Do NED patients tend to leave the forum?

lp1964
lp1964 Member Posts: 1,239 Member

For those of you who have been here for a long time, I'm just wondering if people who get well tend to leave the forum?

Also who would be the person who is not around anymore (either passed or got better and left), that left the greatest impression on you?

Laz

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Comments

  • herdizziness
    herdizziness Member Posts: 3,624
    All

    All leave an impression, all fought valiantly whether they left due to NED, due to death of a particular cared for one, or if they passed.  ALL hold a place in our hearts, and an impression upon us.

  • KathiM
    KathiM Member Posts: 8,028

    All

    All leave an impression, all fought valiantly whether they left due to NED, due to death of a particular cared for one, or if they passed.  ALL hold a place in our hearts, and an impression upon us.

    Well said, dearest!!!

    Hugs, Kathi

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Not a matter of leaving

    For many it is not a matter of leaving when NED or the loved one has passed.  Many choose to become lurkers rather than regular posters while they "process" the change.  That said, many of us still in the fight take "holidays" from the board as well.

    As Winter Marie said, every person who posts here leaves their mark...becomes memorable...because when they join...they become part of the virtual family (with the exception being the spammers we occasionally get).

    While some do truely make a deeper impression with their willingness to share, their attitude, their humor, their resiliance...it is impossible for me to single out just one...and to make a list of some there would be a risk of leaving off someone who brought great meaning to the fight...and that includes our wonderful caregivers who also post.

    The only ones we truely lose as posters are those whose voice is silenced forever by this dreaded disease...but they remain in our hearts.

    Marie who loves kitties

  • PhillieG
    PhillieG Member Posts: 4,866
    NED

    It's been my experience that often people who become NED or Cured do leave the forum. Some lurk but there are some who wish to not be reminded of this chapter of their lives.

    With the other question about who left the greatest impression on me, it would have to be Jana Miller.
    Yes, we're all wonderful but Jana was exceptional IMO....

  • angelsbaby
    angelsbaby Member Posts: 1,165

    All

    All leave an impression, all fought valiantly whether they left due to NED, due to death of a particular cared for one, or if they passed.  ALL hold a place in our hearts, and an impression upon us.

    right on

    well said

     

    michelle

     

  • Sonia32
    Sonia32 Member Posts: 1,071
    I am ned (four years so far)
    Still here but more of a lurker. I can n teever really leavae as this place and the people have done so much for me. Some of us tend to hang on facebook i have a group there...like a home away from csn or when you might want a break from here. I know we all never forget, as some of our friends are still in battle. And even the class of neds some tend to go back a class if the beast comes back...so it always stays with you one way or another
  • Maxiecat
    Maxiecat Member Posts: 544
    I just hear the words NED for

    I just hear the words NED for the first time last month...I am still here and plan to check in when I can.  I guess for me I come back to check on my friends here...when I was actively fighting this...like when doing chemo, getting scans, etc...I was on here a lot more...looking things up and asking questions.

    Now that the kids go back to school on Monday, things are going to be really busy.  I hope to be able to check in at least oncd a week...but I may not post to every post.

    alex

  • geotina
    geotina Member Posts: 2,111
    Laz:

    Unfortunately, many of the people that were on the forum when I joined almost 4 years ago, unfortunately, have lost their battle.  Some who achieved remission tend to put cancer behind them and try to regain some normalcy in their lives.  Although so very many have had lasting impressions on me, four people come to mind, and their deaths were so very hard.

    Shayenne (Donna) early 40's, mom to 4, sudden brain met and she was gone.  Now that gal really had a kick **** attitude!

    Idlehunters (Jenny) another gal, around 50, again a sudden brain met and she was gone.  She would not hesitate to tell someone to get off their rear and get on with it, dont' let cancer and chemo stop you from anything.

    Then there was Lisa42, a gentle soul if there ever was one.  Mid 40's, mom to 3.  Her liver just would not cooperate.  I remember crying when she posted she had been to the doctor, and it would only be a few weeks, and she had to tell her kids.  She was gone before those few weeks went by.

    We can't forget Eric42.  Craig and Jenny visited with him when he went on hospice care. 

    There are so many others that left a lasting impression but those four come to mind immediately.   

    Tina

  • mukamom
    mukamom Member Posts: 402
    geotina said:

    Laz:

    Unfortunately, many of the people that were on the forum when I joined almost 4 years ago, unfortunately, have lost their battle.  Some who achieved remission tend to put cancer behind them and try to regain some normalcy in their lives.  Although so very many have had lasting impressions on me, four people come to mind, and their deaths were so very hard.

    Shayenne (Donna) early 40's, mom to 4, sudden brain met and she was gone.  Now that gal really had a kick **** attitude!

