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nopink2019
nopink2019 Member Posts: 384

I'm MBC, but diagnosis is all screwed up. 😠 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.

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  • moth
    moth Member Posts: 3,293
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    I've tried FB but omg it's mostly awful. I've tried a discord channel but there is a bit of an ageist vibe. I'm on IG more than I used to be and following a number of mbc peeps but it's not the same..

    I'm still here.but yeah it's pretty quiet :(

  • 50sgirl
    50sgirl Member Posts: 2,071
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    Nopink, I know what you mean. I think back to all the knowledge and support I received here when I joined almost 7 years ago, and the tone of many of the threads has definitely changed. People seem to post less often, and there are fewer people here to really form a connection with. I no longer post as often as I did, but I have not found another forum to join. I think that some people moved to Facebook a few years back. We did seem to lose several key people back-to-back. It just seemed that they were dying one after the other.That was hard for some of us, and I, for one, withdrew to escape the pain. I hope you find what you need and are looking for.

    Hugs and prayers from, Lynne


  • parakeetsrule
    parakeetsrule Member Posts: 605
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    I'm in a few Facebook groups. People have moved away from forums like this over the last few years. Everybody's on apps that are easier to use on phones. This site is a pain in the butt on my phone and I definitely use it less than before. Another thing I like about the Facebook groups is that they are private groups. I'm using my real name in them but the only people who see what I say are group members. I don't share as much as I'd like here because everything is totally public. Literally anyone can see it. If I shared as much as I wanted it wouldn't be hard for someone to figure out who I was.

    A lot of people are also on Instagram. Probably TikTok too but I'm too old for that. Lol

    I was watching a presentation at work this week by a company running a nationwide website. It wasn't related to cancer but one piece of information was very telling. They said 75% of their users were accessing the site on mobile phones. At first I was shocked and then I remembered how I sometimes go a week without even cracking open my laptop!

    Everything is mobile now. Breast cancer.org really needs a mobile app...

  • spookiesmom
    spookiesmom Member Posts: 8,171
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    I'm always on my phone, used to work well before BCO got stupid with the downgrade. I don't have a compor laptop or iPad. Just my phone.

  • aprilgirl1
    aprilgirl1 Member Posts: 757
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    I'm still here! Moth andParakeets, good to know about your experience in fb groups - I feel like it's so public, even in a private group because you are using your real name but - is anything truly private anymore ?

    I have tried a different online support but although it's MBC it's not as specific . No variety of threads for specific treatment plans, MBC type of breast cancer or location of tumors . I like this one the best. However, the website change seemed to really drive some good people away (and a few have died which is so very sad ). Edited to add: healthunlocked / MBC is the other online group I joined , mainly due to the issues when this site was "out of commission ".

  • sunshine99
    sunshine99 Member Posts: 2,593
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    I'm here, too. I mostly check BCO on my PC, but sometimes I'll check it on my phone, too. I went back on FB after being off since the election before this last one. Couldn't stand the politics. I am on IG. My main reason for going back on FB was to share my blog. It's actually been fun to catch up with old classmates, friends who worked with me at summer camp, and so forth. What I can't get is how OLD some of my classmates look. Know what I mean?

    Carol

  • moth
    moth Member Posts: 3,293
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    If anyone wants to exchange ph numbers, email etc pls pm me. Telegram, WhatsApp, discord etc. I have them all....

    I'm in 2 fb groups which I'd consider actually useful but they're pretty quiet & I miss being able to check in & chat regularly. The others are just totally not to my taste. Very little science, tons of just silly memes and prayers; and heaven forbid you mention statistics. I think I will be leaving them soon because they just frustrate me more than anything

  • candy-678
    candy-678 Member Posts: 4,088
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    I am still here. I am not techy. I use a PC to get on here, not a phone. I do not do IG, Twitter, etc etc. I am on FB, but I like the anonymity of here. I think I can post what I really feel without you knowing me. We have lost a lot of members here due to death. But losing others to the messed up site is sad.

  • elderberry
    elderberry Member Posts: 1,058
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    I am still here. Lurking. Posting. The messed up upgrade was a turn off. I don't "do" FB and now that Musk has Twitter all to himself I will definitely not be signing up. The loss of some long term members has been crushing. Then there is the wondering where others have gone. Just vanished. Okay? NEAD? Dead? The BCO site was a life line for me in the early days of my DX. I hunted for hope, for inspiration, a place to share my fears.

    I hope to see familiar names again.


  • Rosie24
    Rosie24 Member Posts: 1,026
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    I’m still here. I’m on a few BC related FB pages too but they tend to have not much activity. I’ve started adding more threads here as favorites so I have more to read. I’ve gotten used to the site update for the most part, even the couple seconds delay in loading new pages. No delay would be even better!

