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If all the NED's left!

lp1964's picture
Posts: 1240
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.



maglets's picture
Posts: 2596
Joined: Jun 2006

AHH Laz...what if no stayed?....just not if we are NED but if no one stayed....I think you do not have to be NED to offer sound wonderful help.....I love when anyone stays around....You are right....NED must mean something but so so many are soldiering on and living with cancer and getting on with it. That phrase reminds me of a story.....I was in Toronto this weekend to help my daughter move into her first house.  She works at the archives with a young man from England who said......"if I were to write a "Self Help Book " it would have to be called...."Just Get On with It"....there is something to be said for that title....I believe there are many many people here who operate under that title......they are just getting on with it........

I send you all best wishes for your wedding....it sounds as if you are blessed with a very wonderful partner.  All best love.....maggie

dmj101's picture
Posts: 527
Joined: Nov 2011

HI Maggie,

This is exactly what I was speaking with my oncologist this week about... This has been sort of the idea I live with. 

 I am not NED and never will be... I will always have something to manager as we are just happy to controll mine as the mets are small but many in my lungs.

However life hasn't stopped.. I am still working, still dating and still loving my life and my family and my friends. I even just bought a brand new car.

It is funny how I feel and look better yet my disease is still with me and not deminishing and even in this reallity I feel and I don't know why which is what I was speak with the Onc about how is I haven't crumbled and been lost to all this... She explained to me the spectrum of survivial is wide and it is best to be on the side that drives and thrives and is looking forward positively... I don't know why I do this.. but I do... my mother always told me I was stubborn and no I actually believe that to have been a compliment.. as if I wasn't I have lost this fight I think,,,, I am not letting this disease win.. and notice please I am not using the word... I have decided if I don't use it I don't dwell on it and i feel free-er.

I will tell you I don't post as often anylonger but I do lurk... I found that my advice was not always welcomed here by those even more stubborn than me.. and some rather rude person actually followed me to my facebook site and sent me a rather undesirable message... so I have to say I now controll what I post here as it is rather exposed.. When I really feel I have something to offer I will post and if I see someone I have connected with posting I will read their post and maybe join the thread, but honestly not likely to get extend myself to those I have not connected to in the past.. I don't know if I will always feel this way.. but I do presently and having seen the passing of so many of so many of those I met over over the last few years I kind of feel like maybe this is my way of grieving them. The following statement is kind of how I feel about cancer.. there is a reasn this happened and I need to learn and understand the message I am supposed to have learned. So I will see you just not as regularly... Love you all and my prayers and energy is extended to all in this game.. Donna


KathiM's picture
Posts: 8077
Joined: Aug 2005

There IS a rather large 'lurking' population here....*grin*....I am one....


My clinical experience is so outdated, being from 8 years ago, that I can no longer offer treatment advice.  But I still watch, comment occasionally....there are even some that will come and read, and then post in a very strong support group formed on Facebook...we are kept in the loop, believe me!


I feel the customs of Asia are spot on....honor the older ones, the ones that have much to offer from life experience.  Without them, we, as a people, are doomed to repeat history....


Hugs, Kathi

KathiM's picture
Posts: 8077
Joined: Aug 2005

What if all of the 'experienced' people left.....whether we want the experience or not...there it is....


I am blessed to have many, many friends in the 'heat of the battle' or the 'warmth of the aftermath' from cancer.  I have learned much from them!  You are on that list, dearheart!


Hugs from one 'old timer' to another......Kathi

annalexandria's picture
Posts: 2573
Joined: Oct 2011

That seems very English to me...just get on with it.

Am I right about that, Trubrit?

And it's not a bad philosophy.  Seems like the English equivalent of our "It is what it is".

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