Hey--What's up with NED Posters?

[ANDRETEXAS]

There is no right or wrong answer.....some people want to move on, some want to pay it forward, some want guidance, some want to suggest, but whatever you do, and whenever you do it, do what's right for you and makes you a happier person.

[WifeOfMike]

Everybody on this thread had GREAT answers!

[weisssoccermom]

Those of us who are long term NED members...think about it...we didn't get to where we are without visiting forums like these for support, reassurance, help and friendship. Why not continue to stay? If nothing else, we can support others, listen if necessary and hopefully pass on the help that we got from those before us.

If I hadn't stayed around after being NED....if I had retreated to the 'land of the living'....would I have ever met Terry, Belle, Carolyn, Anita or Steve (SavemyArchie)? Would I have ever gotten to know PammySue, Mary, Gaelen, Ashlee, Nancy or SurroundedbyLove? What would my life have been like without having ever been able to meet those members or spend time talking with them on the phone?

While I know that in a previous thread it was 'suggested' that long term survivors should 'move on', perhaps it isn't that easy. Do we 'fit' in with 'normal' people? Is the 'land of the living' necessarily the place that's right for us? Not saying it isn't....just posing a question. Is the 'land of the living' a one size fits all place? Some members suffer from long term side effects...something 'normal' people just don't understand. Who do we talk to about it? Our friends don't understand...they certainly don't want to 'talk' about it....and since we look 'normal'....aren't on chemo, are alive and are years out from our diagnosis...we must be fine, right? Do 'normal' people in the 'land of the living' understand what it is like to have chemo brain....even a mild case years later? Do they understand the fear if we have diarrhea for any other GI problems for more than a day? Do they 'get it' when we complain about pain in our hips (from radiation treatments) or do they truly understand what it is like to have to pee quite frequently (another pleasant side effect of the radiation)? I have few side effects but other NED survivors have many many more and their life is oftentimes turned upside down dealing with them. I am fortunate in that respect but recognize there are those long term NED survivors that aren't as lucky.

Being here is 'safe'....it's a place where people understand. I frankly get scared sometimes, thinking of Terry, Carolyn and Nancy....three members, all around the same stage as I was....all had similar experiences as I did and ALL had a recurrence. Two of those friends are gone now.....one is still here and doing very well. I often wonder...'why them and not me'? Maybe I stay around out of a sense of guilt because I survived and two of my friends didn't. Maybe I stay around because I am scared that it might come back for me and I want to know everything ahead of time just in case. Maybe I stay around because cancer has changed me and no one understands that better than another cancer patient/survivor. Maybe I stay around for all of these reasons and more. I guess I just have one question. Instead of asking me why long term NED members stick around, let me ask those who object, WHY does it matter?

[PainInTheAss]

Imagine what this board would be like for new people if there were no NED posters and only people with progressive stage IV cancer who thought their piddly concerns where laughable in comparison to theirs, "Stop whining about chemo... I just had brain surgery."

This whole NED vs stage IV crap has got to stop. You never know which "team" you'll end up on and they both need support. NED does not mean "never had cancer." No matter how long I am NED, I will never be like everybody else. I am, and always will be, a part of this club. I joined when I got diagnosed.

[dianetavegia]

Why do people who are NED continue to post? Because NED can become active disease at the next doctor's visit. There are no guarantees AND the 'what if' never goes away.

I was NED for 3 years after Stage IIIB and my onc was sure I was in the clear. Then we found the small liver met. I have been NED for 3 years plus again, with my next tests in early October. By September, I'll be a basket case.

I believe that cancer NEVER leaves us? It changes us. It torments us. Even if the disease is removed and never returns, that fear, dread will always be just under the surface and just there enough to steal a bit of joy from every situation.

My onc told he he'd pronounce me cured when I had been 5 or 6 years out from my hepatic resection. I thought that odd since he had previously said 10 years after HR. Then I saw some news stories about treatments being denied, tests being denied, chemo being denied, surgery being denied people over 65. I'll be 65 in a few months and his change of heart most probably has more to do with Medicare's new guidelines that will not pay for more than 2 PET scans in a lifetime and no treatments that cost more than hospice or maintenance for persons over 70.

Diane

[justin case]

Why do people who are NED continue to post? Because NED can become active disease at the next doctor's visit. There are no guarantees AND the 'what if' never goes away

I believe that cancer NEVER leaves us? It changes us. It torments us. Even if the disease is removed and never returns, that fear, dread will always be just under the surface and just there enough to steal a bit of joy from every situation.

Diane

There is no arguing, with this concise statement
Michael

[cptmac]

Why do I come back????

When I was first diagnosed, I was looking for long term survivors, and they were hard to find. I told myself, until I meet my demise, I would post, to let people know I'm here. I agree with disco nap.... My reason is, to give people hope.

The question is, what deters me from coming back so often... I have to admit, I became increasing distant because of the disparaging remarks I too received from Gaelen. I felt like I had to apologize for not having any issues and surviving. I had to start putting in disclaimers on my posts, and I thought that was silly. But I kept coming back because of the promise I made for myself. And I did appreciate Gaelen's wealth of knowledge. She offered great advice. Because of where she worked and her background, she could really assist people during their treatments. I miss reading those types of posts that she made.

