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Topic: Chat Rooms at BCO.... need your feedback

Forum: Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts —

Moderator generated forum to present our announcements or requests, organization and website news, blog entries and podcasts. Please do not post here if you are not a Moderator. Thank you!

Posted on: Feb 21, 2013 07:11PM

Moderators wrote:

Hi All, 

We are considering upgrading (in a much needed way!) the chat rooms. But before we do that and spend the money, we wanted to know how many of you use them/value you them. Is it a good feature of our community? If we no longer had them, what would that mean to you? 
Open to your feedback!

Many thanks, 

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...

Page 2 of 5 (129 results)

Posts 31 - 60 (129 total)

Feb 22, 2013 04:39PM marlegal wrote:

I've been going into chat since 2005 after my own dx. At first it was for information and comfort. Once I was done my own active tx, I continued going because these people were and are like family. I read a couple posts where people said they came in but it seemed like everyone else was talking amongst themselves. I am so sorry they didn't feel able to join the conversation. That is another prime reason I still go in. I try to watch for 'newbies' coming in and will try to draw them out, find out what they need, and offer all the wonderful things that were offered to me seven yrs ago. I have made lifelong friends in some of the women I met through the chat room. The live interaction,instant answers and true sense of camaraderie just can't be found on the Boards, which I'm also very involved with. If at all possible, I think chat serves a unique purpose that can't be matched. Thanks for the opportunity to express my thoughts.

"We are all just walking each other home." Dx 8/24/2005, IDC, Right, 2cm, Stage IIB, 1/13 nodes, ER+/PR+, HER2- (FISH)

Feb 22, 2013 09:04PM lynny55 wrote:

Hi I just read this please do not close our bc chat room. It means the world to me. I really need this room they are the best friends anyone could ever have. I've been here 8 years since I got diagnosed oct 5,2004. When I am sad or depressed they help me, when new ones come in I help them. This is a very scary disease & we all lean on each other in time of need. And help each other please don't take it away from us we all need this room!!!!!!!!!!!!Thank you. Sincerely Lynn Forry aka lynny55

Feb 22, 2013 09:23PM lemon68 wrote:

I have gone in and no one was ever there, I assumed they were not used. I would defintely go in if they were available. I love the boards but real time would be great.

Don't compromise yourself. You are all you've got. There is no yesterday, no tomorrow, it's all the same .... day. Surgery 12/30/2012 Lumpectomy: Right Dx 1/4/2013, ILC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/23/2013 Lymph node removal: Right, Sentinel Radiation Therapy 3/17/2013 Breast Hormonal Therapy 5/7/2013 Surgery 9/18/2013 Prophylactic ovary removal Surgery 5/4/2014 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 8/25/2014 Reconstruction (left)

Feb 22, 2013 10:10PM lildee wrote:

When I was first diagnosed with Breast Cancer I was desperate to get more information about what I was going to undergo in my near future.  I started googling learning more about my cancer.  I found this site and looked at the discussion boards which with my head buzzing in fears and anxiety was hard for me to concetrate on and navigate.  I saw there was a chat and tried it out right away and the room had chatters in it.  So I went in the chat scared to death.  When I got in there I was greeted and the ladies asked me many questions to see where I was in this jouney.  When they realized I was just dx and they could see my fears they took me under their wings and made me feel like I was in a place where someone really knew what I was feeling.  I started going into the chat everyday to learn more and more of how these wonderful ladies coped.  I was so scared and thought I will never be able to do this.  By the time I was going to my first chemo after chatting with these cancer warriors and feeling all the love they gave me and confidence, I went into my first chemo room ready.  I was like "Mike Tyson" ready for the fight!  I don't think I could have ever done that had I not met all these ladies in the chat room.  I feel closing this chat would be a very sad day for the next lady who comes to this website looking for information who will miss out on the support that I got when I came here by being able to not only read the very good information on this site but also have a group of wonderful ladies welcome them to a room full of hope.

