Do NED patients tend to leave the forum?

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Comments

  • sephie
    sephie Member Posts: 650 Member
    #42
    Clovergirl said:

    I decided to finally chime in......

    I came on this board when I got diagnosed at the end of 2012.  I got incredible information, help, and support from this forum.  It was because of this forum that I was not surprised when things happened to me.  I was prepared from reading posts.  I kind of fell off and stopped posting because I was really sick.  My journey was not a good one.  I decided to come back on and read up on some posts. When I saw this one I wanted to respond.  I was Stage IV.  I had lymph node involvement and also a tumor in the vaginal wall.  I had surgery and then went through the standard protocal.  I had both rounds of chemo and 30 radiation treatments.  The treatment was tought and painful like I expected.  It was the aftermath that really got me though.  Shortly after completing treatment I started having daily fevers and never seemed to be getting better.  I did a couple of stints in the hospital for neutropenia and infection.  After a scan they found that I had an absess in my abdomen. Quite large actually.  Over 5cm.  The absess was from the radiation.  Basicall, a pocket formed in an area where I had radiation.  The absess was a nasty infection.  I was on super duper high powered antibiotics.  I ended up going into kidney failure from the antibiotics.  My kidneys weren't flushing the antibiotics out properly.  Partly because the absess was pushing on the kidney and closing the ureter off. I was off work 7 months.  Sick all the time.  The antibiotics caused alot of vomiting.  I lost 50 pounds.  Soooooo, after being off work 7 months, losing 50 pounds, hospitalized for 57 days (5 different admissions).  I was in the hospital for my birthday, Easter, etc.. I even missed my daughters graduation from High School.  My sister brought her to the hospital after commencement.  I could barely walk from laying around so much.  My muscles just weakened.  I had so many nights on the couch thinking I wasn't going to wake up the next day. I was sick beyond sick for many months.  Then, out of nowhere I literally turned a corner.  They took the picc line out and said I didn't need to give myself IV antibiotics anymore and the next thing I knew I was feeling better.  I went back to work 5 weeks ago.  Full time.  I never even started part time.  I just went full steam ahead.  I've put some weight back on and feel really good. I am back to doing everything normal again.  I can eat anything I want.  I have no bowel issues.  I am on the go constantly.  I visited my daughter at college twice and it's a 3 hour drive.  I had a Petscan and saw both my Rad Oncologist and the chemo Oncologist and the colo rectal surgeon all in the same day about a month ago.  I was told NED.  I almost fell off the chair. My scan was clear.  That was the last thing I expected to hear.  I'm a positive person but I had been through so much and knew I was Stage IV.  I just wasn't optimistic.  For me I just needed a break from cancer.  That's why I stayed off of these boards.  I think sometimes some of us just need to walk away for a bit.  I know I needed to.  I decided to post because I think I'm a good example that you can get better.  Even stage IV people like Horsepad and myself are living proof.  I know reoccurence is likely and I know there are long term side effects etc...  But I'm alive and living very normally.  Very thankful.  Can't say enough about the people on here.  I was private messaging a few people that I met on here and they were so supportive.  I wish the best for all of you and I am definitely here for anyone that needs me. 

    so glad

    thanks for letting us know....what a horrific time you had.....look how good u r now!!!!!!!so unbelievable what all you went thru..... bless  you..... sephie

  • eihtak
    eihtak Member Posts: 1,473 Member
    #43
    Clovergirl said:

    I decided to finally chime in......

