Broken and Sad

legaljen1969

Folks, there are a number of people who have been with WhatNext for quite awhile- most have been here far longer than I have.
I don't specifically recall how I came to know about the site, but I was so glad to find it in the early days of my diagnosis. I see new folks coming here with new diagnoses, and the lack of support and feedback has been astounding to me.
We once had a wonderful moderator in Greg. I realize that many people miss him very much, but I cannot imagine he would want this site to stop with his death. Maybe some feel otherwise.
Greg was a man who tried whatever came along to keep himself alive- the newest, latest and greatest. He was always trying to live a full life for himself and those who loved him. This site obviously gave him a lot of support and he supported us.
I am sad to see this site withering away, and would do most anything to revive it so that it helps others. This IS a place of hope. Please offer suggestions on how to keep it running.

legaljen1969

This site appears to be broken- whether because it is not being maintained, because people don't feel joy, because people miss Greg, because someone has stepped over a line unintentionally or whatever.

If someone doesn't feel comfortable, I urge you to let Colby (our moderator) know of the problem. Perhaps if there is a problem with a member- it could be addressed and resolved.

Perhaps we could ALL just have a discussion on where we see this site going and what it will take to get there. I hate for this valuable resource to just fade away.

If nothing else, look through the questions or home page and offer some support to someone new. I remember how scary and lonely it felt. I can only imagine coming here at the recommendation of my doctor, oncology nurse, or therapist only to find this ghost town that current exists. It would feel like one more level of abandonment and isolation.

I have already heard reports that people are no longer recommending this site because patients have reported back that no-one responds. That is sad to me. Is that what people want?

MarcieB

I hear you, sister, and I, for one, want this site to continue. I think we do NEED open communication amongst ourselves to see if we can get some answers.

So, to anyone reading this; please, please weigh in here and say whatever you are thinking about continuing this valuable site?

Molly72

Several people here have called out to Colby for this & that, but with no reply. Perhaps he is no longer the "moderator"!
I guess we still need a moderator for technical problems and such, but it seems to me that Colby really has no interest in us.

legaljen1969

I sent an email to Colby this morning and he replied within 20 minutes. He is around. I think he does have a greater scope of responsibilities related to "rarepatientvoice" that takes up a good deal of his time. His quick response let me know that he is paying attention.

There appears to be an ongoing technical issues with the notifications. I understand that many people use the notifications as their "cue" to check the site. He is aware of the problem and said he has referred our concerns up the chain. "They" are working to determine how this site moves forward since we no longer have Greg's leadership.

I do think Colby is trying. I think Greg devoted an immense amount of time to this site and spoiled us all very much.

Let's give it some time. I think they are trying to fix the issue.

It would not surprise me if, by not having an active moderator, there is a lot of spam and garbage they have to filter out. Perhaps the filters for what gets through have triggered the issue with the notifications.

Several people have offered to help in some way- to keep the conversations flowing- to do a bit of moderation. I could probably help early mornings, late evenings or on weekends. I do still work full time though, so I might not be the most effective moderator.

In any case, we are being heard. It's just not quick action like we were used to with Greg. It is very much my job to "poke the bear" in my career- so I will do what I can to stay on top of things.

Bengal

No one will ever fill Greg's shoes. I do miss him terribly. He was not just "the moderator" . He became a friend. His infectious personality and incredible sense of humor, often in the face of horrifying circumstances, went a long way in drawing us back in time after time. When things started to lag and nobody was posting any questions he would jump start the conversation by posing a question of his own or initiating a survey of whatever he could come up with to get people participating.

I found WhatNext (like many) at a time when I needed it most, suggested by a member of our local cancer support group. It pains me to learn that folks who are searching for that same personal support as was there for me when I most needed it are finding little or no response. I am at a different place now. CANCER is not something I want to talk about. Hearing about new diagnoses, recurrences, etc...., is not something I can deal with. I was away from the site for months but have just recently checked back in to see what was up. I find I cannot contribute to cancer related questions at this point in time. I was diagnosed with PTSD and find these questions act as triggers. Don't want to let others down became so many were there for me but I just cannot do it.

