Questions

banditwalker

Why is it that when I go to "questions" up top the newest ones are 4 months ago? Did the whole set up change after Greg passed?

cak61

That's what I see as well.
I don't think anyone is monitoring this site like Greg did.

PaulineJ

In my inbox>I see the digest still comes from Greg>What Next greg@whatnext.com)
I don't tthink it changed since ,Greg passed

PaulineJ

They won't show the address greg @ what next.com

MarcieB

We have been complaining about this for at least six months, maybe more. It has certainly NOT been the same since Greg passed and so many regular contributors have dropped away because of it. Apparently, someone called Colby is supposed to be monitoring, but, evidently he is unable to fix the *Questions* snafu and it's not like we haven't asked (begged) him to do something! As it stands, we can only see your question if it is announced on our Daily Digest - IF we even get a Daily Digest. From Pauline's answer, I guess she does, but it is not consistent for me. So many of us have tried to keep this site going because we know how important it is for newcomers, and all of us survivors, but we are frustrated with the Questions thing. I think most of us have just given up. At this point, most of us question whether or not Colby, or that Dave Waz person are even real?

PaulineJ

It's never been the same since Greg.I sure miss him.He was the best>loving caring,patient etc.

PaulineJ

Marcie Like you said :It seems like this place is not real anymore lol

PaulineJ

I just got an email from banditwalker liked my answer,but it doesn.t show up on this page.Strange.! My like on Marcie showed up here
though.

banditwalker

I realize things haven't been the same since Greg but was just wondering if everyone was having the same problem or if it was just me. I am getting the daily digest every day.

PaulineJ

It just seems to be all new (few)people here now.Except sometimes I still see a couple of us old people (I don't mean you're old ) I mean old here.Please don't take offense to the word old.
I'm old both ways,but I didn't mean any of you are old other than being here for a long time ago.

Bug

banditwalker, as MarcieB said, several of us have inquired about the "Questions" page issue to no avail. I've written to both Colby and Dave Waz. Some of us are still hanging in there, though, trying to keep things going. I am not here as often as I've got my hands full as a full time caregiver now but I pop in when I can. I sure miss the way the site used to be.

Carool

I too miss our site of Greg’s time and effort. It’s shameful how the mods have let it lapse. I realize they themselves are probably struggling, but they could give us at least a heads-up about whether or not WN will be attended to. Gnashing my remaining teeth.

Ashera

I have been SO worn down just trying to navigate to anyone's current anything that...sadly I just don't try much anymore. I know that if I post a question - I'll never see back and forth answers and get notice in my mailbox that someone answered. There was a time when I didn't even GET the weekly digest. (This is a vent ladies, sorry)

One thing I am truly, madly, deeply sick of - is that every digest has that never ending list of blog entries - reads like my JAMA updates or some other site. I do not want to read them, I don't want them to be front and center, They are driving me crazy. Maybe just one small notice...that says - "Hey, new blogs are in!" I'm being petty - it's just one person that's hitting me this way, and they have zero responses to their blogs. Just.please.stop.posting them.

I've had things I've wanted to ask - share - worries I've needed soothing on - you know, like it was before. Where I can respond and also be responded...to. It's gone.

Like on Wednesday, I'm having a consult with a plastic surgeon, who specializes in reconstruction. I'm now 6 yrs out and miserable with the results of who my cancer breast changed compared to my other. I almost want both gone. But at the very least, short of living like this forever - is reducing the size of my regular breast to match the much, much small cancer breast. I'm apprehensive - once again to stand naked in front of someone and disassociate fromself. Brings all kinds of feelings back. And I've no money - and unsure if insurance covers this? Questions - questions I used to be able to share.

Sorry - I know we all feel the loss of Greg. I'm wondering just who these people are that say they've got this site. And I wonder if we truly can manage it on our own.

Love to all - Pamela

MarcieB

Ashera, I agree with everything you have said, except the part about the blogs. I just scan them to see if there is anything interesting to me and then I will try to track it down - my problem is, it is difficult to find the referenced article. (!)

Like Carool, I wish the *powers that be* would at least come here and explain the problem to us? Obviously, Greg was the one who kept things running smoothy for us - and he did it even when he was very ill and probably feeling like Hell! (I'm going to get the triple X here, right? You all know what I mean) I don't understand why it worked for a while after we lost Greg, and then slowly began to disentigrate? I get the Daily Digest occasionally. If it comes out every day, it doesn't always come to me. (?) And, of course, the Questions snafu is ridiculous.We have begged, sweet-talked, cajoled, and outright insulted the monitors, but nothing works. I know of one who tried to help us set up another place to talk and it seems SHE heard form them! I just don't understand, and I think we are owed an explanation, we have supported this site for so long.

Ashera, as far as your upcoming surgery, I think you will be fine. I had that very thing done last November. I have to admit I was surprised by all the stitches...(more cutting than I thought), but it healed beautifully and I am SO glad I did it. The ironic thing is - I had my right breast reduced to match my left, and now my left breast has filled out some and is actually larger. Aaauurrgghh! I don't suppose anyone is *even* anyway? The bottom line is; I feel so much better in my clothes. My insurance covered it and it is my understanding that most insurance will cover it for previous cancer patients.

If you want to talk to me more about it, feel free to write on my wall? I am sometimes notified when that happens - not always. Meanwhile, I am off later today for an art retreat, so I will check here Friday when I am home again.