    Idlehunters (Jenny) another gal, around 50, again a sudden brain met and she was gone.  She would not hesitate to tell someone to get off their rear and get on with it, dont' let cancer and chemo stop you from anything.

    Then there was Lisa42, a gentle soul if there ever was one.  Mid 40's, mom to 3.  Her liver just would not cooperate.  I remember crying when she posted she had been to the doctor, and it would only be a few weeks, and she had to tell her kids.  She was gone before those few weeks went by.

    We can't forget Eric42.  Craig and Jenny visited with him when he went on hospice care. 

    There are so many others that left a lasting impression but those four come to mind immediately.   

    Tina

    Well said Winter

    But Kerry S. came to mind when reading the OP.  Attitude, Attitud, Additude.  Mind, Body, and Spirit. I try so hard to keep that mantra in

    Robert. 

  • geotina
    geotina Member Posts: 2,111
    mukamom said:

    Well said Winter

    But Kerry S. came to mind when reading the OP.  Attitude, Attitud, Additude.  Mind, Body, and Spirit. I try so hard to keep that mantra in

    Robert. 

    OMG Robert -

    I remember Kerry.  He was something else.  No matter what was going on, when Kerry logged on there was no holding back the tears and laughter.   Everyone was his friend and talk about a guy who would tell it like it was...that was Kerry.

    Tina

  • thingy45
    thingy45 Member Posts: 632
    geotina said:

    OMG Robert -

    I remember Kerry.  He was something else.  No matter what was going on, when Kerry logged on there was no holding back the tears and laughter.   Everyone was his friend and talk about a guy who would tell it like it was...that was Kerry.

    Tina

    Ned

    I am Ned, but I have not.left, I lurk, because I feel I have not much to give. I decided not to take Chemo or Radiation, my own decision against my onc's advise. I have been lucky so far, still NED. However very nervous, next week Friday a complete bones can planned,due to some pain and problems I have.

    Lisba 42 , also Buzzard come to mind,  so many helped me to make decisions . Their faces are forever in my heart.

    Cancer sucks, period, no matter what kind of cancer.

    love to you all, Marjan 

  • traci43
    traci43 Member Posts: 773
    good questions

    I've been in this fight for 6 years now, always more of a lurker than a poster.  I tend to be more active when my cancer is active as I try to find out what new things I can do to fight this.  I've learned so much and continue to learn every day.  When I'm clear and off chemo, I tend to be less active, not because I'm trying to forget what's happened, but because I'm out living and enjoying life.

     

    I love winter marie's response, everyone has left an impression on me, and I've learned so much from all of you.  It's quite sad when a member or their loved one passes because everyone is fighting so hard.

  • dmj101
    dmj101 Member Posts: 527
    Someday I hope to find out

    Someday I hope to find out and I will let you know

  • lp1964
    lp1964 Member Posts: 1,239 Member
    Participation of survivors...
     

    ...and fighters is essential!

    Every time I see a member dropping by and giving us a rundown of what happened to them in the last couple of months or years, gives me incredible hope, strength and encouridgement. This energy, this incredible power of the human spirit is just as important, if not more, than the treatment we receive.

    I studied medicine for 5 years, but first time I experience the incredible distruction of a disease on myself and others. We owe it to ourself and to others to throw in all the support, all the tools, all the experience and knowledge to help ourself and others going through this dreadful journey.

    I noticed that there are two basic types of personalities on this forum just like in the real world. There are givers and there are takers and there is nothing wrong with that, because we need each other. The givers have the need to give, the takers have the need And they are the best receivers. The givers are here all the time giving updates about their progress, difficulties or stability. They stay on to give support, information, advise and tips. The takers don't say anything most of the time, they deal with their problems alone which I believe is not beneficial for healing. They swing by once in a while, again, saying nothing about what's going on with them, just asking questions.

    I would like to encourage both givers and takers to be more active for their own benefits and other's. The NED's need to give us that hope that there is an acceptable result to this disease that we can live with. The takers have to open up for their own sakes, so they don't have to fight alone. I believe those that would bring their own deepest fears to the surface could contribute to this cause very much.

    Bless you all,

    Laz

     

  • KathiM
    KathiM Member Posts: 8,028
    lp1964 said:

    Participation of survivors...

     

    ...and fighters is essential!

    Every time I see a member dropping by and giving us a rundown of what happened to them in the last couple of months or years, gives me incredible hope, strength and encouridgement. This energy, this incredible power of the human spirit is just as important, if not more, than the treatment we receive.