    I came on this board when I got diagnosed at the end of 2012.  I got incredible information, help, and support from this forum.  It was because of this forum that I was not surprised when things happened to me.  I was prepared from reading posts.  I kind of fell off and stopped posting because I was really sick.  My journey was not a good one.  I decided to come back on and read up on some posts. When I saw this one I wanted to respond.  I was Stage IV.  I had lymph node involvement and also a tumor in the vaginal wall.  I had surgery and then went through the standard protocal.  I had both rounds of chemo and 30 radiation treatments.  The treatment was tought and painful like I expected.  It was the aftermath that really got me though.  Shortly after completing treatment I started having daily fevers and never seemed to be getting better.  I did a couple of stints in the hospital for neutropenia and infection.  After a scan they found that I had an absess in my abdomen. Quite large actually.  Over 5cm.  The absess was from the radiation.  Basicall, a pocket formed in an area where I had radiation.  The absess was a nasty infection.  I was on super duper high powered antibiotics.  I ended up going into kidney failure from the antibiotics.  My kidneys weren't flushing the antibiotics out properly.  Partly because the absess was pushing on the kidney and closing the ureter off. I was off work 7 months.  Sick all the time.  The antibiotics caused alot of vomiting.  I lost 50 pounds.  Soooooo, after being off work 7 months, losing 50 pounds, hospitalized for 57 days (5 different admissions).  I was in the hospital for my birthday, Easter, etc.. I even missed my daughters graduation from High School.  My sister brought her to the hospital after commencement.  I could barely walk from laying around so much.  My muscles just weakened.  I had so many nights on the couch thinking I wasn't going to wake up the next day. I was sick beyond sick for many months.  Then, out of nowhere I literally turned a corner.  They took the picc line out and said I didn't need to give myself IV antibiotics anymore and the next thing I knew I was feeling better.  I went back to work 5 weeks ago.  Full time.  I never even started part time.  I just went full steam ahead.  I've put some weight back on and feel really good. I am back to doing everything normal again.  I can eat anything I want.  I have no bowel issues.  I am on the go constantly.  I visited my daughter at college twice and it's a 3 hour drive.  I had a Petscan and saw both my Rad Oncologist and the chemo Oncologist and the colo rectal surgeon all in the same day about a month ago.  I was told NED.  I almost fell off the chair. My scan was clear.  That was the last thing I expected to hear.  I'm a positive person but I had been through so much and knew I was Stage IV.  I just wasn't optimistic.  For me I just needed a break from cancer.  That's why I stayed off of these boards.  I think sometimes some of us just need to walk away for a bit.  I know I needed to.  I decided to post because I think I'm a good example that you can get better.  Even stage IV people like Horsepad and myself are living proof.  I know reoccurence is likely and I know there are long term side effects etc...  But I'm alive and living very normally.  Very thankful.  Can't say enough about the people on here.  I was private messaging a few people that I met on here and they were so supportive.  I wish the best for all of you and I am definitely here for anyone that needs me. 

    Clovergirl.....

    Wow.....what a year you have had. The highs and lows of this life are amazing. So glad things are going well for you now, and thank you so much for your encouraging post.

  • z
    z Member Posts: 1,414 Member
    #44
    Clovergirl said:

    I decided to finally chime in......

    I came on this board when I got diagnosed at the end of 2012.  I got incredible information, help, and support from this forum.  It was because of this forum that I was not surprised when things happened to me.  I was prepared from reading posts.  I kind of fell off and stopped posting because I was really sick.  My journey was not a good one.  I decided to come back on and read up on some posts. When I saw this one I wanted to respond.  I was Stage IV.  I had lymph node involvement and also a tumor in the vaginal wall.  I had surgery and then went through the standard protocal.  I had both rounds of chemo and 30 radiation treatments.  The treatment was tought and painful like I expected.  It was the aftermath that really got me though.  Shortly after completing treatment I started having daily fevers and never seemed to be getting better.  I did a couple of stints in the hospital for neutropenia and infection.  After a scan they found that I had an absess in my abdomen. Quite large actually.  Over 5cm.  The absess was from the radiation.  Basicall, a pocket formed in an area where I had radiation.  The absess was a nasty infection.  I was on super duper high powered antibiotics.  I ended up going into kidney failure from the antibiotics.  My kidneys weren't flushing the antibiotics out properly.  Partly because the absess was pushing on the kidney and closing the ureter off. I was off work 7 months.  Sick all the time.  The antibiotics caused alot of vomiting.  I lost 50 pounds.  Soooooo, after being off work 7 months, losing 50 pounds, hospitalized for 57 days (5 different admissions).  I was in the hospital for my birthday, Easter, etc.. I even missed my daughters graduation from High School.  My sister brought her to the hospital after commencement.  I could barely walk from laying around so much.  My muscles just weakened.  I had so many nights on the couch thinking I wasn't going to wake up the next day. I was sick beyond sick for many months.  Then, out of nowhere I literally turned a corner.  They took the picc line out and said I didn't need to give myself IV antibiotics anymore and the next thing I knew I was feeling better.  I went back to work 5 weeks ago.  Full time.  I never even started part time.  I just went full steam ahead.  I've put some weight back on and feel really good. I am back to doing everything normal again.  I can eat anything I want.  I have no bowel issues.  I am on the go constantly.  I visited my daughter at college twice and it's a 3 hour drive.  I had a Petscan and saw both my Rad Oncologist and the chemo Oncologist and the colo rectal surgeon all in the same day about a month ago.  I was told NED.  I almost fell off the chair. My scan was clear.  That was the last thing I expected to hear.  I'm a positive person but I had been through so much and knew I was Stage IV.  I just wasn't optimistic.  For me I just needed a break from cancer.  That's why I stayed off of these boards.  I think sometimes some of us just need to walk away for a bit.  I know I needed to.  I decided to post because I think I'm a good example that you can get better.  Even stage IV people like Horsepad and myself are living proof.  I know reoccurence is likely and I know there are long term side effects etc...  But I'm alive and living very normally.  Very thankful.  Can't say enough about the people on here.  I was private messaging a few people that I met on here and they were so supportive.  I wish the best for all of you and I am definitely here for anyone that needs me. 