  • tina2
    tina2 Member Posts: 757
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    I'm still here and happy to see some familiar names above.

    I used to check this site regularly, just to see if someone had a tip or needed a boost or just wanted to gripe or share a laugh. I still try to, but find doing so terribly discouraging. The mess of the ongoing technical glitches has caused familiar folks to drop out or give up. And I'll never share health information on Facebook, no matter what assurances they provide.

    Over the years some of the good friends I've met on this site have died. I miss them. Clicking with more than one or two new confidants seems newly difficult, maybe because of the site problems or because I have nothing new to say or give.

    Sadly,

    Tina



  • sunshine99
    sunshine99 Member Posts: 2,593
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    tina2, Iwas happy to see your name under "recent posts" - or whatever it's called. Yes, this site is frustrating at times, but I can't stay away.

    By the way, your avatar makes me smile!

    Carol :)


  • tina2
    tina2 Member Posts: 757
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    Happy to know that, Sunshine. Thanks!

    Tina

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,761
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    hi tina,

    Good to “see" you! I experienced some frustrations with the new format but have slowly worked through things. I haven't been posting much as I've essentially run out of things to say. I can't provide much support since I've traveled an unusual stage IV road and my tx hasn't changed in 10 years and pre-dates Ibrance, Verzenio or Kisqali. I feel as if I have nothing to offer . Take care.

  • Partyoffive
    Partyoffive Member Posts: 53
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    hi nopink

    I’ve been on this site for 9 yrs mbc from the get go and over the years the site has had its ups and downs some times it’s way more active then others I’m not a huge poster but did come on quite a bit for info and to see how everyone was but it has been very quiet I’m also on Piqray which seems to be a fairly dead thread my hospital has a mbc support group so that’s where I’ve been getting info etc. unfortunately I’m the only one on Piqray and based on recent problems I’ve had with it I may be moving on. I tried FB did not like it and inspire but will continue to check in here.

    Kristin

  • olma61
    olma61 Member Posts: 1,016
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    I have been visiting this site a lot less, it is just too hard to use now. slow loads, timeouts, I dont have the patience. I read some of the tweets of the oncology professionals on twitter and watch youtube videos. There is one MBC FB group I might join but I hesitate because I do not like airing my health issues on FB either. Bad enough my sister and I got stalked with adware after using FB messenger to talk about breast cancer.


    I've been busy with a lot of personal things too, so spending less time online in total.

  • snow-drop
    snow-drop Member Posts: 519
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    I am here too! But checking less than before for all reasons (technical slowdown issues) you all mentioned. I did take a couple of months break as I was so busy with personal issues, logged back in when one of my very nice virtual friend from here messaged me asking how am I doing, that means a world to me. I bonded with this forum and you wonderful ladies, we all understand each other and it is the only place I can post my feelings, fears, ups and downs and get honest support. I deleted my fb account several years ago. Another reason why I joined here is to keep my privacy and receive accurate information and science based discussion when I need…

    If we know our old friends here and they haven’t been active, I think we can message them and let them know the board is working, just an idea.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Also still here but don't post as often. There just isn't the same vibe and posts by others are few and far between. Some of the most knowledgeable members are not very active if at all.

    I also find the ridiculous number of pages of threads unhelpful. I was a proponent of having threads show up for more than 24 hours but the current situation is unmanageable. As a result, I think I often miss new threads asking for advice/support. I used to spend a lot of time here but now find I pop in and out a couple of times a day usually on my iPad. I’m old (well 60 but my eyes aren’t working the way they did when I was 30) so phone just seems too small.

    Moth made some suggestions to me when things went off the rails but I just couldn’t bring myself to do FB. I do want to join the Zoom calls if i can get it to fit my schedule but need to test my technology as I recently medically retired so don’t have my work computer which had a built in camera

  • dancemom
    dancemom Member Posts: 404
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    I'm pretty new. This de novo thing is bizarre, so I am mostly complaining on specific threads- currently radiation, and always covid. I really appreciate reading about all the various experiences. This is actually has been my first foray into any type of social media, believe it or not. The whole concept freaks me out, but there is so much here I took the dive.

  • seeq
    seeq Member Posts: 1,084
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    I'm still here. My situation has been pretty stable and I haven't felt like I had a lot to offer.

    I haven't had any problems loading pages for a long time. I mostly use a tablet, and the appearance in portrait mode is still good. The problem with the profiles, history, etc. Is still a bummer.

    I think traffic has been picking up, but I do miss some of the great researchers we have here. I also wonder if the problems with the site coinciding with the arrival of spring weather has caused some to take a break. It's good to step back and enjoy where we can, so I hope that's part of it.

