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

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

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Posted on: Feb 21, 2013 09:11PM

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 4 of 5 (129 results)

Posts 91 - 120 (129 total)

Mar 12, 2013 11:14PM ReneeinOH wrote:

I haven't been able to access chat rooms--I get kicked to some website page.  I did look for that opportunity in the beginning (and was disappointed that I couldn't access)--when you are feeling so anxious and want to talk this out with others, especially those that have direct experience, that is quite a life line.  The boards have served this purpose too, but you can't count on immediate response.  Plus, it takes a new person a little while on how best to "operate" the boards (find communities, information, follow topics, etc.).  Have a place where people are "live" is a wonderful thing to offer, if affordable.  And, if you upgrade, you'll probably see more participation (with the assumption that more will be able to access).

Age 45 when dx; Oncotype score 11; Zoladex, Tamoxifen, Zometa. "Above all, be the heroine of your life, not the victim."~Nora Ephron Dx 1/4/2013, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/25/2013 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 8/9/2013 Reconstruction (left)

Mar 13, 2013 04:31AM Moderators wrote:

Thank you for all your insights! We're learning more about what chat means to this community with every post - whether you're there every evening, or if you've never been able to access the chat rooms.

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

Mar 15, 2013 10:00PM sedosa wrote:

The BCO chat room saved me. I live alone in a small town. When I was diagnosed I knew nothing.  The kind ladies in chat accompanied me every step of the way-- though the masectomy, infections, more surgery, more infections, chemo, radiation, and the death of my sis who was diagnosed the same day as I.  Because of the generousity of some members who have hosted reunions, I have had the pleasure of meeting many of the names in real life and have made some enduring friendships. Many of us who don't come in too often have shared the idea of contributing to the cost of the new software.  Could you please give us a goal so that we can earmark our contributions?  I want to see this chat room continue to remain open so that others who arrive frightened and confused can have the opportunity to speak with real people.

Learn a new language and get a new soul Dx 12/27/2006, IDC, 2cm, Stage IIIA, Grade 3, 7/11 nodes, mets, ER+/PR+, HER2+

Mar 16, 2013 12:23AM marlegal wrote:

I feel the need to point something out ... the last post I read, from Sedosa, is from a woman who is retired and living on a very, very fixed income. She was a teacher. She gave her professional life to helping children, and still does. She lives in Montana and many times has to shovel her own snow because there is no one around to do it for free, and she doesn't want to be a spendthrift and pay someone to shovel the snow - from her roof!!! But, this woman is willing to donate money to a fund to keep the chat room alive. I mean, seriously, do we need to say more about how important we think this room is to women who are faced with a diagnosis of breast cancer? Personally, I think that last post said it all.

Thank you. (and Seddy, if you're reading this, I love you)

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

Mar 17, 2013 05:45PM Moderators wrote:

HI All, 

We are really not ignoring you!! We promise!! 

We are trying to estimate the cost of updating, and improving the chat rooms, and that is taking a bit of time. When we get that (this week, we hope!), we'll see how and if we can pay for it (-:

Sorry, and thanks for your feedback, and patience!
Best, 

The Mods

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

Mar 21, 2013 09:19PM djls wrote:

I realized another wonderful thing about the chat room.  A stage 4 woman who used to come in stopped by.  We asked how she was doing and she just found out that someone very close to her is dying of lung cancer and she just needed people to talk to and be with her for a little while.  We were able to chat and listen on the spot.  That's something the discussion boards can't do. I'm so glad we had the opportunity to give her some little bit of comfort.

Dx 3/9/2011, IDC, 4cm, Stage IIIB, Grade 2, 0/2 nodes, ER+/PR+, HER2-

Mar 22, 2013 10:04PM marlegal wrote:

Good point DJ. Another thing along those lines - we have a lot of caregivers who come into chat. Unfortunately, sometimes their loved one dies, but they will continue to come in months/years later to bring us up-to-date on their lives. Some remarry, some will update us on their kids lives, some still need support dealing with their loss. But in all cases, they know that they can come to chat because there will inevitably be some "oldies" there who remember them and welcome them, and tell their story to the new people in the room so that everyone present will share in whatever it is that they might be feeling that day.

Just another example of how broad spectrum the help is from this room. It welcomes "newbies" and gives advice and an ear, it unites old friends who can just share the ongoing craziness which cancer leaves you with, and it is - in a word - home for many of us to stay in touch with loved ones.

