Is This Over?

legaljen1969

When I arrived to WhatNext almost a year and a half ago, this was a thriving community of helpful people with a lot of knowledge and even more heart. No doubt, most of that was due to Greg's encouragement and diligent moderation. He offered so much knowledge and encouragement to all of us. We certainly miss him very much.
It seems that WhatNext, as a discussion community may have reached its end and that makes me really sad. I have seen new members come and post their initial experiences of starting their journey. There is virtually no response from anyone. I remember when a new diagnosis would have had 15-20 "You've Got This" posts within a day.
There are so many people here with so many experiences, and I wish that others were able to continue to benefit. I know that moderation of the site is not what it was. I know that notifications and "digest" emails don't go out like they did. However, the site still works so I hope we can bring this back to be some light in a dark time

legaljen1969

I see the many blog posts by "Let Life Happen" and I do see a few familiar faces that tend to pop up from time to time.
Perhaps WhatNext is a forum that has passed on with its founder and faithful moderator, and there is another place for us all to gather. If that's the case, I hope that someone will share links and posts about a place they find answers and encouragement.
It seems WhatNext has been all but abandoned, and I just want newcomers to know that it is NOT that you are unheard. It is not that you are alone. This group has just become very quiet.
If you are new here and find that it is not meeting your needs, I certainly understand if you find a forum elsewhere that meets your needs for knowledge and encouragement.
@Colby, if you are still moderating the site- please check in and let us know if you have any plans for resurrecting this site. So many of us are hanging in until the bitter end, hoping the site will once again become our haven to share our joys and sorrows.

To those who were active before, please come back and offer encouragement and knowledge. I really find it so hard to believe that so many have just given up after Greg's passing. Of all people who believed in hope and continuing the quest until the days simply ran out, that was Greg. He kept trying and trying until there was nothing else. It makes me sad that this site seems to have gone by the wayside with his passing. I know we all miss him very much, but this site was so important to him. I cannot imagine that it is his desire that we all just walk away and give up. I cannot imagine that he wants to go on without sharing our knowledge, hope and encouragement.

I guess that's my question. Is it the desire of the majority that we give this site a final memorial service and let it go? I would hate to see it go, but maybe that's what has to happen.

Whatever happens, I hope those who have been my encouragers and lifelines will find another forum to share your knowledge and encouragement. Carool, Meyati, ChicagoSandy, Bug, PoGuy18, Jane, Jayne, Petieagnor, Marcie and so many others. I know Marcie is very busy right now and don't blame her for flying under the radar here. It is great to see family after so long apart.

We The People have the power to bring this site back to what it was before, or to let it go. If we want this site to rise like a phoenix, we can make it happen.

Carool

legaljen, thank you! You said it! It’d be a big loss if WN ended. There are other cancer sites, but as far as I know, nothing that encourages the closeness and continuity of relationships as WN does (or did).

Greg was, as we know, a great moderator of this site. I hope WhatNext continues. But it must be moderated well.

meyati

Yes, I'm guilty. I try to remember how much WN means to me. There have been times that we all manned the barricades to help others-sometimes they get back and update us. I've been sort of unfocused. I'm in the middle of being diagnosed with a rare autoimmune pancreas disease.

A few weeks ago my dermatologist said that I might have an odd skin cancer on my face. He froze it, and I return for follow up june 10---meanwhile my Gastroenterologist got part of the diagnosis of Igg4, and he asked me if I had lesions. Yes- my face. He told me to tell my dermatologist about Igg4. In NM when a doctor orders tests, scans, it is illegal for another doctor to look at the results, even if I print them out. I don't get good medical care because of that. In 2019, I often had the same test-blood-done over and over- sometimes in the same week. My veins have been taking a beating. I just realized that I don't have the phone appointment for the end June with my GI. I guess I forgot, as there was a big ado about my pancreas med. Seems that there wasn't any in NM. They got it in. My co-pay is $45, the pre-medicare price is $1,813.19. Ouch--what does a person do without insurance?

legaljen1969

Meyati, please know I am not fussing about anyone not being active. We all have lives, medical conditions, and the rest of the world to deal with. I am just wondering if WN is an idea and concept that has seen its best days already and is just ready to fade away. I do miss seeing posts from familiar faces.

