NED for three years - how about those of you who are NED for longer

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pamness
pamness Member Posts: 524 Member
edited March 2014 in Colorectal Cancer #1
I noticed when I was a newbie that there were not a lot of people posting who were NED for more than 1 or two years. There were some notable exceptions. I am now apparently someone who is also not posting much anymore. I think it might be helpful for those of us who are 2, 3 , 4 and more out of treatment to check in from time to time (mostly I am talking about me).

Pam
«1

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  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Still here
    I'll be NED 3 years in November,and I'm still here.

    *hugs*
    Gail
  • John23
    John23 Member Posts: 2,122 Member
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    Well.....


    Since it takes an average of 1-1/2 to 2 years for a cancer cell
    to grow large enough to be identified, rallying about "NED"
    during that time-span can only lead to a really big let-down later.

    And.... many people might feel like they will "jinx" themselves,
    if they brag about not having a reoccurrence.....

    And.... for many that are surviving, there's a certain "guilty feeling",
    that surviving brings, when we see so many not making it as far...

    I often considered moving on... but realized that perhaps something
    that might have kept me alive should be shared, rather than hidden.

    I don't feel guilty that I haven't suffered the ills of treatment,
    because as long as I'm alive, so is cancer.....

    My day hasn't ended yet... My fight isn't finished, and in the end,
    I may suffer as much, or more.

    Live for today, help others live for tomorrow.


    John
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
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    I'll say it out loud! lol
    I was diagnosed Oct 3, 2001....been clear ever since my surgery January 22, 2002. Are those the kind of numbers you're looking for?

    I can tell you that scouty, Ron, Kay, Lisa Rose, Emily, Kathy M, Katie, SpongeBob, Suzann are all doing well, too.

    Superstitions don't scare me....I had my ileostomy reversal done on Friday, SEPT 13, 2002! lol

    We're kicking @ $ $ and taking names!

    Happy Tuesday,

    Hugs to all!

    Stacy
  • KathiM
    KathiM Member Posts: 8,028 Member
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    I'll say it out loud! lol
    I was diagnosed Oct 3, 2001....been clear ever since my surgery January 22, 2002. Are those the kind of numbers you're looking for?

    I can tell you that scouty, Ron, Kay, Lisa Rose, Emily, Kathy M, Katie, SpongeBob, Suzann are all doing well, too.

    Superstitions don't scare me....I had my ileostomy reversal done on Friday, SEPT 13, 2002! lol

    We're kicking @ $ $ and taking names!

    Happy Tuesday,

    Hugs to all!

    Stacy

    Yea Stacy!!!!
    I LOVE your pic!!! I smile each and every time I see it, and remember the grand time we had in Nashville....

    Cancer celebration of 5 years in July, this year....

    Hugs, Kathi
  • ron50
    ron50 Member Posts: 1,723 Member
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    I agrre with Stacy
    I am coming up to the end of year 13 ca free ex stage3 6 nodes involved. Those that are still posting are not here to brag merely stating a fact. All those that get cancer do not have a short future. I have come to know respect and love my fellow long term survivors. Over the years we have all lost some wonderful friends and no one could blame us for distancing ourselves from the death and heartache. But we have chosen to keep coming back to help and encourage wherever we can. I cannot speak for the others but I am not afraid of cancer and dying. I do dislike cancer with a passion and I am more than happy to die of old age. Ron.
  • PGLGreg
    PGLGreg Member Posts: 731
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    I will be 5 years NED this
    I will be 5 years NED this Christmas, from stage 2a rectal cancer. I certainly don't feel guilty about that, but I do get the sense that posting here about success and good health tends to be resented, so I'm careful about mentioning that I have no problems.

    --Greg
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    PGLGreg said:

    I will be 5 years NED this
    I will be 5 years NED this Christmas, from stage 2a rectal cancer. I certainly don't feel guilty about that, but I do get the sense that posting here about success and good health tends to be resented, so I'm careful about mentioning that I have no problems.

    --Greg

    Greg
    I for one LOVE hearing about success + good health when it comes to this board.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    PGLGreg said:

    I will be 5 years NED this
    I will be 5 years NED this Christmas, from stage 2a rectal cancer. I certainly don't feel guilty about that, but I do get the sense that posting here about success and good health tends to be resented, so I'm careful about mentioning that I have no problems.

    --Greg

    Tell!
    I think it is GREAT to hear about good health!

    *hugs*
    Gail
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    PGLGreg said:

    I will be 5 years NED this
    I will be 5 years NED this Christmas, from stage 2a rectal cancer. I certainly don't feel guilty about that, but I do get the sense that posting here about success and good health tends to be resented, so I'm careful about mentioning that I have no problems.

