Post your tech glitches, errors, issues, etc. here.

goldie0827

How come it shows Mods as being in Philadelphia, but does not show anyone else's location? I miss that!

MinusTwo

Yeah - I miss the locations also!!!

Anonymous

They’re still working on it!

My location now shows as “Montreal, Montreal”. It should only show Montreal once unless Montreal seceded from Quebec when I wasn’t looking. 😉

Location was set to Private with the redesign. You can set it to Public, but don’t forget to copy your signature first and paste it back in case they haven’t fixed the lost signature bug.

MinusTwo

Thanks Serenity - I think I'll just wait for all the bugs to be worked out. Or for the platform to change once again. I do love the MODS in Philly.

Moderators

Beesie, SerenitySTAT, Wrenn, Alicebastable, are you still seeing the birthdate issue?

Teka

zogo...I see yours at the bottom of your posts.

~Jane~ "Most obstacles melt away when we make up our minds to walk boldly through them" ......"You'll never know how strong you are until being strong is your only option"

MinusTwo

OK - now I'm REALLY steamed. I've spent 20 minutes trying to log out. Every thing I've tried will not take me to the option to change my personal information - or if I clicked again - to LOG OUT. It's almost 11pm here. Nothing makes me madder than to leave a site while logged on - but I really can't screw with this any longer. HELP

BTW - I have no problem confirming that I want to sign out a 2nd time. I have a real problem when I can't sign out at all.

Anonymous

Minus - I use a Private tab that automatically logs me out when I close the Safari browser tab. You can try to find the equivalent in the browser you use. I was able to click on my avatar > My account > Sign Out > Sign Out.

Mods - That’s 4 clicks to sign out. Please reduce to 2 clicks.

AliceBastable

I've erased everything in my info, including birth date, location, diagnosis, treatment, etc., and I will not re-enter any of it unless and until all the bugs are fixed.

wrenn

I am feeling like I have battered woman's syndrome for coming back here. Trust me I am not returning because of the abuser (BCO who doesn't give a flying *uck and continues to insult us with the game of "we are working on it" "will inform tech") but for the members. The sideways scrolling will mean I will be here even less frequently. Enough already.

Moderators

Wrenn, where are you seeing the "sideways scrolling"? This was an issue because another member posted an unbroken line of text, so the text was not wrapping, causing the need to horizontally scroll. We edited that post to break the text and that fixed the issue on our end. Are you seeing this somewhere else? If so, please send us a link to the thread and we will address.

And, yes, we do care.

Thank you.

AliceBastable

Let's see if there are any improvements to the FUBAR. I went back in and made sure EVERYTHING but my name and email are deleted. I once again edited my user name to capitalize the A and B. I double-checked that all diagnostic and treatment info is completely blank (except for a few stupid drop-down s that won't allow a blank 😠). Let's see what prize I get from the spinning Shit-O-Matic BCO Wheel of Misfortune!

Edited to add: not one goddamn change. Still no caps in my screen name, still no way to get rid of the damn diagnostic and treatment info. They're not working on any of this shit and I'm tired of the lies.

nopink2019

I'm MBC, but diagnosis is all screwed up. 😠 Since this is the most active topic right now, I'm posting this here. Where has everyone gone? I mean this...have you found another community forum to get info from others in same diagnosis/treatment. There is nothing much here anymore except complaints or funnies, lost the good advice and experiences.

nopink2019

Tried to delete info that was mistranslated in upgrade and can't. Can't correct either. Or show MBC diagnosis. Canct add signature to state correct info. I'd suggest ignoring all diagnosis & treatment info for everyone if you are still trying to use this site.

Spookiesmom

Nopink some people may have gone to ProBoards. It’s a great site. I’m on a thread there, for years! None of this bulhockey like BCO.

Moderators

NoPink, we get the frustration. Please know our priority is to get the profile/signature info corrected, along with the ability to edit/delete, etc. We have made some headway, but we know there is much more to do. We appreciate you!

--The Mods

Anonymous

Posting here goes against my self-care goals. 😔

AliceBastable

Gotta find ProBoards. Is it easy to navigate? Are people using the same names?

wrenn

Alice, We can set up a proboards with different threads for different topics or a general thread for daily yacking. I have been on a couple of great ones but I am old and fading memory wise to manage it. We could have a few people work on it if there is interest. Very easy to set up.

Even as a temporary place to not want to bang our heads out of frustration.

wrenn

It is very disturbing to continue to be gaslit and it's humiliating to return for more just because we are all trying to deal with a deadly illness. I agree with Serenitystat about it going against our self care goals.

After 2 months nothing much has improved and much has been made worse. Even if it suddenly improves I am really sick of the run around to be loyal any more. I don't want to give up the great members though so Proboards might be a good solution.

ETA they can be private. An admin would have to approve members (to be sure it was about breast cancer).

ThreeTree

I looked at the ProBoards site and could only find one related to breast cancer ("Visiting Friends", or "Friends Who Visit"? - something like that) and it didn't look like it had been active in quite some time. It was just a brief, cursory look, but that's what I saw. If someone could start a new one, that would be nice, but I'm sure not up to anything like that.

MinusTwo

serenitystat - Oh. I not only log out of my server but actually shut down the desktop every night - and every time I'm going to be away from the house. It appears to be working again today so I can get to my profile - if you can call a work around with 4 or 5 steps and an inordinate amount of time between each step "working".

I'd rather have 4 clicks to sign out than no options to sign out. It's sort of like a store (say Talbots who recently did this to me) recording, trapping & saving our credit card info to keep it permanently on file. Nothing make me more irritated than sites that makes determinations to override my individual privacy tolerances. And them having a credit card on file to "make it quicker" is an egregious misuse of my trust and my information.

