mm66ny wrote:Thanks, Kenny! I will.
mm66ny wrote:I've been NED for over 5 years, and I rarely post anymore. I rarely even visit this board.
But just because I'm NED and don't post anymore, doesn't mean I have completely moved on with my life. I imagine the converse is true as well: you can't conclude that continuing to post means one hasn't moved on with their life, either--whatever "moving on" means. As Gaelen once admonished me: "it's not like you were on vacation and now you're back."
And here's the good thing: I don't have to understand why someone continues to post after they are NED. For whatever reason, they find it helpful to them in some way, and if I can't understand what that is, that doesn't really matter. And it ain't my job to tell them to stop posting, even if in some circumstances it might be holding them back from moving forward (which, again, I can't assume). They'll get it when they get it.
I totally get what Karin was saying; I don't agree with her, but I've certainly thought the same thing sometimes. Why the fuck would anyone want to continue to hang around here if they don't have to. But if that bothers me, that's my problem, not theirs.
I visited the board this morning because, even though I've been NED for a long time, I've been wondering if I should just get a colostomy. I am sick of spending my life in the toilet (although I'll admit it's a way to get away from my kids for a few minutes); tired of having to wipe my butt a zillion times a day; waking up with smears; avoiding sex with my beautiful wife because of same--hard to feel in the mood when you're worried about poop creeping out; never being done pooping. Quality of Life.
Where else am I going to find people who can relate to my experiences?
disco nap wrote: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.
No response necessary. Just being a smarty pants. Believe me, I'm holding back. And that's OK too. I can do that. No one needs to know what I'm really thinking.
Deborah Ann wrote:Another NED poster...lots of reasons to be around...first one never knows when one goes from NED to full blown cancer again. I'm sure most of us were not told that there was a 100 percent certainty that the cancer was gone for good. This forum has great information just in case that big "C" ever decides to come back. Also, once one has been on awhile you get involved in other peoples stories..............................
And..I just like hanging around with a bunch of great people!
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