    --Greg

    Good Health
    Greg... I think you may have misunderstood some comments over time. NO ONE resents anyone having good health. For the most part, everyone who posts here either has been diagnosed with colorectal cancer in one stage or another and although I'm pretty sure everyone understands that no two people will ever have the same results, we all want to hear encouraging stories of people who have been there, done that, got the t-shirt and are still around worrying about every day things like, who's going to take the dog out for a walk in the rain? Who's turn is it to take the garbage out? Who gets to do the dishes? Every day things! To hear that someone who was a Stage 1 and was caught in time, or someone who was a Stage 2, got treatment and is doing fine now. Then comes the Stage III and Stage IV camp... the more we hear how well people are doing, then the more we can believe that we, too, can all be around to say that numbers are just that... numbers.

    Of course, while fighting this disease and being a long term survivor, we will lose friends along the way... for many different reasons. Maybe they were just not strong enough to fight anymore. Maybe their disease was not caught in time. Maybe it's the luck of the draw and some people get to have stable, non-progressive disease while others have no way of stopping it... it just goes through them like a flood. Obviously, we are going to hear those stories, especially when we lose friends we've come to know here on the boards... and all the more reason we need to hear the stories of those who survive because they have the disease under control.

    Where you may have heard/interpreted "resentment"... that will come when someone insists the only way you are going to survive is if you follow "this" diet, or take "these" supplements, or "bury the wings of two bats along with 6 dandilion leaves, mixed with some cayenne pepper". It's quite possible that any of the above may have helped someone, or they may think it has helped them... more power to them. Another good one is "exercise! If you don't build up your muscles so that you can run the 10km marathon in under an hour, you are not going to beat this disease." That is NOT good information. Everyone knows that exercise is good for one's health... that is not new news... but not everyone is capable of doing the exercise some people would prescribe. Again, more power to those who can... but it leaves those who can't out of the loop and giving themselves thoughts of doom.

    So, by all means, every time you hit another milestone... another year, heck, another 6 months... these are reasons to celebrate and share with the rest of us. There is nothing better for the soul than to know that it IS possible to survive... just as it IS possible not to. But the more survival stories one hears, the more hope one has that the possibility is there.

    I'm happy to hear you are going to make the 5 year milestone this Christmas. That sure will be one heck of a celebration come December :)
  • claud1951
    claud1951 Member Posts: 424 Member
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    I'm one of those, too, Pam.
    I'm one of those, too, Pam. Don't post often, anymore, but always reading. The other fine folks, on here, know about the latest medicines and side affects, etc, so (in my way of thinking), I don't feel I can contibute much more (and that's okay)

    Have been NED for 3 1/2 years!

    Keep moving forward!

    Claudia
  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    Good Health
    Greg... I think you may have misunderstood some comments over time. NO ONE resents anyone having good health. For the most part, everyone who posts here either has been diagnosed with colorectal cancer in one stage or another and although I'm pretty sure everyone understands that no two people will ever have the same results, we all want to hear encouraging stories of people who have been there, done that, got the t-shirt and are still around worrying about every day things like, who's going to take the dog out for a walk in the rain? Who's turn is it to take the garbage out? Who gets to do the dishes? Every day things! To hear that someone who was a Stage 1 and was caught in time, or someone who was a Stage 2, got treatment and is doing fine now. Then comes the Stage III and Stage IV camp... the more we hear how well people are doing, then the more we can believe that we, too, can all be around to say that numbers are just that... numbers.

    Of course, while fighting this disease and being a long term survivor, we will lose friends along the way... for many different reasons. Maybe they were just not strong enough to fight anymore. Maybe their disease was not caught in time. Maybe it's the luck of the draw and some people get to have stable, non-progressive disease while others have no way of stopping it... it just goes through them like a flood. Obviously, we are going to hear those stories, especially when we lose friends we've come to know here on the boards... and all the more reason we need to hear the stories of those who survive because they have the disease under control.

    Where you may have heard/interpreted "resentment"... that will come when someone insists the only way you are going to survive is if you follow "this" diet, or take "these" supplements, or "bury the wings of two bats along with 6 dandilion leaves, mixed with some cayenne pepper". It's quite possible that any of the above may have helped someone, or they may think it has helped them... more power to them. Another good one is "exercise! If you don't build up your muscles so that you can run the 10km marathon in under an hour, you are not going to beat this disease." That is NOT good information. Everyone knows that exercise is good for one's health... that is not new news... but not everyone is capable of doing the exercise some people would prescribe. Again, more power to those who can... but it leaves those who can't out of the loop and giving themselves thoughts of doom.