    I studied medicine for 5 years, but first time I experience the incredible distruction of a disease on myself and others. We owe it to ourself and to others to throw in all the support, all the tools, all the experience and knowledge to help ourself and others going through this dreadful journey.

    I noticed that there are two basic types of personalities on this forum just like in the real world. There are givers and there are takers and there is nothing wrong with that, because we need each other. The givers have the need to give, the takers have the need And they are the best receivers. The givers are here all the time giving updates about their progress, difficulties or stability. They stay on to give support, information, advise and tips. The takers don't say anything most of the time, they deal with their problems alone which I believe is not beneficial for healing. They swing by once in a while, again, saying nothing about what's going on with them, just asking questions.

    I would like to encourage both givers and takers to be more active for their own benefits and other's. The NED's need to give us that hope that there is an acceptable result to this disease that we can live with. The takers have to open up for their own sakes, so they don't have to fight alone. I believe those that would bring their own deepest fears to the surface could contribute to this cause very much.

    Bless you all,

    Laz

     

    Well put....thank you!

    November 2004 dx'ed stage 3 rectal cancer.  Chemo, rads, surgery to remove my rectum followed.  Was told I had about 6 months of living left.

     

    January 2005 dx'ed stage 2 breast cancer.  (found during a PET scan for the rectal).  Surgery, chemo, rads followed.

     

    NED/last treatment July 3, 2006.

     

    I never WAS good at this 'new math'....but the way I calculate it, the 6 months has turned into almost 9 YEARS, and I am still NED on both!!!

     

    Hugs (from an oldie that will check in more often now...been busy with a new heart for my beau), Kathi

     

    P.S.  I will speak to the oldies not posting often...as we realize our lives DO go on, living life gets in the way!!  THIS is a GREAT thing!!!!!

  • johnnybegood
    johnnybegood Member Posts: 1,117
    lp1964 said:

    Participation of survivors...

     

    ...and fighters is essential!

    Every time I see a member dropping by and giving us a rundown of what happened to them in the last couple of months or years, gives me incredible hope, strength and encouridgement. This energy, this incredible power of the human spirit is just as important, if not more, than the treatment we receive.

    I studied medicine for 5 years, but first time I experience the incredible distruction of a disease on myself and others. We owe it to ourself and to others to throw in all the support, all the tools, all the experience and knowledge to help ourself and others going through this dreadful journey.

    I noticed that there are two basic types of personalities on this forum just like in the real world. There are givers and there are takers and there is nothing wrong with that, because we need each other. The givers have the need to give, the takers have the need And they are the best receivers. The givers are here all the time giving updates about their progress, difficulties or stability. They stay on to give support, information, advise and tips. The takers don't say anything most of the time, they deal with their problems alone which I believe is not beneficial for healing. They swing by once in a while, again, saying nothing about what's going on with them, just asking questions.

    I would like to encourage both givers and takers to be more active for their own benefits and other's. The NED's need to give us that hope that there is an acceptable result to this disease that we can live with. The takers have to open up for their own sakes, so they don't have to fight alone. I believe those that would bring their own deepest fears to the surface could contribute to this cause very much.

    Bless you all,

    Laz

     

    Laz

    that was very well said i dont know what category you would put me in.i dont consider myself as a taker as you put it even tho i dont say much on here i do get on this board several and i mean several times a day and read to keep up with my cyber family.my reason for not putting alot of info on here about what has happened to me in the past 5 years is because overalll medically i have had bad experiances with all my treatments,from the radiation +xeloda to shrink the original tumor in my rectum in 2008,to the oxy that felt like it almost killed me 10 treatments of that when the onc(who i fired)would not listen to me about my side effects in 2009,to doctors telling me i was cured and in jan,2011 had mets to my liver and one lung,had liver resection done in sept 2011,had rfa done on a spot that came back on my liver in feb2012,had my spleen out in feb 2013 so i could continue trying to save my life with chemo because platelets would not rise,now i have as of feb 2013 38 spots in my lungs and im inoperable.i dont want to scare the newbies on here by telling of my bad experiance and that is why i dont post alot not because i am a TAKER as you put it,i am just one who has a hard time with treatments and dont want to discourage anyone new on here like yourself so i tend to be a little quiet unless someone ruffles my feathers.im sorry to be blunt,im sorry i can be more helpful on here but that is just the way i feel.i think more people tend to post more about thier good responses to thier treatments than the bad times they are having...Godbless...johnnybegood