Dx 12/23/2005, IDC, 5cm, Stage II, Grade 1, 2/10 nodes, ER+/PR+, HER2-

Feb 22, 2013 10:13PM jonemron wrote:

Dear Mods I have enjoyed the chat rooms greatly & found them and those in there very helpful. On a personal note I have made so
wonderful friendships in chat we share more then our breast cancer journeys we are more like a giant international family. Chat is there to understand and when your having a bad day to accept those feelings of fear we get and also to pull out of blues and let you know your not alone. Your own family doesn't always get it but those in chat do.

Feb 22, 2013 10:40PM JJsMominCA wrote:

Although it is true that not everyone uses the chat rooms and perhaps prefer the message boards, for those who are newly diagnosed and desperate for someone to talk to, the chat rooms are priceless.  I used the message boards in November 2012 right after my dx, and didn't receive a reply for days, and on one board, never received any kind of response.  When I discovered the chat rooms and was able to talk in real time to others who had been where I was, it was a lifesaver.  There is not always someone in chat, but perhaps providing info on the website about the time frame where there are usually chatters would be helpful.  Right now it's difficult enough for new people to even find the chat room link.  Letting them know once they find it that there is always someone in there between 6&9pm Pacific/9&12pm Eastern would be invaluable.  Doing away with the chat room because of budget constraints when it is a lifeline for so many would be atrocious.  Surely there are other ways to save money, for example, not posting "articles" that basically state the obvious (I've seen several of those), or contain information that is old and outdated (I've seen a few of those too).

Feb 23, 2013 12:00AM celia088 wrote:

Like some of the "old-time" chatters on this thread, i was a regular in the chatroom from my 2004 dx till 2006.  The chatroom was a total lifeline for me.  I did read the boards and had even entered 1 or 2 posts, but i felt quite intimidated as a newbie by the boards. For me the boards were not immediate enough for the amount of anxiety and questions that I had in the beginning.  The chat room was a life-saver for me and i have made many friends in there.  The chatters were always very open, friendly, and made everyone feel welcome.  There are always several conversations going on at once and you do learn to type fast.  You don't have to comment on every conversation at once, just the ones you want, and you do get surprisingly fast with your typing skills.  There are a lot of people who do not warm up to the boards and are really helped by the chat room environment.  The BCO chat room is the best chat room that i have ever been on, and i have tried a few bc chatrooms over the years, but none compare to BCO.

I think that an upgrade of the chatroom would be a huge, dynamic improvement for BCO's future, and would bring in many more scared newbies (males and females) who are put off at first by the more formal boards.

(Hugs to mags, GRITS, tinkermax, marlegal, lynny55, and lildee!!!!!)

"May your heart always be joyful, May your song always be sung, May you stay forever young"........Bob Dylan

Feb 23, 2013 02:04AM Musical wrote:

I tried chat a few months ago. I didn't have a good experience with it for a number of reasons and didn't stay long after a few sessions. I let it be known I was totally new to it and I wasnt a particularly fast typer. I was also trying to find my way around the chat windows and menus. I was made to feel welcome initially by most chatters and for the few times I returned. What made me leave was the inflection that I was a troll. I just let it ride, left and never went back.

I can think of things where chat would be very beneficial, but an environment that lends itself to mistrust with the result of chatters putting you on trial is not one of them. Very disappointing.

I agree with maryannecb and Stormynyte the 1st 2 posters.

CelineFlower said...

"2- Creates bonds , and allows for emotional immediate expressions. Which can be a good thing and a bad thing. "Reading pp" is vert difficult online and misunderstandings abound and lead to forum drama"

I agree.



Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)

Feb 23, 2013 02:09AM KeepingFaith69 wrote:

It's too difficult to connect. I have tried several times to no avail.
If it was easier to get to, I would use it.

Pae xo. I surrender to God and the Angels and I choose PEACE. Dx 8/16/2010, <1cm, Stage 0, Grade 3, 0/13 nodes, ER-/PR-, HER2+ Dx 12/31/2012, Stage IV, ER-/PR-, HER2+

Feb 23, 2013 02:27AM del3 wrote:

I would give them another try.  It would be great to connect with folks especially since the Yme phoen line no longer exists.