    So, by all means, every time you hit another milestone... another year, heck, another 6 months... these are reasons to celebrate and share with the rest of us. There is nothing better for the soul than to know that it IS possible to survive... just as it IS possible not to. But the more survival stories one hears, the more hope one has that the possibility is there.

    I'm happy to hear you are going to make the 5 year milestone this Christmas. That sure will be one heck of a celebration come December :)

    hahahahahahaha ! Cheryl
    bury the wings of two bats..... LOL!
    I will try , but in the meantime just in case l will continue paying attention to my doctors (may be they are in the good way! LOL).
    As per my side no resentment to people NED at all! l really look forward to hear about them this is my main reason to be in the Board!
    Pepe. Stage lV
  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    AnneCan said:

    Greg
    I for one LOVE hearing about success + good health when it comes to this board.

    All that l want to hear
    and may be it is egoist (is that the word in English?) from my part, are good news ! GOOD GOOD NEWS WELLCOME TO THIS BOARD! No resentments at all ! Actually is there any 100 years NED ,stage lV in this board? LOL , if so let me know, it it's gonna be an adrenaline shot for most of us!
    Pepe.
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
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    Nine Years!! (woohoo)
    Hi Pam,

    I was dx'ed August 6, 2001 so I recently celebrated my nine years of cancer free. Stage III lymph positive zero mets sigmoid colon cancer.

    I'm one of those who not only encourages rigorous dietary changes for colon cancer, but entire lifestyle changes as well. In some opinions, cancer is a symptom of a deeper, root cause; and if we don't address the root cause, we may continue to deal with recurrent cancer. The approach that I embraced for curing my cancer, post surgery, was holistic which lined up with my personal belief system on how the body deals with disease.

    Everyone is different obviously, but my case is not an anomaly in the alternative world. And from this healing success stems an evangelical-like passion and fervor that may rub others in the wrong way. What can I say? It worked for me so who's to say it can't work for others.

    I'm not posting much anymore either. The multiple losses of friends over the past nine years here, compounded by a new life (we recently moved), has compelled me to limit my time on the boards. But I always like to chime in on the NED year roll call to give encouragement to folks out there starting out on their cancer journey. This place was a lifesaver nine years ago when I was scared and alone with a cancer diagnosis at 39 with 5 kids, and with a hubby who had watched with me as my sister died of intestinal cancer at 33.

    peace, emily the juice chick
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    2bhealed said:

    Nine Years!! (woohoo)
    Hi Pam,

    I was dx'ed August 6, 2001 so I recently celebrated my nine years of cancer free. Stage III lymph positive zero mets sigmoid colon cancer.

    I'm one of those who not only encourages rigorous dietary changes for colon cancer, but entire lifestyle changes as well. In some opinions, cancer is a symptom of a deeper, root cause; and if we don't address the root cause, we may continue to deal with recurrent cancer. The approach that I embraced for curing my cancer, post surgery, was holistic which lined up with my personal belief system on how the body deals with disease.

    Everyone is different obviously, but my case is not an anomaly in the alternative world. And from this healing success stems an evangelical-like passion and fervor that may rub others in the wrong way. What can I say? It worked for me so who's to say it can't work for others.

    I'm not posting much anymore either. The multiple losses of friends over the past nine years here, compounded by a new life (we recently moved), has compelled me to limit my time on the boards. But I always like to chime in on the NED year roll call to give encouragement to folks out there starting out on their cancer journey. This place was a lifesaver nine years ago when I was scared and alone with a cancer diagnosis at 39 with 5 kids, and with a hubby who had watched with me as my sister died of intestinal cancer at 33.

    peace, emily the juice chick

    Hey!
    Hey, Emily!

    Good to hear from you! Where have you been?

    *hugs*
    Gail
  • Nana b
    Nana b Member Posts: 3,030 Member
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    I'll say it out loud! lol
    I was diagnosed Oct 3, 2001....been clear ever since my surgery January 22, 2002. Are those the kind of numbers you're looking for?

    I can tell you that scouty, Ron, Kay, Lisa Rose, Emily, Kathy M, Katie, SpongeBob, Suzann are all doing well, too.

    Superstitions don't scare me....I had my ileostomy reversal done on Friday, SEPT 13, 2002! lol

    We're kicking @ $ $ and taking names!

    Happy Tuesday,

    Hugs to all!

    Stacy

    Stacey!!!
    What stage were you? Did you change your diet since DX? Do you take supplements?
  • Nana b
    Nana b Member Posts: 3,030 Member
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    tootsie1 said:

    Hey!
    Hey, Emily!