    Clovergirl

    Hello, Thank you for sharing your experience with anal cancer.  It is very inspiring that you are ned after all you have been through.  I am so happy you were able to turn the corner and resume your life.  May you continue to have great news and I wish you well.  Smile Lori

  • Marynb
    Marynb Member Posts: 1,118
    #45
    Clovergirl said:

    I decided to finally chime in......

    I came on this board when I got diagnosed at the end of 2012.  I got incredible information, help, and support from this forum.  It was because of this forum that I was not surprised when things happened to me.  I was prepared from reading posts.  I kind of fell off and stopped posting because I was really sick.  My journey was not a good one.  I decided to come back on and read up on some posts. When I saw this one I wanted to respond.  I was Stage IV.  I had lymph node involvement and also a tumor in the vaginal wall.  I had surgery and then went through the standard protocal.  I had both rounds of chemo and 30 radiation treatments.  The treatment was tought and painful like I expected.  It was the aftermath that really got me though.  Shortly after completing treatment I started having daily fevers and never seemed to be getting better.  I did a couple of stints in the hospital for neutropenia and infection.  After a scan they found that I had an absess in my abdomen. Quite large actually.  Over 5cm.  The absess was from the radiation.  Basicall, a pocket formed in an area where I had radiation.  The absess was a nasty infection.  I was on super duper high powered antibiotics.  I ended up going into kidney failure from the antibiotics.  My kidneys weren't flushing the antibiotics out properly.  Partly because the absess was pushing on the kidney and closing the ureter off. I was off work 7 months.  Sick all the time.  The antibiotics caused alot of vomiting.  I lost 50 pounds.  Soooooo, after being off work 7 months, losing 50 pounds, hospitalized for 57 days (5 different admissions).  I was in the hospital for my birthday, Easter, etc.. I even missed my daughters graduation from High School.  My sister brought her to the hospital after commencement.  I could barely walk from laying around so much.  My muscles just weakened.  I had so many nights on the couch thinking I wasn't going to wake up the next day. I was sick beyond sick for many months.  Then, out of nowhere I literally turned a corner.  They took the picc line out and said I didn't need to give myself IV antibiotics anymore and the next thing I knew I was feeling better.  I went back to work 5 weeks ago.  Full time.  I never even started part time.  I just went full steam ahead.  I've put some weight back on and feel really good. I am back to doing everything normal again.  I can eat anything I want.  I have no bowel issues.  I am on the go constantly.  I visited my daughter at college twice and it's a 3 hour drive.  I had a Petscan and saw both my Rad Oncologist and the chemo Oncologist and the colo rectal surgeon all in the same day about a month ago.  I was told NED.  I almost fell off the chair. My scan was clear.  That was the last thing I expected to hear.  I'm a positive person but I had been through so much and knew I was Stage IV.  I just wasn't optimistic.  For me I just needed a break from cancer.  That's why I stayed off of these boards.  I think sometimes some of us just need to walk away for a bit.  I know I needed to.  I decided to post because I think I'm a good example that you can get better.  Even stage IV people like Horsepad and myself are living proof.  I know reoccurence is likely and I know there are long term side effects etc...  But I'm alive and living very normally.  Very thankful.  Can't say enough about the people on here.  I was private messaging a few people that I met on here and they were so supportive.  I wish the best for all of you and I am definitely here for anyone that needs me. 

