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If all the NED's left.

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

I received a lots of different responses to my previous posts about NED's staying or leaving on the board. Both approaches are absolutely acceptable. Everybody has the right to leave cancer behind them. 

But one realization hit me this morning.

What would this forum look like if all the veterans and NED's left it?

This cancer world would be full of confused, desperate new and existing patients with a lot of unanswered questions. A lot more patients would delay crucial exams, tests and scans. Many more would be misdiagnosed and mistreated. Many would suffer unnecessarily from side effects, because they wouldn't know what to do. Many would lose hope for the lack of incouragenents and motivation from members that can provide that hope and examples of good outcomes.

Without you this would be a dark, desperate and hopeless place with lot more mental and physical suffering.

Something to think about.

Laz

Lorikat's picture
Lorikat
Posts: 556
Joined: Jul 2011

Most of us drop in and post if we have an answer, information, or just o try to cheer one on......    While still trying to accept NED.....

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

I did not have the benefit of a forum or support site when I went through treatment and I will say it was a very lonely and dark time.  What you say is correct.  Without veterans coming here to share info and advice, newbies would feel just as I did--lost, confused and like the only person on Earth fighting this disease.  I do, however, understand why some people just want to move on. 

As for me, I will officially be a 5-year survivor on Monday, September 9th.  I still feel compelled to share what I've learned from my experience.  But I find that I am starting to forget some details of those days in treatment, which I guess, perhaps, is a good thing.  Often times, people who completed treatment more recently than me can give better advice, especially on things that may not have been available when I was treated.

I think a support site made up entirely of newbies just now going through treatment would be beneficial, but at times, it might seem like the blind leading the blind, for lack of a better way to put it.  There's nothing like the advice from someone who has already been through this.

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

You dont know how much your participation is valued and appreciated.

You paid your dues in so many ways and I hope life blesses you for it.

Laz

mp327's picture
mp327
Posts: 2852
Joined: Jan 2010

Thank you so very much for your kindness!

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

i also had no one to ask any questions of except the docs at MDA -----they try hard but do not do it as well as ones who have had this cancer..... i made a LOT of mistakes but did the best i could....back in 2009,  I  was too ill to come on to this site to ask any questions ...... i do value all of the advice.... thanks to all for your help..... i am 4 years post last July.....i am still having lots of issues, pain, bleeding, etc  but i am grateful for how far i have come....... sephie

LaCh
Posts: 509
Joined: Dec 2012

Cancer is not who I am. It's something I had. I have no idea the date of diagnosis and no idea of the date that I got the news that I was cured because I don't mark either day. I also know that there are other members who, for their own reasons, hang around long after the disease, treatments, and with luck, cure are behind them. Without judgment but with a good deal of curiosity, I've pondered this, but can't say that I understand it. I have drive and desire to help other people, and plan to volunteer at Sloan Kettering when I'm a year post-treatment (that's their rule), but there are those with no desire to leave this forum and I leave it to them to help those who follow. Whatever my contributions might be, they're not necessary because other people will make them, so in that way, my desire is met--to move on with my life with one more experience under my belt, resolved and behind me, knowing that others without a similar desire to cut the cord can offer support to those who seek it. On a deeper level, to stay connected to this forum, forces me to identify with something that I don't. Why would I do that?  I'm not a "community" kind of person, and I don't identify with any, and since I don't identify with this disease either, I've moved on. This way, everybody has their needs met; mine to move on, newly diagnosed patients get support from those who have been treated but don't have the desire to move on just yet and those who want to stay connected to the forum for reasons of their own, do that.  I checked in the other day on a whim after 7 pr 8 months of being away, and after the threads that I posted no longer receive any follow-up posts, I don't expect to check in again, at least not until or unless the next whim takes me. Whether it does or it doesn't, who knows. It's not something I think a about. But a lack of desire to help others isn't my motivating force behind leaving the forum. The desire to just get on with life, knowing that others who are more attached to the forum will help others, are the motivating factors. If there were no one else to carry the torch, I'd stay for the newly diagnosed, but that isn't the case. That said, and I'm sorry if this ruffles feathers (seems to be my forté) I don't think that those who stay do it for purely altruistic reasons, (for example, they'd like to leave the forum but feel a duty to stay for the benefit of others) but that they also need to be connected for their own reasons, and there's nothing wrong with that. Let me say it again; staying beyond treatment and cure is fine, if that's one's desire. It's just not something that I want. I'm not going to apologize for my comments, as I've occasionally done in the past. It should be self-evident that these are only my opinions, and by nature, opinions are varied and not always in agreement with others'.  Anyway Ip, there are many kind and capable people here who will help you through the process, and remain figuratively at your side for as long as you need or want them to. Then, when you've healed from your treatments, if you do desire, you can stick around and help those who come after you. When you're no longer a newbie but have gone through the expeperience, you can decide what it is that you want.  I wish you well; you'll get through it like the others before you. 

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