    Good to hear from you! Where have you been?

    *hugs*
    Gail

    Love to hear NED
    I do like to hear who is NED, especially those over 5 years. I like to know what they have done to help their cancer. Because if the majority of those folks are changing their diet and exercising, or whatever, I want to know. The last think my ONC told me, as I waked out of that NED door was, vegetables, fruit and exercise. Yesterday, at my 3 month check, he said you have gained weight, make sure you are staying off the fat, and walk!

    I'm doing it.....but we never know if it's enough.
  • KathiM
    KathiM Member Posts: 8,028 Member
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    Nana b said:

    Love to hear NED
    I do like to hear who is NED, especially those over 5 years. I like to know what they have done to help their cancer. Because if the majority of those folks are changing their diet and exercising, or whatever, I want to know. The last think my ONC told me, as I waked out of that NED door was, vegetables, fruit and exercise. Yesterday, at my 3 month check, he said you have gained weight, make sure you are staying off the fat, and walk!

    I'm doing it.....but we never know if it's enough.

    Subtle changes for me....
    Because of chemo-induced lactose intollerance, I severly restricted my dairy. (Nothing life threatening...lol...just ALOT of time spent in the bathroom if I eat too much milk products...and yogurt ALWAYS gets me going when I'm a bit...well...plugged). And, because beef takes so long to digest, I limit eating it to 2-3 times per month. I always ate fresh fruits and vegies, so that didn't change after my dx.

    But the cool thing is that since cutting back on dairy and beef, my cholesterol, always above 220, (my doc and I were discussing meds), now nestles around the 180 mark...YEA!!!

    My life has changed, as you may imagine from my travel posts. I am fortunate that I could afford to retire. And live in 2 countries. And, necessarily, organize my life, which in turn has cut WAAAAAAAY back on the stress!!!

    MY onc told me I had 6 months to live, 5 years ago. I never forget that, and always remember to tell people I love them. I figure these last 5 years have been a gift...

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
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    2bhealed said:

    Nine Years!! (woohoo)
    Hi Pam,

    I was dx'ed August 6, 2001 so I recently celebrated my nine years of cancer free. Stage III lymph positive zero mets sigmoid colon cancer.

    I'm one of those who not only encourages rigorous dietary changes for colon cancer, but entire lifestyle changes as well. In some opinions, cancer is a symptom of a deeper, root cause; and if we don't address the root cause, we may continue to deal with recurrent cancer. The approach that I embraced for curing my cancer, post surgery, was holistic which lined up with my personal belief system on how the body deals with disease.

    Everyone is different obviously, but my case is not an anomaly in the alternative world. And from this healing success stems an evangelical-like passion and fervor that may rub others in the wrong way. What can I say? It worked for me so who's to say it can't work for others.

    I'm not posting much anymore either. The multiple losses of friends over the past nine years here, compounded by a new life (we recently moved), has compelled me to limit my time on the boards. But I always like to chime in on the NED year roll call to give encouragement to folks out there starting out on their cancer journey. This place was a lifesaver nine years ago when I was scared and alone with a cancer diagnosis at 39 with 5 kids, and with a hubby who had watched with me as my sister died of intestinal cancer at 33.

    peace, emily the juice chick

    It's ALWAYS grand to hear from you!!!!
    I'm so glad things are going so well for you, dearheart!!!!

    You were one of the first people I 'met' here on CSN. And, yes, over these short years, we have needed to say goodbye to many dear friends. BUT many, as has already be posted, are living life, too!!!!

    Hugs, Kathi
  • Nana b
    Nana b Member Posts: 3,030 Member
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    KathiM said:

    It's ALWAYS grand to hear from you!!!!
    I'm so glad things are going so well for you, dearheart!!!!

    You were one of the first people I 'met' here on CSN. And, yes, over these short years, we have needed to say goodbye to many dear friends. BUT many, as has already be posted, are living life, too!!!!

    Hugs, Kathi

    That's what my daughter
    That's what my daughter said, "focus on who is living and not who has passed away, because I am sure there are a lot on the forum who are out there celebrating their life, as sad as the deaths are, you need to focus on the good, the living..., so you say!

    Raquel
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
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    Nana b said:

    Stacey!!!
    What stage were you? Did you change your diet since DX? Do you take supplements?

    Stage
    I was Stage 4 with liver mets and lymph node involvement. I didn't drastically change my diet, but it wasn't crazy out of whack in the first place. I take vitamins, and admittedly, I barely did prior to cancer.

    I did the chemo/radiation route.

    It saddens me when things work for some people but not others, but I am always inspired by those giving 200% in this fight.