Read an interesting snippet re: privacy. Once you sign up for accounts on line & are activated, you should go back in and delete your birthday. I understand the theory but I wonder how that would work with health care providers, who all call us up by our birthdays?

SarahMaude

treethree. Same. I looked through the Proboards platform and found a couple of that were dead or never took off. It’s kind of a Wild West. If we only have private boards, we would lose the ability to support newly diagnosed or worried people. Also, I’m so new, I don’t know that I’d be included. I really don’t want to leave I want here to work.

I agree that the traffic here has dropped so much that I’ve wondered if BreastCancer.org has considered archiving (not losing, but keeping the information searchable) the older threads and creating a temporary smaller community. The broken profiles are a very bad side effect of the reskinning, which was more like a scalping.

The energy of interaction is truly missing right now. I’m sad as I start chemo this week not to have an active online support forum. It’s kind of like searching through an abandoned city. I don’t think there is an experience I’ll have that I can’t read about in the abandoned threads, but not having live interaction is a loss. There are several wonderful women who are here often enough that I haven’t left, but we are missing the kind of back and forth banter that keeps us coming back over and over.

I believe that the moderators posting here are just as flabbergasted as we are. Seeing what was such a vibrant and active group of women just vanish must be hard for them too. I feel bad that they are the only ones we can shout at over our valid frustrations.

I believe that frank and transparent communication from the named BCO board members would be very helpful in starting to reestablish trust in what seems to be a dystopian version of a place that used to be very good. I don’t think anyone expects or needs perfection. Good enough is acceptable. The status quo is not good enough. It seems that in an attempt to renovate the architecture, someone cracked the foundation. There is a way forward. I don’t know what that is, but I truly believe that the ethical thing for BCO leadership to do is to start a real dialogue with the members here who are the life behind the coding, and data, and purpose of this not for profit charitable organization. That dialogue needs to include commitment to a plan and a schedule.

Hugs. I wish I had a magic wand. Sigh.

ThreeTree

SarahMaude - Really appreciate all of your comments. My preference too would be to see this BCO board get back on it's feet and not have to migrate anywhere else. I am also really sorry to hear how you are starting chemo with no other BCO members to go through it with. Usually there is an active group for each month that someone starts chemo, radiation, etc. Do you have any local face to face people or groups that you could find support from during your chemo? Just a thought. I don't think you can count on this board at this point. That's a real shame and I wish there was an obvious or easy solution for you.

I also agree that the moderators are unfortunately stuck on the front lines of this and have to take all of the flack. I think people's complaints are absolutely valid and legitimate and need to be strongly voiced, but it is too bad that the moderators alone have to deal with it all. I am not impressed one iota with the "higher ups" in this organization. They are the reason for this big mess to start with, and then they leave the moderators out there all on their own to take the heat. Not a good look in my book at all.

So I continue to check in once in awhile, hoping that something positive eventually happens here and that we can all get back to what we once so enjoyed and found inordinately helpful.

SarahMaude - Wishing you all the best as you go through chemo. It's no fun for sure, but as they say "doable" (I'm coming to really dislike that term, but it does describe some things pretty accurately.) Good luck!!!

SarahMaude

treethree, unfortunately in person support groups seem to have been permanently paused during the pandemic. Heck, even the in person chemo prep group for our large community treatment center is now a video I have to access via QR code. I am comfortable using them, but not everyone is, and getting trained by telephone is no substitute for a face who can answer questions and be empathetic.

I am in the Thursday BCO Zoom in treatment group. I’d really liked it so far, but this week it doubled in size, and I felt we were time pressured. My Google fu powers are strong, I’m assertive enough to ask for help, and I’m surrounded by family and friends. I’ll be okay. But I’d feel more confident with some peers. Some things just feel l more natural to discuss with others who are sharing an icky time together.

Anonymous

Minus - That's not what I meant. I use the Safari Private tab. The moment I close the tab I get logged out. If I immediately reopen a tab for here, I need to log in again. Incognito mode should work the same way, but I haven't tried it.

SarahMaude - There used to be monthly chemo groups until recently. You should go ahead and create one for April/May 2022.

Sadiesservant

Sarahmaude and others looking for support, you can try Inspire. It’s not as immediately interactive as the BCO community but is a place to ask questions and get support. There are a couple of very knowledgeable posters who stay abreast of all the cutting edge research in the field

Rah2464

Sarahmaude thank you for articulating the current situation so very well. I am truly sorry you are feeling this community loss while you are starting your chemo. I hope you will consider serenity's suggestion to start an April/May chemo thread because I bet that are others silently needing that also.

SarahMaude

I started an April/May Chemotherapy thread around 15 hours ago. It has has 4 views and zero response. I'm going to try to make it work. Those who are concerned can see that in itself as an indication of the poor health of this Community.

BCO leadership: your articles are good. Your pathology guide was extremely helpful. But having real live survivors to provide me advice, encouragement, and links to current research reshaped my treatment path for the better. Until I started reading in the community here, I didn't know that there were Breast Surgical Oncologists. I was originally referred to a general surgeon who would not have been able to remove 4 ounces of tumor and tissue nearly as seamlessly as my BSO did. Without them, I would not know anything about cold capping. I wouldn't have been able to assemble my chemo pantry, medicine cabinet, and comfort items. I wouldn't have known anyone else who would be able to laugh, cry, rage, and survive with me. This is an important resource. Please bring it back to life.

serendipity09

Mods- I did not delete my diagnosis.