Thanks.

Feb 23, 2013 06:27AM Yayme wrote:

Hi Moderators...

I would LOVE to use the chat rooms but I am having a hard time navigating through...even signing in was confusing as my sign in did not work and I did try and thought I was doing it correctly....I really need a lesson I guess...this is a great idea that I think I would love to utilize if I could... :(

Thank you for listening....
Lisa

Feb 23, 2013 09:22AM Moderators wrote:

This is terrific information, on all fronts as we try to decide if we should upgrade (or get rid of the chat rooms)! Looks as though alot of folks would appreciate it, if it were easier to use! 

To send a Private Message to the Mods: community.breastcancer.org/mem...

Feb 23, 2013 09:46AM Yayme wrote:

Dear Moderators.....

Yes yes yes!!! I would LOVE to be able to access the Chat Rooms!!!!!! Thank you for listening!!!! Sometimes, you just need that extra special communication....

Lisa


Feb 23, 2013 11:29AM Clara_ wrote:

Dear Mods,  Please keep the chat room open.  It has been a great source of support to me and many other women and men!  To find immediate support when newly diagnosed is very helpful to everybody.  For those of us who had breast cancer a few years ago we find it very comforting to be able to express our fear of recurrence.  Once you had a cancer diagnosis there is this fear that every little pain or problem could be the sign of a new cancer.  I was sorry to read that some women did not feel "accepted" since all the oldies try to cater to the newbies and the current conversation stops immediately when a new name appears.  We immediately ask her if she has a diagnosis, what her situation is, where she is located and what she might expect.  In my experience, this is the best chat room where men and women can participate without harrassment or critisism but rather connect with others on a personal level and show their vulnerable side.  I hope you will be able to make it possible to keep the chat open, thank you.

Feb 23, 2013 02:29PM badbabe56 wrote:

Sealed I have had my mouth closed for a very long time as I cannot access chat on my laptop as I have prepaid, I have at times gone to the library and said hello to my friends. Although I have not met many in person (have some) the chat room use to be an amazing source of support, information etc and you didnt just have a half hour appt, you could ask any sort of question and usually someone would be able to help you, if not would work out how to get help. I use to go into the room as a 23 year survivor, having a 6 week old baby at my time of cancer it was invaluable to other young women to know it can be beaten, and you can have another child later and all the other bits that go with that. We still have a friendship in fb, however newbies are not going to know where to find it. Personally I think we should shout loud and clear that some of the money that we have donated to, be used for the valuable resource to stay open and work more efficiently than it currently is.

Feb 23, 2013 03:05PM cat61 wrote:

Hi Everyone,

I haven't been on here in  a very long time, I have been going through some personal challenges and find it hard to come on here. But when I heard about the possibility of the chat room being removed I thought to myself 'I need to say something". I haven't been around this site as long as some other people here but I can say that the chat room helped me out so much when I was diagnosed. It gave me something to come to to get information, guidens,comfort and somewhere I could just let go without worrying if I was being over zealous with my feelings. It was a safe haven for me. There are so many more women who will be diagnosed that will need this help as well. I hope they can figure out a way to keep it on this site.

cat61 Dx 4/17/2012, IDC, 2cm, Stage I, 0/1 nodes, ER-

Feb 23, 2013 03:45PM awb wrote:

haven't been able to get into the chat rooms in months; won't connect with the site anymore when I click on it.

anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)

Feb 24, 2013 05:34PM 83DGR45 wrote:

When I first came to breastcancer.org in 2005. I got  support from the discussion boards even though it ended up being a benign tumor.  It has changed since then, and even though I didn't think of this website until after a year from being dx, I have found the chat room to be awesome.  The women, even though we are all far apart and so many of us have never met, there is a bond there.  Even though I don't go in daily like when I first did, I try to go in when I can, everyone is just as friendly.  The best thing about the chat room, I can ask questions that aI might be embarrased to ask someone else.  