  • lp1964
    lp1964 Member Posts: 1,239 Member

    Laz

    that was very well said i dont know what category you would put me in.i dont consider myself as a taker as you put it even tho i dont say much on here i do get on this board several and i mean several times a day and read to keep up with my cyber family.my reason for not putting alot of info on here about what has happened to me in the past 5 years is because overalll medically i have had bad experiances with all my treatments,from the radiation +xeloda to shrink the original tumor in my rectum in 2008,to the oxy that felt like it almost killed me 10 treatments of that when the onc(who i fired)would not listen to me about my side effects in 2009,to doctors telling me i was cured and in jan,2011 had mets to my liver and one lung,had liver resection done in sept 2011,had rfa done on a spot that came back on my liver in feb2012,had my spleen out in feb 2013 so i could continue trying to save my life with chemo because platelets would not rise,now i have as of feb 2013 38 spots in my lungs and im inoperable.i dont want to scare the newbies on here by telling of my bad experiance and that is why i dont post alot not because i am a TAKER as you put it,i am just one who has a hard time with treatments and dont want to discourage anyone new on here like yourself so i tend to be a little quiet unless someone ruffles my feathers.im sorry to be blunt,im sorry i can be more helpful on here but that is just the way i feel.i think more people tend to post more about thier good responses to thier treatments than the bad times they are having...Godbless...johnnybegood

    Dear Friend,

    The way I see it is that any experience that teaches us something, broadens our good and bad perspectives is invaluable. When I know what you, Craig, Joe, kennyd went trhrough, even though is frightening, but it's an option, a possibility. But what I get out of it that the human endurance is incredible.

    In our society we have an opinion about "takers" as negative. I don't see it that way. Not being able take or receive is a big problem for a lot of people And just as disadvantages for "givers" as the feel of isolation if takers.

    So god bless the givers and god bless the takers, because without each other we would be lost. But we both need to do more what we are bad at, right?

    Laz

  • danker
    danker Member Posts: 1,276
    NED

    Going on three years NED and I still post. We are all different  in how we respond!!!

  • thingy45
    thingy45 Member Posts: 632
    danker said:

    NED

    Going on three years NED and I still post. We are all different  in how we respond!!!

    takers and givers

    Hi LAZ,

    I don't consider my self as a taker. I give freely and often of myself, I volunteer for many different charities, including visiting, elderly shut-ins, sick people etc.

    Yes, I am a lurker, the reason is that I declined the chemo and radiation, so I have nothing to give as advise there are many better qualified then I am.

    I am supportive because I am a firm believer of possitive thinking, saying thank you for all we have and will receive.

    So I don't know if I qualify as a "taker" or as a "giver" is there another word for me on this board?

    I have been NED since 2011, T3N1M0 stage 3. Left Hemi very high up and down below.

    I believe in living life to the fullest each day possible and ,my motto is "one day at a time".

    I am nervous for every CTscan, CEA test and now a bonescan, but keep those things to myself, there are people

    who are fighting the hard fight, who need our love and attention more then I do.

    Hugs to all,

    Marjan

  • lp1964
    lp1964 Member Posts: 1,239 Member
    thingy45 said:

    takers and givers

    Hi LAZ,

    I don't consider my self as a taker. I give freely and often of myself, I volunteer for many different charities, including visiting, elderly shut-ins, sick people etc.

    Yes, I am a lurker, the reason is that I declined the chemo and radiation, so I have nothing to give as advise there are many better qualified then I am.

    I am supportive because I am a firm believer of possitive thinking, saying thank you for all we have and will receive.

    So I don't know if I qualify as a "taker" or as a "giver" is there another word for me on this board?

    I have been NED since 2011, T3N1M0 stage 3. Left Hemi very high up and down below.

    I believe in living life to the fullest each day possible and ,my motto is "one day at a time".

    I am nervous for every CTscan, CEA test and now a bonescan, but keep those things to myself, there are people

    who are fighting the hard fight, who need our love and attention more then I do.

    Hugs to all,

    Marjan

    Dear Marjan,

    I myself enjoy every little input, little personal events, trips etc. people did or doing. Imagine if all we talked about was cancer. Then this forum would be a very dark place.

    I think if a fighter or a survival has anything to say here is an inspiration to most, because it makes us feel normal. Some people say " I have nothing to say, because other people said it before". Well that's ok. But look at how many good wishes people get when they go on a trip during a chemo break. Or express their desire and hope to see their nephew's graduation. 

    It doesn't have to be all cancer. We all love Craig not because he only writes about his struggle, we love him because he tells us a lot of things about his life, aspirations, plans even when he is in very bad shape. Or Joe, who is so vibrant even when he is down. And there are countless people here who will never miss an opportunity to send well wishes to others before scans or tests. Congratulate for good news and comfort after bad news. 

    All I'm saying that the more people participate the better and I would love and encourage healed patients to revisit and show us hope, because as I'm finding out, you can be 20 years NED cancer will still never leave your mind.

    Laz