I do have a question though. How does one have any continuity of care if your doctors are forbidden, by law, to look at tests or scans ordered by someone else? From what you describe, there isn't much continuity of care. Does that mean that if your primary doctor put in an order for you to have some sort of GI scan that the gastroenterologist in charge of your GI care could not look at the results of that scan? OR that the gastroenterologist could not let your primary doctor see that scan? What happens with biopsies of various things? Like my PCM was the first one to put in an order for my mammogram and when I got the results- the radiologist who looked at the mammogram was one provider, my surgeon was another provider, my medical oncologist was another provider, radiation oncologist was another, the radiologist who performed my biopsy was another provider, the doctor who did the SAVI scout implant for my lumpectomy was another provider, the anesthesiologists for my lumpectomy and subsequent mastectomy were more providers. So that is 8 providers who were involved in my care after my PCM ordered my first mammogram. Are you telling me that, in New Mexico, none of those other 8 providers could have seen that initial mammogram because my PCM ordered it and not one of them? How would the radiologist who performed my biopsy have known where to biopsy? He would have had to order a separate mammogram and go from that? And then he couldn't have shared his findings with my surgeon? How would she know what to do? That is crazy. Maybe I am asking this from a point of view taking it to the extreme- but the way you explained it- that no other doctor can view reports from any other doctor- that's the way it sounded.

Anyhow, I hope you find out something soon and that you get good news, or at least the least disruptive unpleasant news possible.

Bengal

For me, losing Greg last year was something of "the last straw" in a whole series of loses I had had to deal with and try to find acceptance. I think too it kind of coincided with my having reached a point where I just didn't want to hear or talk about CANCER anymore. WhatNext was most definitely there for me when I needed it and it saddens me that folks who are reaching out to WN now are not getting the response they are searching for; the kind of caring response that can mean so much to anyone struggling with diagnosis, treatment, recovery or, unfortunately, in some cases, dealing with non-recovery and end of life. NO ONE can fill Greg's shoes but WN needs competent and compassionate moderation. I hate to think of the site just fading away. It meant so much to me at a time when I really needed exactly what I found here. I cannot promise I will return to being a frequent contributor. I am in a different place now.

Change of subject: my experience here in NY is when I have any kind of testing I can designate who I want results made available to. Or at any time I can request that certain test results be made available to another doctor. The permission for sharing has to come from me.

Best of luck.

legaljen1969

@Bengal, I sort of figured that how it was everywhere. If the patient gave permission for results or the medical records to be shared, that could happen. The way I read Meyati's post indicated it was different in NM. At least as far as my cancer treatment goes, I want everyone in my treatment team to have a seamless transition and access to my records. There is so much for us to remember as patients and sometimes it is easier for the doctor to be able to get what they need without me having to remember. Although, I had a copy of my POA given to every single provider to enter into their records to authorize my husband to authorize those records. I did a form for record sharing and had it notarized and gave it to every provider.

I can certainly appreciate and understand that you are in a different place in life right now. I can understand if you don't want to come back and contribute. I was just trying to get a feel for who was at all still checking in and how much support there might be from people who had been at it for a long time.

I am getting the idea more and more than WN is just going by the wayside and no-one is particularly interested in keeping it going. I hate that new patients are not going to get the benefit of the wealth of knowledge on this site. I have heard from a few people recently, even local people in my area, that their oncologist recommended WN as a great support group and they were very disappointed to find out that no-one was around. They went back and told their oncologist that the site was shut down. So, none of the oncologists around here are recommending it anymore. I have talked to people in my community and neighboring communities as far as 75 miles radius, asking about WhatNext and who has heard of it. Everyone says the same thing- "WhatNext was shut down. There used to be a moderator named Greg but he passed away and the site was shut down." So as far as folks around here, it's not even mentioned anymore.