Dx 1/4/2011, IDC, 2cm, Stage II, Grade 1, 0/1 nodes, ER+/PR-

Feb 24, 2013 08:52PM arpy15 wrote:

arpy --I paniced when I read that the BCO chatroom was thinking of shutting down.  It is here that i meet with my best friends and share life with them.  I would be lost without the chat room please keep it open.  Thank you, Arpy

Feb 24, 2013 09:18PM AlwaysHope wrote:

I used chat all the time when first diagnosed. It was a lifeline. I stopped using it on a regular basis when they took away the color fonts. When we had color, it was easier to follow specific conversations since many conversations occur at once.

For instance, if I asked a question and a person responded who had selected 'blue' for their font, I could just look for the 'blue' lines to follow. Yes, others might have selected blue but it is easier to sort through five people using blue as opposed to everyone using black. Now it is all black and I have a hard time finding the conversation I'm participating in with the fast scroll. It is hard to read. It wasn't always that way.

The fonts are also hard to use. Yes, you can make it larger but is not as easy as it used to be.

I think if you spent the money to provide a USER FRIENDLY chatroom, more people would use it again.

As for the suspicious aspect, when the chat was first opened and there was no registration, the trolls were numerous and distressing.

The chatroom used to be busy 24/7. I think the fact that it is hard to use and access has made people move to the boards.

Feb 24, 2013 09:28PM thefuzzylemon wrote:

I tried to get into Chat when I first found BCO. I couldn't figure it out. I never tried again but if it were something easy-peady...maybe another option in my menu where I just press the Chat Room selection and there I am...I would use it. I think any avenue to connect with others at BCO is worth its weight in gold.

The Fuzzy Lemon (including all her personalities) Dx 1/20/2011, 2cm, Stage IIIC, Grade 3, 14/15 nodes, ER+/PR+, HER2-

Feb 24, 2013 09:38PM englishteacher wrote:

I was just diagnosed on Valentine's day, had my lumpectomy and lymph node removal 4 days ago. Found this site by googling questions about armpit pain and feel like I stumbled into heaven for a few minutes. Thank you everyone. I don't feel so alone tonight.

acceptance = peace Dx 2/14/2013, 2cm, 0/1 nodes Surgery 2/19/2013 Lumpectomy: Right; Lymph node removal: Right

Feb 24, 2013 09:44PM englishteacher wrote:

Looks like I posted this in the wrong topic. I'm a hot mess.

acceptance = peace Dx 2/14/2013, 2cm, 0/1 nodes Surgery 2/19/2013 Lumpectomy: Right; Lymph node removal: Right

Feb 24, 2013 10:08PM Rockym wrote:

Chat was invaluable to me last year.  After all my treatment was done I was falling apart at the seams.  I was able to go into the chat rooms each night and just talk it out.  I couldn't tell my family and friends what I was going through because it was too painful.  The ladies that were in the chat room understood and were non-judgemental.  It was a great place to go for immediate help and reassurance.  If I ever need to talk again, I sure hope it's available.

Just when I'm about to make ends meet, someone moves the ends. Dx 6/13/2011, IDC, 1cm, Stage IIA, Grade 1, 2/6 nodes, ER+/PR+, HER2-

Feb 25, 2013 06:46AM Yayme wrote:

Hi Ladies...

I have been trying to get on the chat but can't seem to get in....HELP....do you use your same sign in as when we log into the Boards? I read the instructions a few times but just can't get in...any ideas or can someone let me know if there is a different way to get in like changeling password or something???? :(
Lisa

Feb 25, 2013 02:34PM Musical wrote:

lelea make sure you have java installed. No java no chat. My FF version is an early one and I didn't have probs getting in. However I don't like java and have since uninstalled it so I can't try things out. Your forum PW should work. Mine did.

ALso, CHat goes from the link on the left, which after being clicked on gives you a few tips and links to do with chat. Without java, I dont think the login screen comes up at all.