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

Mar 28, 2013 04:53PM raysnbucs wrote:

I was actually given a script by my BS for this site, and she told me, "The chatroom can be a great help." Though I really don't talk a lot, in it, I will say it has been. The women there have been wonderful, and oh so helpful when needed. They share their experiences, which help, because I have never known anyone male or female who has had breast cancer. Please don't take it down, but I also agree that the ablity to make a room would be wonderful. 

"My precious, precious child. I love you, and I would never, never leave you during your times of trial and suffering. When you saw only one set of footprints, It was then that I carried you." Footprints poem - Mets to bone in spine Dx 2/13/2013, DCIS, <1cm, Stage 0, Grade 3, ER+/PR+ Dx 3/20/2013, IDC, 1cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Hormonal Therapy 4/4/2013 Radiation Therapy 5/1/2013 3DCRT: Bone Surgery 5/28/2013 Prophylactic ovary removal Chemotherapy 6/13/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 10/30/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left

Apr 14, 2013 04:31PM SoCalLisa wrote:

I can't believe it takes this long to tell us how much money is involved in having a chat room...

kinda loses interest

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years

Apr 14, 2013 08:51PM Moderators wrote:

SoCalLisa, we're surprised too! We'll continue to press for the numbers.

• The Mods

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

Apr 16, 2013 01:22PM Moderators wrote:

So, crazy as it sounds, the tech team estimates $9,500 replace the existing functionality of the chat rooms. Ugh. Doesn't mean it won't happen, just that it is costly, and that we're going to need to raise the funds! 

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

Apr 16, 2013 01:23PM LizLemon wrote:

I have a Mac, and the chat room thingee doesn't seem to like that, so I can't get it, though I would desperately love to have a real time conversation with others.



Mets to lungs and bones dx 10/18/12, Endometrial Stromal Sarcoma dx 5/16/13 Dx 3/31/2000, IDC, 1cm, Stage IIA, Grade 3, 2/22 nodes, ER+/PR+ Surgery 4/6/2000 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 5/3/2000 AC + T (Taxol) Hormonal Therapy 9/18/2000 Radiation Therapy 10/1/2000 Breast Surgery 10/24/2004 Reconstruction (left): DIEP flap Surgery 2/15/2005 Reconstruction (left): Nipple reconstruction Dx 10/18/2012, IDC, Stage IV, metastasized to bone/lungs, mets, ER+/PR+, HER2- Hormonal Therapy 10/24/2012 Chemotherapy 11/2/2012 Xeloda (capecitabine)

Apr 16, 2013 01:30PM SoCalLisa wrote:

there is an aplet for java plugin for chat..I can get in through safari

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years

Apr 16, 2013 01:57PM Moderators wrote:

We are also working on getting this price lower, as we speak, knowing how important it is!

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

Apr 16, 2013 04:18PM NickyJ wrote:

Wow! The opinion is quite divided, but it seems to me that the chat rooms are practically essential for those who use them. I'm a newbie, I've posted a few times, but like some others I've never been able to access the chat rooms. Have tried on the computer on a few occasions ( usually use my phone for the threads) but never had any luck

Nicky

Nicky, stage IV from the get go, mets to liver, sternum, spine, left shoulder and left hip Dx 8/9/2012, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Targeted Therapy 8/29/2012 Herceptin (trastuzumab) Chemotherapy 8/29/2012 Taxol (paclitaxel) Radiation Therapy 12/28/2012 Bone Hormonal Therapy 2/25/2013 Hormonal Therapy 1/28/2014 Faslodex (fulvestrant)

Apr 16, 2013 05:12PM Moderators wrote:

LizLemon, just as SoCalLisa says, with my Mac I could only get to chat with Safari; Firefox wouldn't let me connect at all. Unfortunately, when I got a new Mac even with Safari I couldn't chat (the current chat software needs to be upgraded to get around a bug in Java 7 that the new 'puter came with). So it's back to my old Mac to chat.

• Mod Judith

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Apr 16, 2013 06:21PM Musical wrote:

I posted some ways back and just want to re-iterate, Chat would be so much better for those who need it if there were certain features added.

I think individual rooms dedicated to a particular subject,  as well as "open" room/s available on an as needed basis for more transient subject matter would be well worth considering if it was doable.

Mods that price is OBSCENE!!!  $9.500?  Can we ask you to give us a run down on what features this would give the chat feature?