Sure hope you all can figure out what needs to happen to keep WhatNext going.

andreacha

I think I posted a month ago and spent 10 days in the hospital. I was discharged today after another 2 weeks, I did not have my computer and if I had I wouldn't have been able to. In about a week , hopefully I will. I totally agree that we must carry on Greg's legacy.

Carool

andreacha, I, for one, never saw your post that you were in the hospital (I was checking this site daily until the last few days; will resume daily or more). I’m so sorry you had to be hospitalized.

I agree with all of you. I have lots of time to help our beloved site — for us and in Greg’s memory. My problem right now is that I don’t have a modern computer (my Mac is almost 20 years old). I do everything on my iPhone, on which I have lots of apps that let me do much of what a computer can.

Jen, I’m quick to anger, and I was angry that this site isn’t being cared for as it should be. Thanks for what you wrote. I see that Colby is indeed working on WN. And everyone is right when we say that Greg is a very hard act to follow.

Bengal, I can empathize with your need to no longer be involved with cancer stuff, for your own wellbeing. Sending you hugs.

legaljen1969

Bengal, your perspective is one that I had not really thought about. I was not trying to be insensitive in any way. I know that sometimes we really do need to get away from the subject matter addressed here. I can see how it would be triggering for someone.

Right now, I am in a different phase. I think I feel compelled to "pay it forward" for the people who helped me and came alongside me. I am trying to learn about the diagnoses that others face and doing some reading so I can try to be supportive. I was very fortunate to have a very non-invasive experience. My treatment did not include radiation, chemotherapy, months and months of treatment. I guess I feel like while I am "strong" I need to help. I am not always strong. We are all at different places in our journey. Wherever we are, we do what we can in that stage to live our best life. I imagine there will be a time when I will need to take a break.

Andreacha, I am sorry to hear you have had a rough time lately. I didn't see a post about you being in the hospital or mentioning anything right before you went in. I hope you are doing okay for now. I think the last time you posted, you had a family member who was coming to be with you for awhile that could help you a little. Are they still around? Still helping? I don't want to poke the bear here. Just asking questions.

Carool, I too am quick to anger. My defense mechanism is sarcasm and it came out loud and clear today. A woman was pitching a temper tantrum on the elevator because the floor above us has a floor code and the office manager has to call the elevator up to their floor. The instructions are on a paper outside the elevator on the ground floor and she even admitted she knew that was the rule, but she got on the elevator and pitched a tantrum. She was literally stomping her feet and screaming that I wouldn't take her up (I don't know their elevator code by the way). She had on this ridiculous little outfit with blingy sneakers, a bedazzled baseball cap and something a Barbie doll would wear, but she had long light brown hair. So when I got off the elevator, I said "Well you have a nice day now Skipper." She was certainly of the vintage that she got the message because she gave me a death glare. Her husband who looked like a preppy little "Skippy" himself seemed fairly unamused too. I said it with a big smile on my face and showed her where the phone number was written.

Jayne

Even before Greg's passing, I was feeling like my "expertise" was fading as the years go by. The drugs are different, the surgeries have improved and there are many resources available that weren't when I was originally diagnosed (2005). This site was a god-send for me at that time. However, I will never forget the emotions, the drudgery of appointments and the world of worry. If I can help someone by answering questions or providing support,I'm more than happy to do that. I don't think I can take on the moderator position though since I'm full time care taker for my Mother these days. I agree it would be such a shame to lose all of this valuable information. I guess the question is - how many new visitor are coming and what does the traffic look like for the site? If Colby or someone can help us track that down, it may provide some answers on the future.

Carool

Jayne, my treatments were even longer ago than yours, but I still can tell others my experience. For breast cancers, there are new treatments and protocols, but some haven’t changed that much since my time. And, as you implied, we longtime survivors have a lot to offer.

Carool

legaljen, sarcasm or just an angry tone and words are also MY defense. I’ve toned it down some (depending on the situation and who’s involved).

petieagnor

Everyone,
I'm not consistent with checking the site. I've always relied on my e-mail to give me a new topic, etc. That isn't happening so I checked the site. Frankly, I've never really explored the whole site, either. I can say for certain, that I like the site & it is there when I really need to share or read that there are others like me. I have noticed that I'm not getting a daily e-mail & there are no new people asking questions. Yes, I agree, Greg was a gem & I also miss him. Do I have any answers; no & I'm sorry; I truly wish I did.