    Clover!
    You have been through so much! i am so glad to hear that you have turned the corner and are so active. Thank God!!!! It is so good to hear from you and know that you are doing well.
  • pializ
    pializ Member Posts: 508 Member
    #46
    Marynb said:

    Clover!
    You have been through so much! i am so glad to hear that you have turned the corner and are so active. Thank God!!!! It is so good to hear from you and know that you are doing well.

    Clover girl

    I am so glad you are finally feeling well, & well enough to resume working full time. Your journey has been harsh to say the least. But, hey! You survived it& moving forward at some speed. So happy for your return to health. Long may it stay that way.

    Liz

  • LaCh
    LaCh Member Posts: 557
    #47
    Ip

    There is no right or wrong, you should do what feels right to you. That said, I don't think that your question was about right or wrong but what most people do. I originally accessed this website because I wanted information from people who had gone through the treatment that I was about to have (I finished at the end of January 2013) rather than an oncologist who had little or no idea of what the experience was like, except as an observer. The site was quite useful and a ood source of information, but once I was finished with treatment, I saw no need to return. My cancer was soemthing that I had, I dealt with and I moved on from. As I felt it should be, and as I wanted it to be. I don't identify with cancer any more than I identify withy any other event in my life, and certainly don't think of myself as a cancer survivor. I don't think  of myself as someone who had cancer. I don't think of myself as anything with the word cancer in it, just as I don't identify myself as someone who had the flu or asthma or an appendectomy. "I am" is not equal to "I had" (cancer) at least it isn't for me. I was glad for the forum when I needed it and glad to  leave it. This is the first time that I checked back--on a whim really--since I finished treatment. I got on with my life and no longer had any reason to return here.  That said, everyone is different, everyone feels differently and there are no right ways or wrong ways. You should return to the forum until you no longer want  to or need to and what others do shouldn't influence your decision.   

  • sandysp
    sandysp Member Posts: 868 Member
    #48
    jcruz said:

    wishing you well

    I'm so glad to know that you are getting help for your depression.  I've been seeing a therapist since May when I could feel myself sinking under that sadness and despair, mourning the loss of the woman I was before cancer.  I don't know if I'd be getting through these days without her help.

    Take care,

    Janet

    mourning the loss of the woman I was

    That was eloquent. I know that we all experienced a life change from our illness and treatment. There is a kind of death in that. My husband certainly experienced it. We both focus on relishing each moment, living day to day with less drama and more gratitude.

    Of course, my meds are helping as is bible study, the work I love and exercise.

    Sincerely,

    Sandy

  • sandysp
    sandysp Member Posts: 868 Member
    #49
    Clovergirl said:

    I decided to finally chime in......

