Dropped On Our Heads

meyati

Belive me, we can submit questions by diagnosis, and none of you will get the question. It's like about every 6 months- Colby wanders over- opens the site and flips a switch so some of us get a notice with a question and the name of a new member. Then he shuffles back to bed. I do get regular Rare Cancer Surveys. The software decides who is selected. ASCO finally posted a picture of my type of cancer a few months ago.

Carool

legaljen, thank you for writing to him. I wrote but was sarcastic, so that isn’t good.

I agree that it might be better if we didn’t have to put in our diagnosis. Reddit/cancer doesn’t require that, though I dislike it that there usually no dx when people write questions.

Meyati, I think legaljen thinks we’d get more questions without diagnoses.

I also don’t get the emphasis of WN on rare cancers. Of course they need to be included, but most people don’t have rare cancers (obviously).

Bug

Hi, everyone. I started a Thankful Thursday question but it did not post to the questions. It posted on my wall. Go figure. Anyway, if you're interested in responding you could go to my wall.

meyati

My comment is that nothing is being posted. About every 6 months- Colby will click on something and post a question. Then he goes back to bed or something. A diagnosis isn't any guarantee that it will be posted at all. They just go on our walls- that's it. Has anybody posted any pics lately? We should try that and see what happens. Maybe I'll post goofball Ryder.

Molly72

I also had a very rare cancer & sometimes get some survey about a rare cancer that I don't have.
It also offers money to take the survey.
It is NOT personalized for what I had. Nor has Colby reached to me for info about anything.

So "COLBY" what is that you want?
We have enough problems with our personal medical problems and all the other problems going on in our country. For you to try to end this site is unconscinable (sp.) by your lack of doing your job. That seems to be really popular in our country today!

MarcieB

I opened my email this morning and my heart leapt to see all the notifications and a Daily Digest..only to find that Bug's new question is on her wall. Like ALL the questions that have been posted in the last MONTH. Who knows how many we have missed? How many people might very much need our support and experience, but we don't know?

And neither mine nor Carool's question was listed under "Recent Activity" and both of us posted this past week. (our questions are on our walls, of course, if you want to go there? - mine is about hair dye and I really DO want some feedback) And Bug's question generated a link from Carool that shows her artwork! I encourage everyone to go there, talk to Bug, and check out Carool's link - it's amazing!

legaljen, you have been so patient and still persistent in your contact with Colby. He has not answered my last inquiry, but I suspect he is weary with my obvious angst over all of this!

legaljen1969

I have nothing else to offer. I hoped that maybe by taking the path of kindness, I would "attract more bees with honey than vinegar." Well, maybe Colby is placating me. I get that. Now, I am probably going to get roasted for this, but I have tried being persistent. I have tried being nice. Either way, it's not doing anything that pleases anyone or everyone.
There are a lot of people who seem to have plenty of time to say what's wrong with this site, but how many have reached out to Colby to try to find out what CAN be done to make this work right for us again? How many people have contacted him with any sort of offer to help or moderate?
Unless someone here knows Colby personally (and maybe someone does), we don't know what else is going on in his life that prevents him from being able to give the time to this site that Greg gave. I wasn't exactly clear on whether Greg had a full time job over the past couple of years in addition to handling WhatNext OR if WhatNext basically became Greg's full time job.

People are angry that the site has been let go, but has anyone else offered to step into Greg's role? Has anyone else suggested someone who might be interested in stepping into his role.
I guess I am a little confused as to whether this entire thing was Greg's brainchild, or whether this is something created by someone else that really spoke to Greg and became his passion? If it's Greg's creation, what did he create? WhatNext? RarePatientVoice?

I asked Colby what would be required to be a mediator- how much time, how much effort, can he train me on what I need to watch, even though I have limited time to do so. I have not heard from him, but I just made the offer earlier this week. I do not have my own funds to pour into making the site work. I do not have the prior skills to be an administrator for a site like this. And most of all I don't have the "street cred" of many of you who have gone through multiple treatments or at least had radiation and/or chemo. I am one of those who doesn't feel like I had "real cancer" and have been told that by members of the community- not the WN community, but in the real world. I do still work a full time job and significant overtime so my time is pretty limited, but I OFFERED to be part of the solution.

It seems to me though, that all of the time and effort in the world is not going to appease anyone until and unless we find a clone for Greg and someone who has the time and personality and resources to give this site what Greg gave to it.

I know that a few of us have reached out to Colby several times now. Some of us have tried to resurrect the community on Facebook. Some people are trying and some are just complaining. So I issue the challenge now, if you have done nothing but complain- you can either make an offer to do something to be part of the solution, or remain part of the problem. This site has turned into bickering and complaining. I don't know if I were Colby if I would spend a lot of time trying to resurrect this either.

Yes, I am a little fed up today. I need to go take a nap and go back in my cave.

Molly72

OK, I have complained, but I have found that I squeaky wheel gets greased.
I also have every right to complain. I am very technically challenged, & have neither the training nor the hardware (equipment, or whatever you call it) to help.Stepping in as moderator is asking a bit much.

Evidently Legaljen is not happy with me & some of the others, so be it. You have managed to drive me away.
Bye!

legaljen1969

Molly72, that is NOT the case at all. No-one is upset. I am saying that we need to hold Colby accountable yet we also need to offer to do whatever we can according to our own capability. I am not incredibly technical, but perhaps a bit more than you, Molly, so I offered to do something I thought might be in my realm of capability.

I am only saying that we need to all contribute something and figure out how we can meet the need too. Offer a constructive criticism or a possible solution. That's all I am trying to say.