Carool

petieagnor, now we’re getting notices when anyone responds to something we’ve responded to. That’s an improvement. Even just commenting sometimes, about anything, will keep WN alive (I hope).

DeanaBeana

I haven't been able to log in for quite a while.This is Deana. I'm Greg's sister in law, Donna is my sister. Please do your best to keep this site alive and going. Greg lived and breathed to help you his WhatNext family. If it was a question and he didn't know the answer he'd do his best to find someone who did. Greg never liked letting anyone down and always had a way with words. Life has changed so much for my Sister and all of his family. He was our Rock, our Hero and our Superman

LiveWithCancer

i got a notification from the site for the first time in I don't know how long today. I came here ... Greg's picture and name are prevalent as contributor. Seems to me that administrators don't much care about WhatNext at this point - how hard is it to change the name to the current administrator instead of still sending things and posting as Greg? Just seems like a lack of caring about the community to me.

I checked for awhile, there wouldn't be anything here ... I got out of the habit of coming. Also, maybe about the same time as Greg passed away, I was getting tired of having cancer. Easy enough to say, right? I still have it, no amount of being tired makes it go away, but I found myself tired of thinking about it or reliving it or whatever. I don't have PTSD but I have burnout. I not only left WhatNext, I took a leave of absence from a board I serve on at my treatment facility, and quit doing any advocacy ... I have pretty much taken a break from cancer except for scans/doctor visits every 4 months.

Would be nice if the notifications worked better ... I would be reminded that WhatNext is still around and active ... and it would definitely be nice if the new administrators did things under their name and picture and not Greg's.

(Nice to see some of the names of people I have come to love over the years!)

MarcieB

LiveWithCancer, I am so happy to hear from you! LOTS of us have wondered about you and several others we have not seen in a long time. It is true, we have had a dry spell here, but things are beginning to look up. Please go to the Question section and pull up the survey that Colby has made available to us? You can express your hope to see things differently on that survey.

I can relate to wanting to take a break from cancer stuff. I think we all get to points of saturation and have to step back every once in a while. In response to that, we are trying to ask other types of questions that can keep us socially connected and keep this site alive so when someone lands here with a problem, we are in the habit of being here. so we can jump in and help.

Did you see the book question? It has drawn such a fun response, I hope you will check it out. And I know we are all interested in how you are doing? and if there is anything our collective experience can help you with? Thank you for posting, I hope you will continue to check in.

Carool

LWC, I’m so glad you wrote! As MarcieB says, many of us were concerned when we hadn’t heard from you here.

WhatNext is getting busier again. In loving memory of Greg, we will do our best to keep it alive and relevant to those with cancer. I empathize with you and others who have expressed the need to withdraw, as much as possible, from anything cancer-related. However, as MarcieB said, there’s now a bookclub thread. legaljen1969 has been especially tireless in trying to keep WN going, and her efforts, MarcieB’s, and others’, are showing results.

petieagnor

I'm with LWC, sometimes you just get fed up. You want a change, but nothing appears to change. I'm enjoying my grandson's visit from FL. Even though I'm not consistent I would hate to lose WN.

Molly72

I'm just fed up with the $#&@ cancer, it never ends with me. The book club is a wonderful idea, takes our mind off our problems.
Glad LWC is back in our group, we missed you.

Carool

DeanaBeana, thank you for writing to us. We will do our utmost to keep WN going and growing. We hold Greg in our hearts. All of us have gotten a great deal from WhatNext, and the site must continue, so that many more people can be helped through it. It’s unlike any other cancer survivors support site I’ve visited. Greg created a community (as you well know). Please take care, and give Donna best wishes.

Bengal

LWC, Molly72 and others I'm sure feel the same way, I HEAR YOU! Sometimes I just never want to hear that word CANCER ever again. I remember when I finished treatment one of the nurses saying "it's over". I just stared at her like she had completely lost her mind. It is never OVER. Right now I'm at a place where I just cannot deal with some of the specifically cancer related questions. I do, however, want to continue to contribute to WhatNext in other ways just to help keep it going. We have to. For Greg and Donna.