  • sondraf
    sondraf Member Posts: 1,582
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    I migrated a bit over to Reddit as its a more active "younger" user base over there, though in more of a supporting capacity than actually airing my issues. Also checking in on a few more UK forums, although I don't post nearly as much on those. I refuse to use Facebook.

    A lot of things coincided at the time of the site migration - I really needed space after Rabbit passed and when I was ready to come back I had the drug and rads shuffle going on and didn't have time to tolerate the slow loading times. It feels like the last six months have been non-stop BC that the last thing I wanted to do was wait to read/engage more with... BC.

    I do really miss cure-ious, though - her posts always gave me such a lift. Also, why are there so many pinned threads on the Stage IV page? You scroll all the way down to see the first thread!

  • divinemrsm
    divinemrsm Member Posts: 6,008
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    Thank you, nopink, for this thread. I still pop in to the forum but the changes have altered my involvement. All the frustrations that others have mentioned on this thread are ones that keep me from fully engaging here at this time.

    There have been numerous times over the years I’ve joined bc Facebook groups and I really do not care for them. It has a much different dynamic than this forum.

    If I give myself time to think about it, I can feel pretty angry at the botched attempt to upgrade bc dot org forums. But they don’t care. It still is beyond irritating that we were given no prior notice of the new unveiling. It’s like we were all driving on this main artery to get to where we needed to go when suddenly road blocks and traffic pattern changes came out of nowhere. Now many of us must take long detours to get to where we want to be only to find more road blocks and some of the business we want to attend to has dried up.


    It’s just one more thing in my life where the rug’s been pulled out from under me. Foolish me for placing any kind of trust in the forum.
    I could say more, but what’s the point?


  • sondraf
    sondraf Member Posts: 1,582
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    To be fair they were porting a LOT of old content and a very old code base onto new servers while also upgrading the front end and I guess making it more mobile friendly? I think they tried to do too much all at once, with little warning, and the whole thing went tits up (to use a phrase! haha) and we are left with this semi-functioning situation. I've seen other forums port in the past (and Macmillan here in the UK did a refresh at roughly the same time - my mind was so blown for a few weeks!) and its a multi-stage process to ensure everything is backed up and there is little interruption. You may see little new tweaks here, a new font there, etc but not everything all at once!

    Im still having difficulty reading the site as well - something about the font and all the white and black makes it unwelcoming to engage.


  • moth
    moth Member Posts: 3,293
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    just waving hello..ESMO is on, I didnt sign up to attend virtually but I know some people who did & will try to post any interesting things

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Hey Moth. Thanks for keeping an eye out. Question, did you fix your diagnosis section? I’ve been afraid to touch mine but would really like it to reflect the treatments accurately (although must admit that it is making for a very longgg list). I just posted on the tech glitch thread about prioritizing this as it annoys me that most standard chemos are showing up as other.

  • ninetwelve
    ninetwelve Member Posts: 328
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    I'm still popping in, too, but it feels (and looks) different here. Mostly I've posted in the forums that were treatment-specific, but I find myself alone in the Weekly Taxol for Stage IV group, so I just check in to see what's new and then get out again. I've missed the support and the socializing. I hope the site picks up again, although I don't exactly want it to get any more new members, if you know what I mean.

  • cowgal
    cowgal Member Posts: 625
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    I am still here. I guess I am low tech and still prefer a forum to a Facebook group and I don't do other social media. This site has been pretty frustrating since they did the upgrades but I don't really know where else I would go. I am still waiting for that Zoom support group to be at a time that will work for some of us that are still working.

  • moth
    moth Member Posts: 3,293
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    sadie, I haven't changed my dx or tx section so what's showing is what the system has ... I tried going in to change things but it won't let me do that for the treatments section. It's weird - it just wants me to add treatments & won't show me the ones I already have added, even tho they show in my sigline. I agree with you that this should be a priority. I'm on a msg board which doesn't have dx & tx siglines & it's really annoying to not have that info. For that matter, that's one of the issues with fb groups - you have to constantly repeat things about yourself & you have no idea about the history of the person you're talking to.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    It's bizarre and so random how the upgrade impacted our treatment profiles. While I don't like the witch hunt approach, this is getting ridiculous.

    Edited to add… hallelujah, my information is now correctly displayed!

  • tangandchris
    tangandchris Member Posts: 934
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    I have not posted regularly in a long time. During my first dx and treatment days I "lived" here. I stepped away a few years back after losing people. I've tried to engage again now that I'm metastatic and it doesn't feel the same. Now the forum has literally changed so it all just feels weird.

    I post and read on some FB groups and have found one on particular very helpful. But even those groups can be too much for me because there are many using it to unload all their anxiety, anger, fear. Not saying I haven't done same at times, but can harsh daily.