We all have a right to want and expect better, and sometimes we will all complaint, but once we realize those complaints are falling on deaf ears- either we can pick up and offer to do something or we can accept the site is going away. Colby has given us a way to reach out to him. Maybe he responds. Maybe he doesn't. But he has given us the means to do so. So do it. Maybe blowing up his email will wake him up.

I just think calling him a middle schooler and all of the other names he has been called is probably not motivating him to respond. Just my two cents.

You stay Molly. Please. I am leaving and this time it is for good. Done forever.

MarcieB

Molly, all due respect, I think you may have read more into what Jen was saying. I don't believe for a minute she meant to suggest we all should volunteer to take on the intricacies of running an online site - heck, NONE of us can do that (I don't think?). I think she is right to point out that Greg may well have had the tech chops to do it, and he may also have had the time. So, naturally we are floundering since he left. In our frustration I think a lot of us (me included) have resorted to being rude to Colby. Somehow we will get the answers, but leaving the site is not helping. We need to stick together here. Legaljen, take a deep breath, put on your big girl panties, and c'mon back here! (I will do the same, we need some cooler heads now) ;-)

meyati

I'm not able to post any pics--I tried--I have pics from Japan when I visited my brother. I have pics of Stonewall and Missy-Missy passed this spring. I have pics of Jax, Missy's seeing eye/comfort hound. I have pics of Ryder, who is Jax's playmate. It's hard for a young dog to play with a 13 year old hound-blind-deaf too. Some people think that dogs don't know much. Missy just got so weak that I had to take her to the vet. For several weeks, Jax or Ryder would find something with her scent on it, and they'd drag her leash, a spare harness-toy and they'd bring it to me- and look at me like--OK mommy- lets go get Missy.

Carool

MarcieB, thank you. I feel the same. I, too, was rude to Colby. No more of that from me.

And I, too, hope, legaljen and Molly72, that you don’t leave. We need every hand on deck (yes, I’m resorting to guilt tripping!)! Please stay. Let’s see what’s next.

alivenwell

I have been on Dr. Greger's site. He used to use disqus. There were many people interacting with it. Apparently he decided to no longer use disqus. I suspect it may not have been secure.

Molly72

I have just received 7 "like" notices in a row from alivenwell. I can't even quit !

No idea who Dr. Greger is, nor his "disquis", but I can tell you that this site is not being properly monitored. Except of course the dirty word robot. Sarcasm has it's uses.

Carool

Molly72, please don’t quit! You’ll keep getting our “likes,” no matter what!

I wish the censorious bot would leave.

meyati

Molly-stay on--I like talking to you----

Molly72

Something is wrong, Carool-- all those "likes" were posted one right after another, - according to the time that was indicated on my notice.
I have noticed this before, I get several "lives" from the same person, just a minute apart, now there were 7 in a row. & then 2 out of sequence-- not kosher, even on this site.

Meyati-- I guess I will continue since I can't quit!!!! Hope your dogs are feeling better, pets are our
joy & best friends.

Carool

Molly72, I also got five “likes” from alivenwell yesterday evening, all in a row. I assume she just “liked” a lot of my responses — and yours. But who knows, with this site?

I’m glad you’ll stay!

alivenwell

It is true. I needed some positive vibes after having a rough week. Trust me. Really rough.

Molly72

The mystery solved-- glad it was positive instead of a problem with the site.
But............ sorry that alivenwell is having a rough week.
If we can help you, just say the word.

MarcieB

I would just like to point out, that if any outsider comes on to this site and notes over 80 responses to a question titled "Dropped on our heads...." that person is going to wonder what kind of site this is! Lol!

Obviously we are using this very old conversation point, that was posted a month ago, to talk to each other. Seriously, something needs to be done and we are all getting so frustrated. And I sure don't know how alivenwell posted 5 *likes* in a row? When I hit *like* the blue print turns black and I cannot register it again. So if someone can post several likes in a row, for sure it isn't me.

All I know is this morning I saw two questions titled "encore" by legaljen. I clicked on the first one and left a response. Then I left for church where I had a lot to do with the services today, so I didn't get home until afternoon. I took a nap, opened this site...and legaljen's question, which I answered, is gone. I get a message that says, " Error - Error, Page cannot be found. This happens when content is removed for any reason"

Pretty soon we are all going to open this site in the morning to be greeted by a white screen that says;
Error - Error
Page Cannot be Found
This happens when no one knows who is doing what.
For further assistance...well...there is no further assistance.

(yikes, sarcasm...! I couldn't help it)!!

legaljen1969

Marcie, the reason you couldn't find the "second post" is because my own technical illiteracy reared its head. I did the post title "Encore" and wrote some stuff. Then I thought I "responded" to my own post to add more material, but somehow I accidentally started two posts called "encore." So I merged the two and deleted one. Apparently I deleted the one you were trying to access.
It's not the site this time. It was all me.
Time to end this thread and start something new.

MarcieB

I came here one more time because this is the only place I know to be able to reach people. I posted a question last evening and it is (Of Course!), on my wall instead of here. But, I thought it would be linked on the Digest so people could find it - but no. None of my questions have EVER been listed and I am really starting to take it personally. It's not cancer related, but it has to do with this site, so maybe check out my wall if you get a chance?

Bug

MarcieB, I received a Digest last night and your new question was listed.

Carool

Bug, I see Marcie’s latest question only under Dropped on Our Heads, not as a new question with its own heading. It’s been more than a month since there’ve been any new questions under their own headings.