NED post + comments !

[CRguy]

This is generally a good news post, just FYI !

A couple of recurrent themes on the CClub forum, since Feb. 2008 involve :
1. People with good news not wanting to post good news while others here may be facing new challenges.
2. People out of treatment, doing well, know they "should" feel happier…but aren't.

The first I understand completely, but I always remember the folks who were having tough times themselves saying, repeatedly " post the good news too, we all need a lift sometimes." … then there is always the hopeful example we can share with new members, who are scared as hell at the prospects of a cancer diagnosis.

The second, I was never very sure about. I couldn't wait to get away from doctors and treatments after my initial chemoradiation, surgery, chemo and ileo takedown. I wanted no part of being a cancer patient or being in follow up. My BIL, Stage III, who went through all this a number of years ahead of me, said he felt lost after being set loose from the Oncs, He used to get scans and bloods, treatments; everyone had something he was supposed to do; it was all planned and organized. When he was kicked out for regular follow up he felt totally lost. I told him "count your blessings and stay away from doctors ! "

Making a long story short … I just kind of get it now, after a first round of all this nonsense myself, a period of being NED, a recurrence, back in the lottery again, another round of this nonsense…. But instead of heading for the exit, like I did the first time, I actually understand the reticence of being cut free from the "system."

I definitely have feelings of " Ok so I am now NED" ( = No Evidence of Disease. )
My first time around I was totally focussed on the NO evidence of DISEASE part.
NOW I am more concerned with the no EVIDENCE of disease part.
Perhaps, as the lawyers would say, more of a distinction without a difference ????

Yesterday :
My Onc greeted me with the good news " Everything looks great, how are you feeling ? I think you are doing very well. I'll see you in six months and we'll do another scan in a year."

Generally I think a "normal" person would say " hellyeah, lemme outta here, solong seeyalater BYE !!! " But I am not normal I guess.
I am a Stage IVa CRC survivor which again, may be a distinction without a difference. While I was happy the current "evidence" was OK, I am now more concerned with continuing to look for "evidence" than I was first time around. In response to my Onc, I reminded him of my own philosophy which was forged in the classes of my old Medicine Professor : "You will miss more for not looking, than not knowing."

I told my Onc " we are going to keep looking if you don't mind." Now it's not that a 6 month versus 1 year scan at this point would necessarily make a huge difference in my future ????? But I don't really know. What I do know is that I am not going to be a victim of a health care system
"follow up protocol" ruling which has nothing to do with me as an individual patient. Just because the Onc is happy and the "protocol" is happy enough with a 1 year scan….. doesn't mean I am. So, six months it is.

So there it is.

I am again currently NED.
I am probably not as happy as I could be…..but, at least now I get that part.

OH, and the positive part for any new members here :

In Feb 2013, I will be 6 years out from the first doctor's appointment, 5 years out from the ileostomy takedown and joining the ColonClub Support Forum, 3 years out from the PET scan which identified my recurrence and 2½ years out from my last chemo.

Life does indeed go on… one step… one day….one scan at a time.

Sending Cheers and best wishes to all on the Journey.
CRguy

[NWgirl]

I "get it" too. I'm thrilled for you CRGuy - wishing you many, many more years NED. I really, really, really want to be in your shoes! I guess time will tell. We're making history you know?! That's how I think about it. We can't predict where we're going because medicine and knowledge are constantly changing and growing. And truth be told, I don't think I WANT to know where I'm headed. Not that I thrive on uncertainty, but some things are best left unknown. Just hoping for the best - for all of us.

[lohidoc]

Well, I get it too CRGuy. But surely there is material here for, I don't know, some more poetry perhaps???

[BrownBagger]

Amen, brother.

People post good news. People post bad news. We're all in this together.

This site has had my back, good news or bad (and I've had plenty of both). It's just our reality.

The support I've received has meant a great deal to me. So have the friends I've made.

[CRguy]

Amen to the friends, brothers and sisters in arms !

Apparently I've had a request ?

I have written poetry
...some would call it verse

a friend once told me, dude that's bad
...I said I've written worse

but that is not my burden now
as I journey this new road

Have I now vanquished ALL defeats?
do I retreat …. or just reload ?

In Harmony All !

[skypup]

Hard to follow such magnificent verse, so I'll keep it simple: CONGRATULATIONS on more time in NEDsville, may it keep on going! And bravo on calling your own shots on the watchful waiting timeline. Oh, and I really liked your parsing of "no evidence of disease"; I get it...

[Bev G]

Hey, CR, I get it too. How many of your stage IV brothers and sisters DON'T get it??!??? (and no, this isn't stageism, this is reality) Cancer is terrifying for every one who gets diagnosed, for every one who has a loved one diagnosed. It is riskier to have a stage IV diagnosis. Just is what it is. Every single day that each of us lives is a little victory---for each of us, individually, and together on the journey. I'm so glad your scan was clear. Cancer sucks....but you don't!

Love to you, and all my stage IV brothers and sisters (and everyone else, too, of course!)

Bev

[kiwiinoz]

Hi CR Guy

As a newcomer to this game I can't comment too much as my journey is just starting.

I can understand the distinction between the Ned and nEd, and I can only hope that I can get to that point to have the same emotions as you.

From my point of view I hope to be able to struggling with the same emotional issues in 5 years time, and then maybe you can tell me what you did to overcome it? Or maybe you don't overcome it. Maybe you just say that is life and you are going to have to live with it.

I've only known that I have cancer 6 weeks, and yet it annoys me when I hear people talking about the "flu that they feel like they are dying from". Can't blame them & I know that it is me that has changed. Maybe your answer is just to keep on looking?

Again, not a bad position to be in and, honestly best wishes on the search, but may your search be endless.

[NedPlease]

Thanks for expressing my feelings. I keep close tabs on you. Up for for a promotion if next month's scan is clear, I will be thinking about what interval I can live with
Very happy for you!

[cecioboe]

Right! It has been a big transition from active treatment to follow-ups... Jim is NED now and on the 3 month program. Since he still has his port (onc recommended leaving it in for a year) it requires periodic flushing which is actually okay since they can do his blood work at the same time. So he has not been set free yet. He is a pragmatic man and feels what will be will be. Let's just hope it is NED that which will be. He is waiting until next month when his Medicare kicks in before getting the next scan (is supposed to be now.)

In the meatime, please keep bringing on the good news. It sure made it easier for us to cope when we read about those who beat the beast knowing that Jim might too.

Ceci

[karin]

Well I am thrilled for You!!!
H A P P Y. DANCE. TIME!!!!
Congratulations, NED now and 4ever!! <3

[cptmac]

Oh how I get it. I started getting nervous as my appts got stretched further and further. For my last appt, I was more nervous than thrilled. No more CTs to catch my cancer. Just the same blood test that always says I'm healthy. But I knock on wood hoping to keep up my good luck. And I do visit back here from time to time. Grateful to see friends like you on here still helping the masses.

I wish you all the best on your journey.

[Rob in PA]

Totally relate to your feelings crguy.....but it's a feeling I'm happy to struggle with
Rob

[lohidoc]

Amen to the friends, brothers and sisters in arms !

Apparently I've had a request ?

I have written poetry
...some would call it verse

a friend once told me, dude that's bad
...I said I've written worse

but that is not my burden now
as I journey this new road

Have I now vanquished ALL defeats?
do I retreat …. or just reload ?

In Harmony All !

That's beautiful!

[Ashlee H.]

Love the great news. Understand the feelings. Just glad you are here making us smile with your words.