I could get onto chat no probs at all with my old non updated Windoze XP box, including but not limited to FF 3.5 which for certain reasons I didn't want to upgrade because I liked the structure of its Cache. I forgt to try my G4 on chat when this thread was new. That has Safari and FF and since Java on Macs is supposed to be tightly woven into the OS, I wouldn't uninstall it like I have my peecee.

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

Apr 16, 2013 08:34PM Moderators wrote:

Musical, we don't have a rundown on features, and we have asked for more details. We'll keep everyone posted when we know more.

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

May 24, 2013 11:02PM marlegal wrote:

Hi Mods. More and more women are commenting on Facebook that they can't get into chat anymore. So sad because some are newbies. Equally sad are the old friends I haven't seen for a while who see on FB that many are still chatting and want to come in, but cant'

The final straw was that I tried to go in tonight on a computer we only use when travelling and I can't get in either. Not that I'm any more or less important than anyone else having trouble getting to the site, but I have a bigger mouth! I updated the latest Java and the BCO site said it was refreshing, but no login/password screen comes up. Just the Java symbol spinning around and around ... which is what lots of others have complained of.

Any update on what BCO has planned to fix this problem? My heart breaks thinking that this is just a way of phasing out chat. Ironic since more and more people got interested in chat because of it being talked about on FB, but couldn't see for themselves what we all find so wonderful about it!

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

May 25, 2013 04:07AM Moderators wrote:

marlegal, we are sorry for the delay in addressing the needed upgrade to chat, and we recognize its importance to you, and to the overall BCO community. The technical team does have plans to implement changes, but we don't yet have a timetable for those changes.

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

Aug 10, 2013 10:08PM marlegal wrote:

Hi Mods. Any update for us? More and moreI find women on FB saying how they wish they could take advantage of chat but can't get in for one reason or another, especially on iPads. And some of these are newly dx'd women looking for the resource that's listed on BCO's website. I shudder to think what I would have done without access to the chat rooms and it makes me very sad to know that others aren't able to reap the benefits I did.

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

Aug 11, 2013 11:34AM Moderators wrote:

Marlegal, we wish we had an update for you and all the chatters and would-be chatters, but so far we still don't have a timetable for upgrades.

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

Aug 11, 2013 12:13PM marlegal wrote:

I'm very sorry to hear that. There are many who have expressed the opinion that the Chat Rooms have gotten lost in the expansion by BCO and would just be left to fade away. I have always tried to counter those sentiments by saying I was sure the problems were being investigated vigorously. I'm starting to think my optimism was not grounded in fact and that just makes me sad.

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

Aug 11, 2013 10:48PM SoCalLisa wrote:

Wow it has been six months now...no end in sight...

the chat room should also be highlighted on the top...

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years

Sep 11, 2013 08:30AM Patty7 wrote:

I need chat so very badly. I am lonely and very isolated. It truly helps to talk to my sisters that are going through this too. I have tried so many times to get in.

Love,

Patty





































Sep 11, 2013 04:34PM SoCalLisa wrote:

try to get in on internet explorer ..you need java...

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years

Oct 19, 2013 08:34PM marlegal wrote:

Moderators, any update? We are losing so many women who want our help, it breaks my heart. We're not just losing them in chat, it turns them off to BCO all together. Hurts that they might get wrong info and answers, not to mention they aren't able to share the feeling of community this organization was built upon, but which is seriously suffering. You know I have deep ties with BCO, and I still sing your praises, but it's hard to defend what seems to be a total lack of interest on BCO's part in making the chat rooms accessible.

Mary

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

Oct 19, 2013 08:51PM Moderators wrote:

Mary, I wish we could report progress, but unfortunately there is nothing new to tell you about updates to chat at this time. We appreciate your concern for the chatters and potential chatters who can't access this resource, and it will be raised once again.

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

Oct 19, 2013 11:22PM marlegal wrote:

Well, I guess I've been a pollyanna, believing that anything at all was being done to upgrade chat, since that is what we were originally told. Obviously nothing is being done or it would have been fixed by now. Even with members offering to offset the cost. I'm 58 yrs old and still feel sad when it turns out I've believed in people without cause. Not trying for drama, just so disappointed.

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

Oct 20, 2013 06:41AM SoCalLisa wrote:

and so It goes

Biography: DX 11/2000 LCIS,DCIS,IDC 2B, Grade 1, ER+,PR+ Her2Neg 1 pos node Lumptectomy, CMF chemo X 6 mos, DX 8/2001, IDC same breast--Mastectomy , Left Breast Lumpectomy... Tamoxifen, one year...Armidex, Four years

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