I have told people it is not shut down, and I post here, but the oncologists are NOT recommending the site for support or education anymore. In fact, I spoke to the person who first told me about it and he said he doesn't recommend it at all. That's pretty sad.

Carool

It is pretty sad that WN has no moderator who is really attending to this site.

I’m waiting a bit to see if Colby responds to your message to him, legaljen. Please let me know. If he doesn’t, I’ll write to him and be less pleasant. I’m angered by what’s happening here.

Bengal, we’ve communicated on your wall. I wish you everything good.

Meyati, we’ve communicated, too. Good luck with your biopsy.

Carool

And we’re once again not getting notices of comments. I‘ll save the censor the work of substituting my word: XXXX!

legaljen1969

Carool, we have offered to try to moderate or keep things going. I don't know if there is anything else we can do.

Molly72

I am not trying to be "snarky", but if the last message from the moderator was about some unknown baseball or basketball player, it shows that perhaps he is not on our wavelength.
Very discouraging, as we all need someone who understands our interests & needs,
Where are you Colby????

Molly72

Well, Carool, the XXX censor is still on the job, but message robot is gone with the wind!

Carool

Molly72, it figures. I actually typed the four Xs myself, to save the censor the trouble of doing it. I’ll say it again: XXXX!

And, yes, he’s not on our wavelength. Maybe he thinks we’re a bunch of old fogies, most of us, and who cares about old people, especially old women? Though not everyone here is elderly or a woman.

Molly72

Haa-- I lived thru the '60's twice, and lived thru cancer 4 times!

JustForToday

It was very helpful when I used to get emails letting me know that activity was available for viewing. I just checked my account profile and it says that I should be getting email notifications. Those of you that have successfully gotten emails again, would you tell me the procedure to get myself back on the email list? Thanks.

Molly72

JustForToday--- We all are having that same problem of not getting notifications of messages for some time..
We have asked the new moderator to remedy this problem, but it has not been fixed.
Guess we all just have to look at the site every day & check.

Molly72

Cancer is back---- this time another Melanoma on my leg.
Luckily, it is still "in situ", which means it is in earliest stages, and has not spread.
My 5th cancer, not including all the basal skin cancers.

legaljen1969

Molly, well darn. That's not news anyone wants to get. I am sorry to hear that you are having to deal with cancer again. Glad it is "in situ." Hopefully the treatment will be mostly simple and not too much to deal with.

We are here for you.

Carool

Molly72, I’m so sorry, but I’m glad it was caught in time. Please keep us posted.

JustForToday

Molly72, so sorry cancer is back. I hope you are just as successful in beating this one as you have the prior 4.

Bug

Molly72, I'm so sorry to hear the cancer is back. How are you doing? What's the next step?

Relative to the initial post by legaljen, I'm guilty of not posting lately. I've been dealing with my husband's health issue and haven't had the bandwidth for much else I'm afraid. I hope to be better.

Molly72

Bug-- I wish your hubby good health and you peace and strength.
I will be fine as far as the repeating cancer, it has not spread sez the Dr., hope he is correct.
But today I had another a. Fib attack, I think that is the 5th one. Getting old is not for sissies!

legaljen1969

@Bug, I am so sorry that your husband's health concerns have become so serious and require so much time. Of course all of us understand how hard it is to have a serious illness- either of our own or caring for someone else. Just be kind to yourself and allow yourself time to process everything. Please pop in from time to time and let folks know how you are doing.

@Molly72, I am sorry to see you are having Fib. attacks. That's scary. Not fun at all. I hope this repeating cancer does not spread. You are a fighter. As I told Bug above, be kind to yourself. Practice lots of self care and keep in touch with the community.