HTHs

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)

Feb 25, 2013 08:22PM marthafirst wrote:

February 24, 2013

 

To: Breastcancer.org

From: Kathleen Rummell

Regarding: Chat room

Eight years ago, when I was diagnosed with breast cancer, I needed information. I searched online and found that breastcancer.org was the only site that had everything I could possibly want to know, written in plain English. I also found there was a chat room. In that room I met women who were going through the same experiences. They loved me, educated me, supported me, calmed me, and occasionally kicked my butt. I was able to make educated decisions about my medical care thanks to this informative site and the women who supported me. I have stayed with this chat room, not only because I have made life-long friends, but because I want to give back to the new people, what I received.

I have noticed over the years that the quality, reliability and most importantly, the availability of the chat room have declined. Now I am hearing that bc.org is considering not having a chat room. There are some who say the discussion boards are just as good. I would say they are not. When I need to talk with someone. When I am frightened. When I need answers. I want to talk to someone now. I don't want to leave messages and hope somebody will answer them later. We live in a technological age. That bc.org would consider eliminating the chat room because of an unwillingness to spend money to update a system is embarrassing. I would suggest that somebody there re-evaluate just what this website is for. It's for women who have breast cancer and they have emotional as well as physical needs.

Feb 25, 2013 08:46PM chrissyb wrote:

I used to visit the chat rooms often but since the total upgrade of BCO I can't find my way in anymore. Yes I go to the menu at the side of the page and click on chat room.......it comes up with a page explaining what the chat room is and only once have I been able to find the login. I keep trying..........

The old way of entering the chat rooms was so much simpler and easier to find........please, if you are thinking of upgrading, make the access easier!

Thanks Mods.

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-

Feb 26, 2013 02:34PM Mazy1959 wrote:

Mods,

In my wildest dreams, it never occurred to me that the chat rooms would close. Ever since the BCO upgrade , even regulars cant find their way in or have great difficulty. It took me several days to figure out that I needed to scroll down to access the chat sign in.  The chat rooms aren't loved by everyone but they are loved by many. I think removing chat would reduce BCO memberships. I don't want to give criticism without also offering a possible solution. I don't know all the tech stuff involved with this. But..if chat functions were messed up from the recent changes...is there no way of reversing it or making them co exist? I appreciate this site so much and this is breaking my heart. People will come looking for live support but it wont be here. Someone mentioned above about a fundraiser...I would donate. Not a lot but I would give what I could afford. Surely we can band together and somehow satisfy all of us. I'm not able to put on a fundraiser at this time but maybe someone would. I'm not copping out...I'm in palliative care and not doing so good. Please, please, please don't shut it down. There are many like me who are house bound due to weather or just plain weakness. People who are on so many meds its impossible to be out and about. The only time I leave my home is when my hubby can take me. I am not the only one in this shape. I'm not there every night but am there most nights. I'm sorry for rambling on and on but this is so important to me. Luv and hugs, Mazy

Bone marrow mets in 90% of bone marrow. Dx 3/6/2003, ILC, 3cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Dx 12/19/2006, ILC, 4cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR-, HER2- Dx 4/25/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Dx 8/4/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Chemotherapy 8/9/2012 Abraxane (albumin-bound or nab-paclitaxel)

Feb 26, 2013 02:44PM Stormynyte wrote:

I agree with the idea of upgrading the chat rooms. If they were user friendly and had rooms for different topics I would defiantly like to have real time chats. The way it is set up now I could only get in that one time and there were just way to many convos going on about so many topics for me to feel confident enough to jump in.

It can't rain forever. Dx 10/28/2011, IDC, 3cm, Stage IV, Grade 2, 4/11 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/1/2011 Surgery 5/17/2012 Mastectomy: Right Chemotherapy 11/26/2012 AC Chemotherapy 1/28/2013 Taxol (paclitaxel) Chemotherapy 2/20/2013 Taxotere (docetaxel)

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