    I came on this board when I got diagnosed at the end of 2012.  I got incredible information, help, and support from this forum.  It was because of this forum that I was not surprised when things happened to me.  I was prepared from reading posts.  I kind of fell off and stopped posting because I was really sick.  My journey was not a good one.  I decided to come back on and read up on some posts. When I saw this one I wanted to respond.  I was Stage IV.  I had lymph node involvement and also a tumor in the vaginal wall.  I had surgery and then went through the standard protocal.  I had both rounds of chemo and 30 radiation treatments.  The treatment was tought and painful like I expected.  It was the aftermath that really got me though.  Shortly after completing treatment I started having daily fevers and never seemed to be getting better.  I did a couple of stints in the hospital for neutropenia and infection.  After a scan they found that I had an absess in my abdomen. Quite large actually.  Over 5cm.  The absess was from the radiation.  Basicall, a pocket formed in an area where I had radiation.  The absess was a nasty infection.  I was on super duper high powered antibiotics.  I ended up going into kidney failure from the antibiotics.  My kidneys weren't flushing the antibiotics out properly.  Partly because the absess was pushing on the kidney and closing the ureter off. I was off work 7 months.  Sick all the time.  The antibiotics caused alot of vomiting.  I lost 50 pounds.  Soooooo, after being off work 7 months, losing 50 pounds, hospitalized for 57 days (5 different admissions).  I was in the hospital for my birthday, Easter, etc.. I even missed my daughters graduation from High School.  My sister brought her to the hospital after commencement.  I could barely walk from laying around so much.  My muscles just weakened.  I had so many nights on the couch thinking I wasn't going to wake up the next day. I was sick beyond sick for many months.  Then, out of nowhere I literally turned a corner.  They took the picc line out and said I didn't need to give myself IV antibiotics anymore and the next thing I knew I was feeling better.  I went back to work 5 weeks ago.  Full time.  I never even started part time.  I just went full steam ahead.  I've put some weight back on and feel really good. I am back to doing everything normal again.  I can eat anything I want.  I have no bowel issues.  I am on the go constantly.  I visited my daughter at college twice and it's a 3 hour drive.  I had a Petscan and saw both my Rad Oncologist and the chemo Oncologist and the colo rectal surgeon all in the same day about a month ago.  I was told NED.  I almost fell off the chair. My scan was clear.  That was the last thing I expected to hear.  I'm a positive person but I had been through so much and knew I was Stage IV.  I just wasn't optimistic.  For me I just needed a break from cancer.  That's why I stayed off of these boards.  I think sometimes some of us just need to walk away for a bit.  I know I needed to.  I decided to post because I think I'm a good example that you can get better.  Even stage IV people like Horsepad and myself are living proof.  I know reoccurence is likely and I know there are long term side effects etc...  But I'm alive and living very normally.  Very thankful.  Can't say enough about the people on here.  I was private messaging a few people that I met on here and they were so supportive.  I wish the best for all of you and I am definitely here for anyone that needs me. 

    Thank you Clovergirl

    What a story. I would have been despondent. I only come onto these boards when I am feeling overwhelmed or terrific. Today, like you I feel terrific and am very, very grateful.

    All the best,

    Sandy

  • sandysp
    sandysp Member Posts: 868 Member
    #50
    LaCh said:

    Ip

    There is no right or wrong, you should do what feels right to you. That said, I don't think that your question was about right or wrong but what most people do. I originally accessed this website because I wanted information from people who had gone through the treatment that I was about to have (I finished at the end of January 2013) rather than an oncologist who had little or no idea of what the experience was like, except as an observer. The site was quite useful and a ood source of information, but once I was finished with treatment, I saw no need to return. My cancer was soemthing that I had, I dealt with and I moved on from. As I felt it should be, and as I wanted it to be. I don't identify with cancer any more than I identify withy any other event in my life, and certainly don't think of myself as a cancer survivor. I don't think  of myself as someone who had cancer. I don't think of myself as anything with the word cancer in it, just as I don't identify myself as someone who had the flu or asthma or an appendectomy. "I am" is not equal to "I had" (cancer) at least it isn't for me. I was glad for the forum when I needed it and glad to  leave it. This is the first time that I checked back--on a whim really--since I finished treatment. I got on with my life and no longer had any reason to return here.  That said, everyone is different, everyone feels differently and there are no right ways or wrong ways. You should return to the forum until you no longer want  to or need to and what others do shouldn't influence your decision.   

    Support groups

    In 1993, when I got the phone call from my doctor diagnosing me with my second (albeit incorrect) cancer diagnosis, my friend signed me up with an Oncologist who was recommended in Bernie Siegal's books. Bernie Siegal is all about not being your disease. He was the only Doctor recommended in Seattle, where I lived at the time.

    This Oncologist invited me to join a support group, where I went during this time of "do I have cancer, or don't I" which went on for almost a year.

    There I learned from them that people who use support groups to help themselves and others have much better statistics than those who don't.

    I am here to learn but I am also here to share and give support. It is healing for me and I actually feel, perhaps because of the age that I am, that being here for others is one way my life has more meaning. It's not about the cancer, it's about having a purposeful life. More purposeful than it was before. I also am hanging out to dry still with lung spots which I believe in my heart are benign.

    Cancer doesn't define me, but in a way, the service that each of us provides here does.  I hope, like Martha, I keep coming back, even if just to "peak."

    Sincerely,

    Sandy

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