Ashera

Marcie - thanks so much! I do remember now you went through similar - and Wed's appt is only for a consult. This is a surgeon an hour away, who comes here once a month for consults. He is also not in my 'network' insurance wise - but I'm thinking that won't make a difference. I understand from others - his office has all the answers. Mainly what I'm concerned about - is being able to navigate the surgery alone. Was yours a day surgery? I know I won't be able to drive afterward, the same day, And in talking with his office, on referral from my sweet oncologist - they said sometimes a one night stay based on what is needed. I know you won't have the answers for my particular situation, but it's encouraging you're happy. I no that breasts often are not uniform in size but I'd like to even be within crawling distance of a soft bra that might fit! To have several inches between the height of one nipple from the other through a shirt ....well if I can change that - I will.

And yay! I did get notice in my email that 'an answer had been posted'. Thanks for your reply!! And I'll try to exhibit more patience/grace and skim the blogs or ignore them entirely. It just used to be that section was filled with so many different posts from names we recognized. Guess this went the way of questions...

Bug

You can vent anytime, Ashera. That's one of the reasons we're here.

I'm over the blog entries as well. That's partly because when you go to the poster's page there is no information about the poster so I don't have an idea of the veracity of what they are posting and partly because, as MarcieB said, sometimes it's difficult to even find the article.

Ashera, I hate the fact that you've had worries and can't reach us. I hate that that's happening for everyone. Good luck at the consultation on Wednesday. Please let us know how it goes, if it helped answer questions and addresses your concerns, etc. Maybe you could come back to this thread or post a question - which we know we won't be notified about - but those of us on this thread can go to your wall and look for it.

I'm one of the folks who wrote to Colby and to Dave Waz. No response from either of them. I've brainstormed about how to get around the "Questions" problem but haven't come up with anything.

Hugs to everyone.

petieagnor

I agree with all of you. I had surgery on 10/12 so I've not been following anything much. New members aren't going to stay around much & we need them so that those of us with experience can help them as we were helped. This is just SAD.
I've never taken full use of the website & navigation was always my problem. I'm still working on answering the smart phone that everyone keeps telling me it will come eventually. I'm up to 18 minutes a day usage. LOL That is my humor for the day.

KB2013

I don’t know how I landed on this page, by accident for sure because when I click on ‘Questions’, I only see ancient history, four months old and more. In my Digest, I see a newcomer but, that person didn’t post anything aside from their diagnosis and didn’t reply to another poster who answered them so, is the newcomer real?
Is anyone else having trouble navigating the site? I’d like to know what’s up at What’s Next before I stop visiting completely.

Carool

I agree with all of you. Ashera (Pamela), I agree with Bug: We are free to rant here when we need to.

As for that blogger, I’ve blocked her, after I responded to something she’d requested re my experience as a breast cancer survivor, and she never even acknowledged my response. I’ve blocked only one other person in all my years on WN.

Pamela, good luck on Wednesday. Please update us when you feel like it.

petiragnor, I hope your recovery goes well. And enjoy that phone!

Bug

Ashera, how did your appointment go?

Ashera

Bug - thanks for remembering.
I really liked the Dr. Humorous, kind, no-nonsense. I really, really didn't like getting naked to my socks with yet another person with wine and dinner first AND....having 8 pictures taken!
Supposedly from my shoulders down...uh-huh!
Waiting on insurance approval. He said it should be covered.
Plan is to make my football real breast way smaller, and on the cancer breast remove the hardness inside due to radiation - and lift both. Hoping for very small, even, maybe B's? Diagram of a weird incision for each nipple - like an upside down M - which takes the nipple higher and creates "symetry"? Drains, maybe/maybe not. Day surgery but must have a person with coming, waiting, going. I've got to work on that one. It's an hour away - the one person I'm close to here - cannot leave her hospice husband that long. I've got time to figure it out, he said probably Feb the soonest. I also live in MN - far north MN - and it's now winter...just had first 4" snow this weekend. I'll keep ya'll posted. First hurdle is insurance - as this surgery and Dr are 'out of my network' - but I'm thinking any reconstructive surgery after cancer has to be cancer.

Ashera

PS...Lol - about getting naked...
Without....being wined and dined first!

Carool

Ashera, lol!

Glad you liked the doctor, and I wish you good luck with your insurance.

MarcieB

Ashera, I do not understand why you had to get naked to your socks? (!) They are only working from the waist up, right? I had to have photos too, but I was clothed from the waist down and I had a woman photographer - who understood and worked quickly. I did not need a drain, but I only had the one side done. I hope everything goes smooth! It's a hassle to go through, but I think it is worth it.

Ashera

I had a wonderful women photographer as well - they wanted shots down past my hips and at that - everthing fell down to my ankles anyway. She explained that sometimes, they'll take fat from belly or other areas to use in reconstruction. I get that. Probably just overkill on her part as Dr. didn't mention needing to go that direction. And all weekend I've been wondering if 'Hey, I'm under anesthesia anyway - and operating suite is being paid for - so why couldn't he just fit in a tummy tuck too?!' Probably could for a whole bunch of real money! Hoping this week I hear from his assistant that she got the go-ahead from Ucare.

ImWorthIt

Glad to see some chitchat here. Ashera, I was thinking "Wow, that's quite a nice doctor to give you wine and dinner" and then I saw your following-without wine and dine. LOL Oh well, at least WITHOUT the wine and dine it sounds a little more typical of a doctor experience.

I miss seeing everyone around here. I took quite a bit of time off to try to recoup and put this mess behind me.

Yet, on November 8 mammo day hit again. It was a good result, but it was a yearly reminder that this will never really ever be "in the past." Not that my daily Anastrazole and seeing myself in the mirror are not daily reminders. Somehow they don't hit me as hard though as it's just part of daily life now. The mammogram- not so much. I don't think I will ever have another one that I don't worry.

So sorry to hear this site has been so slow and people aren't chatting and sharing like they used to.

Bug

ImWorthIt, I’m so glad your recent mammo was good. And I’m sure I’ll always have scanxiety.