presence on Facebook and Twitter and will be expanding farther onto YouTube soon. We will continue to try to find ways to reach as many people who need help and support while dealing with bladder cancer as we possibly can.

It is wonderful that we have users that care enough to worry about the forum and it success. Please know that our readership is growing and that we will continue to work to see that it continues to grow and stay the positive place it is.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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12 years 10 months ago - 12 years 10 months ago #38165 by mmc
Replied by mmc on topic I\'m Baffled
Pat,

I think you posted a very interesting question. I think some folks get what they are looking for by reading posts of others so they don't feel the need to post.

This forum has a lot of great information on it and navigating through conversations can be quite educational and probably answer a lot of questions people may have.

I think there are tons of people who just don't like to post or prefer to browse.

If people were forced to sign in just to read posts, it could be that many people would then not get extremely valuable information (which I think is likely counter to the goals).

As to "other sites", I think all the posting about nonsense makes them less valuable. Personally, I am not looking for a social networking site when it comes to bladder cancer. Others do want that. When I first discovered this site, I wanted information and wanted to hear real answers from real people who had gone before me in dealing with bladder cancer.

Seeing things on other sites like "I have no idea about your situation but wanted to say hi and welcome to this great site with all of us great people" is pretty much just a bunch of BS and makes it harder to get to the real answers. I think it is about quality of information, not quantity of non-answer answers.

If the information is getting to the people who need it, then I think the site is accomplishing its mission. I do not think that number of posts is the right measure. If I were to come to the site, do some searches, get answers to my questions and be able to move forward or even just realize that I am not alone and others are out there who've gone through the treatment that I may need to go through and they are not all dead....that may be enough.

I think that the statistics around what people "search" on and how "Guests" navigate through the site would be a better measure to determine if the goals of the site are being met.

Not everyone wants to share their personal situation. If they get what they need, then nothing wrong with that. It is only when they don't get what they need and still don't ask that would be a problem situation.

That's my opinion. Great question. Thought provoking!

Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 10 months ago #38161 by Babsiebob
Replied by Babsiebob on topic I\'m Baffled
Pat
I know what you are saying and I did post my journey through my bladder cancer. I have learned most of what I know about the nasty disease from everyone on this site. I wouldn't miss one day of reading what everyone has to say and getting on the chat site on Sunday night. Unless my computer messes up, like it did this past weekend. Thanks for all of your knowledge and concern for all of us.
Barbara
Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good

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12 years 10 months ago #38160 by Patricia
Replied by Patricia on topic I\'m Baffled
Babsie.....aha...my aha moment. It really doesn't matter whether you know the medical terminology or not. Its helpful to get an answer when you don't understand it but there should be no boundries on posting. We all need support no matter what stage we are at or where we are in recovery ...its all so different in many ways for each of us. We all learn something.
And Sara anne if most are using the "contact us" button and only posting to Cynthia whats the point of having a forum?
And i see lots of new people on Facebook but they do not post here and they really do not get the help they could and besides whatever you post there goes everywhere so i'm generally hesitant to post on that site.

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12 years 10 months ago #38159 by Babsiebob
Replied by Babsiebob on topic I\'m Baffled
Pat
I don't post a lot because I feel others know more about the medical terms than I do. I can tell you first hand what I have been through, but sometimes people don't want to hear that. By the way I lost 36 pounds when I had my RC. It took me from June to November to completely heal from this nasty surgery. I wasn't finished then either. I had a kidney shut down a year later and had to have a stent inserted that has to be changed every 5 weeks. It all goes with the territory I guess. I also love all of the people on here and have learned a great deal on this site.
Barbara
Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good

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