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weird transitions

katenorwood
Posts: 1853
Joined: May 2012

Hello guys and gals,

It's been a few weeks since my hospital stay and I'm physically getting stronger.  Some days I sound like a tea kettle going off on the stove top.....lung squeeling at me.  I don't use the O2 as much....but still am hanging on to it to get through home based PT.  I have my first recheck w/my primary this a.m.  Cold morning, around -5 but should get a bit warmer....in the teens today.  (so I'll be using my mask ...) Not a bad idea to use it at the clinic too with all the flu warnings out there again.  So anyway I'm losing track here....I read a wonderful article on the term NED in a magazine the other day.  Until I joined ACS I had never heard the term....or truely understood it's meaning until battling the demon.  I would love to hear from some of our long term survivors, and the gang I started with on what these 3 letters mean to you.  To me their HOPE, Hard won HOPE of a brighter future for others following us.  I also am in total  awe of the survivors in TRIALS.....they are the true pioneers that are breaking the ground in the discovery of new treatments and maybe even a cure to be found.   Just thought I would throw all of this out there.....just ideas and thoughts I've been pondering.   Thanks for reading....I feel like its relevant to what some of us are living.   Katie  

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Clean and clear baby...

For someone that doesn't completely understand, (or at least my abi-normal thinking)... Is that some people associate that term as being cured. I even hear MD's saying cured.

It does actually mean (as we know), No Evidense of Disease. Meaning at the time of the exam, there is just that, No Evidense of Disease detected...

I'm not sure if I'll ever be comfortable with the term cured....

But I can definitely live with No Evidense of Disease, and hopefully for a long time.

JG

 

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I'd love to read that article on NED, if you can point us in the general direction. gracias!

I've had multiple followup scans and scopes from 3 different oncs and my ENT--and none have pronounced the term. so far "negative" on recurrence, but I have yet to hear the magic acronym.

by the way, there is a group of cancer survivors who have a band callled N.E.D. Susan Gubar wrote about them in her cancer blog at the NY Times.

best wishes for your continued progress.

katenorwood
Posts: 1853
Joined: May 2012

BSB,

It's one that we can get free (always good) and sometimes have excellant advice.  The exact article was entitled MIND GAMES.  I don't know for sure but maybe can find it on the net also under curetoday.com ?   Katie

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

thanks Katie! I've been going through a lot of good articles at that site.

found one called 'mind games', but it seems to be about chemo brain. interesting anyway.

Mind Games

best wishes.

katenorwood
Posts: 1853
Joined: May 2012

BSB,

The one I'm referring to is about a persons personal feeling about NED and how other's relate to hearing the term....and not understanding what it means.  Article is by Gina King if this helps....in the magazine it's on page 70.  Wondering if Mind games is the main format ?  And other articles get printed under this ?  Katie

CivilMatt's picture
CivilMatt
Posts: 3060
Joined: May 2012

Good Morning Katie,

 

That cup of tea sounds good and just a spot of O2 for me.

 

I don’t know about the rest of you, but -5 degrees is not persuading me to wear my mask.  It wouldn’t be very warm, but it does have eye holes.

 

I am not a Long Term Survivor, but some young chippie on the H&N forum called me old (woe is me).   If these tired old bones of mine hold out I will be happy to give you a NED definition in 1 year and 3 months or 4 years and 3 months (what ever qualifies me).

 

Well, I checked you out and minus the tea kettle sound you appear to be in true Katie form, keep it up.

 

Best,

 

Matt

CivilMatt's picture
CivilMatt
Posts: 3060
Joined: May 2012

popping you back on top

katenorwood
Posts: 1853
Joined: May 2012

Matt,

Good job on trying to fix what that idiot did with his/her spam.  But I feel like instead of saying popping I want to say tag.....you're it !   Katie

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Never Again Dear

No Evidence of the Demon

Not Entertaining Disease (as in this body)

but my favorite NED definition is "More Time w/ those I Love"   ;)

 

Of course I am just "funin" but NED to me is I won this round, in my case with the help of my faith, prayer buddies, God, Doctors / Nurses, and my online family here at CSN :)

 

Best,

Tim

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

opps i missed this original post some how, now happy to share my thoughts

 

NED  =     No Evidense of Disease in the area's we have looked at and samples we have taken

 

my doctors taught me with this statement....    " can not find anything, just keep having fun"

 

with the new normal that changes often for survivors the word Cure is not something i support. after year after year of wondering when and if it will show it's ugly head again it has taught me their is no cure.   fyi, i do not dwell on weather it will or if it will come back..... just little things remind me from time to time, like hacking up phlem. 

 

NED is wonderful and very much having him/her/it around. when anyone report's NED i am so excited!

 

to all you NED's just keep having fun each and every day and accept the NEW NORMAL during all your FUN times

 

john 

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