Why do I not come back as often now that Gaelen has unfortunately passed??? I was dx'd almost 11 years ago. Some protocols have changed. My knowledge may be outdated.

So my promise comes down to.... on occasion I check back. But every year, on my birthday, which is also my cancerversary, I retell my story. I put the disclaimer up for a few years to please ignore it if you heard it before, because I was informed that hearing my story over and over again wasn't pleasing to all.... But to the newbies who don't check back in the archives and to my old long time friends who appreciate hearing it, I repost it, once a year. If you don't want to see it, skip it. For those who find inspiration in it, I thank you for making me feel good about posting it every year.

As a warning.... It's coming up July 22nd.

[justin case]

Why do I come back????

When I was first diagnosed, I was looking for long term survivors, and they were hard to find. I told myself, until I meet my demise, I would post, to let people know I'm here. I agree with disco nap.... My reason is, to give people hope.

The question is, what deters me from coming back so often... I have to admit, I became increasing distant because of the disparaging remarks I too received from Gaelen. I felt like I had to apologize for not having any issues and surviving. I had to start putting in disclaimers on my posts, and I thought that was silly. But I kept coming back because of the promise I made for myself. And I did appreciate Gaelen's wealth of knowledge. She offered great advice. Because of where she worked and her background, she could really assist people during their treatments. I miss reading those types of posts that she made.

Why do I not come back as often now that Gaelen has unfortunately passed??? I was dx'd almost 11 years ago. Some protocols have changed. My knowledge may be outdated.

So my promise comes down to.... on occasion I check back. But every year, on my birthday, which is also my cancerversary, I retell my story. I put the disclaimer up for a few years to please ignore it if you heard it before, because I was informed that hearing my story over and over again wasn't pleasing to all.... But to the newbies who don't check back in the archives and to my old long time friends who appreciate hearing it, I repost it, once a year. If you don't want to see it, skip it. For those who find inspiration in it, I thank you for making me feel good about posting it every year.

As a warning.... It's coming up July 22nd.

I'm glad you will repost it, as it saves me time,from bumping it up. Some of us who have been around for a while, can bring up good posts from the past, that are timeless, and although treatment changes, some of the side effects don't. I was lucky enough to stay the hell away from Gaelen's bad side, butt I probably just squeaked by.
I'm looking forward to July 22, and I will have you know, I have a tendency to gravitate towards your posts.
Warm regards,
Michael

[cptmac]

Awww!!! Thank you Michael!!! You have totally brightened my day!!!

[Nik Colon]

I know this post was in response to another last month but wanted to say THANK YOU to all the NED posters, being somewhat of a newbie, it's nice and encouraging to see! ♡

[jaycey60]

Yes, please let me add my thanks to Ritz75's. Whatever the reasons that keep you here, I'm so grateful for your presence. No matter how scary your experiences, how dark some of your posts, they are REAL and it is such a boon for us newbies to find a place where people tell it like it is.

[CRguy]

Why do I come back????
.... My reason is, to give people hope.

Cappy ... Bring IT ... don't sing It !

YOU be bringin' IT for mega YEARS ...
and WE NEED to to hear you on the 22'nd

WORD !

CR

[Kiwi Debz]

IMO ....

It doesn't matter whether you have Stage, I,II, III, IV, or if you have it now or had it a hundred years ago .... Whether you have it, or your a caregiver.

We are all either living or have lived it ...

This forum is about 'friends', about getting through, about those that get it ......

And that is all I have to say about the matter .....

Deb

[canadiandaughter]

Can I add whether you are 18 or 89, everyone matters!!

[John72]

Every member here, NED or not, has a role. Some of us need things from this forum. Some of us give things to this forum.

When I was diagnosed and in treatment, I needed things from this forum. I remember searching for people with similar staging as me and desperately looking for long term survivors and people who were "cured" in order to give myself hope. It helped a lot to see long term NED stage IIIs because i had evidence that survival was possible.

Now that I'm NED, I try to give back. And, I now look for people with the same staging as me who are beginning their journey and I am hopeful that I can be the sign of hope to them that others once were for me.


It's important to have positive stories and NED posters here to ensure a balanced view between the good and the bad, and the hope and the despair, of this disease.

It's as if you read my mind and pulled out the words I would have said.

I agree as well. Actually I think its a rather big deal that Horizon, Disconap, and I all were diagnosed 3C in our 30's and all apparently remain NED. I don't know if either of them have considered that...that all three of us started on this forum within a few months of each other, all three of us younger in age and with fairly advanced forms of cancer. I 'd like to think that seeing that it gives hope to others...that Disco has Lynch syndrome, and that I have very heavy node involvement...and that a group of relatively younger people survived a fairly poor prognosis(though I think that 45% stage 3c number is now probably more around 60% considering the advances in medical treatment and surgery techniques).

And anyway, I'm not out of the woods yet as rectal cancer has a longer recurrence curve than colon cancer. So I'm sure I'll be around for some time still.