Do NED patients tend to leave the forum?

2

Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #22
    jcruz said:

    painting with broad strokes

    Participation in any group whether it is in-person or on-line is fluid.  Energy levels, interest in a particular topic, interested in a particular person, whether you're an extrovert or an introvert, all this come into play here and in real life.  I think that dividing us into your defininitions of givers and takers is simplistic and unfair.  I hope you didn't mean to be critical of the way that people live here.

    Not at all.

    I don't see "takers" as selfish. Takers are the best listeners and receivers that "givers" are usually bad at. I don't judge anybody here, I just want to point out that participation is so important to support each other and the newcomers.

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #23
    jcruz said:

    painting with broad strokes

    Participation in any group whether it is in-person or on-line is fluid.  Energy levels, interest in a particular topic, interested in a particular person, whether you're an extrovert or an introvert, all this come into play here and in real life.  I think that dividing us into your defininitions of givers and takers is simplistic and unfair.  I hope you didn't mean to be critical of the way that people live here.

    Well said jcruz!

    I agree.

     

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #24
    horsepad said:

    survivor

    I am a stage four survivor.  I was diagnosed in August 2011.  The cancer had spread to my lymph nodes and liver.  After treatment, hospitalization for side effects, then a liver resection I am still alive and feel good.  No side effects whatsoever.  I read the forum everyday but don't post much.  I think because I am not good with words and most people here are better.    I am here because the good Lord had mercy on me and will be grateful to Godvery day for saving me.  I am always searching for stage four stories because I want the comfort of knowing someone else stage four beside myself is still alive.  Don't see that much but keep looking.

    Thank You, horsepad!

    Thanks for sharing your good news - your story inspires me!  This is what I like to hear and helps me to see that this diagnosis is not a death sentence. I am happy for you and glad the Lord has blessed you! 

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #25
    horsepad said:

    survivor

    I am a stage four survivor.  I was diagnosed in August 2011.  The cancer had spread to my lymph nodes and liver.  After treatment, hospitalization for side effects, then a liver resection I am still alive and feel good.  No side effects whatsoever.  I read the forum everyday but don't post much.  I think because I am not good with words and most people here are better.    I am here because the good Lord had mercy on me and will be grateful to Godvery day for saving me.  I am always searching for stage four stories because I want the comfort of knowing someone else stage four beside myself is still alive.  Don't see that much but keep looking.

    horsepad

    I'm so glad you continue to do well!  I, too, wish people like you, who were stage 4 and are doing well, would post on this board.  It is so encouraging to hear their stories.  I wish you all the best and hope you'll continue to be NED! 

  • z810840b
    z810840b Member Posts: 207 Member
    #26
    mp327 said:

    Laz

    You have asked two really good questions.  I have been on this board since January 2010 and may be one of the old-timers.  Many people have come and gone on here, I believe mostly because they recover from treatment and get on with life, choosing not to keep talking about cancer.  I have often wanted to do that myself and with my 5-year post-treatment anniversary coming up in less than 2 weeks, I'm hoping to back away from the websites (I'm on 3) and not be so active.  I really need to get some other things accomplished in my life.  That said, I would never ignore someone who is in great need of support, so I will still be checking in from time to time.  There are so many knowledgeable people on this board who give great advice and support, so I feel I can take a break.  One can only talk about butt issues for so long!

    As for who on this board has left the greatest impression on me, that would have to be Joanne, who is the wonderful person who asked ACS to add an anal cancer group on this website.  She is a hero to me.  Even when she was battling her disease, she looked out for the rest of us.  She recognized that there were few places for anal cancer patients/survivors to turn to for support.  Sadly, she lost her battle, but I know she would be happy knowing that this board continues to be very active and its members keep supporting each other.

    I do believe in paying it forward.  However, I think there has to be a happy medium between being consumed with participation on support sites and living one's life. 

    Time to move on

    hi marhta- this is an interesting topic because i have thought about you and others who are "regulars" here..I needed to move on...stop thinking of cancer all the time...i wanted to enjoy this time of my life..I remeber when i was going through treatment..i just wanted my life back.And i did...sure there are physical and mental scars left from the war...but all in all i cant complain.I am 5 years NED and grateful to be enjoying life...I do come on here from time to time to peak....but as a usual diet...i know its not good for me.i used to talk alot about my cancer experience...not any more.When others talk about people they know who are going through cancer..sorry..i dont want to hear it.im polite,but i change the subject quickly.i need some peaceful time..i now do things i enjoy like golf and interior design.i want to focus on the positive...Im sure i am rambling..sorry for that.In the back of my mind , i am sure cancer will get me in the end..but for now ..i am running as fast as i can. Love to you Martha...alyse

  • mp327
    mp327 Member Posts: 4,440 Member
    #27
    z810840b said:

    Time to move on

    hi marhta- this is an interesting topic because i have thought about you and others who are "regulars" here..I needed to move on...stop thinking of cancer all the time...i wanted to enjoy this time of my life..I remeber when i was going through treatment..i just wanted my life back.And i did...sure there are physical and mental scars left from the war...but all in all i cant complain.I am 5 years NED and grateful to be enjoying life...I do come on here from time to time to peak....but as a usual diet...i know its not good for me.i used to talk alot about my cancer experience...not any more.When others talk about people they know who are going through cancer..sorry..i dont want to hear it.im polite,but i change the subject quickly.i need some peaceful time..i now do things i enjoy like golf and interior design.i want to focus on the positive...Im sure i am rambling..sorry for that.In the back of my mind , i am sure cancer will get me in the end..but for now ..i am running as fast as i can. Love to you Martha...alyse

    Hi alyse!

    It's SO good to hear from you, my twin!  I am SO glad you are doing well, enjoying the things you love doing, and just living life.  I can understand not wanting to talk about cancer anymore.  I will get to that point sooner or later.  I have lots of things in my life that I want to do and none of them involve cancer.  If you are golfing, that must mean your hip is doing well--I hope so!  I am still running, but this summer I have not put in as many miles, as I've been painting the interior of my house--all the bedrooms.  It has taken all summer, but is now done, I'm happy to say! 

    Okay, just a little on the topic of cancer.  I saw my colorectal doctor this past Tuesday and she said everything looked great.  So on September 9th., I will be 5 years post-treatment.  My husband is taking me out to a very fancy restaurant on Saturday night so I'm excited about that.  As you know yourself, it's a long haul to get to this point, but what a great feeling when you do!  Now that I've hit the 5-year mark, I am going to have to shift my focus a bit.  My mom has dementia and is currently in assisted living 600 miles away.  We may be bringing her here to stay with us when she reaches the point that she can no longer function well enough to be in assisted living.  We would have her with us until she gets to the point where she must be in memory care.  I have been spending a lot of time going back and forth and it's exhausting.  I guess God kept me around for the last 5 years so I could take care of my mother.

    Well, my sweet friend, as always it's great to hear from you.  I'm glad you still come here to check on us and I hope you'll post an update from time to time.  I get worried when I don't hear from my friends in awhile.  Take care and know that I wish you continued good health and much happiness! 

    Hugs!

    Martha

  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    #28
    mp327 said:

    horsepad

    I'm so glad you continue to do well!  I, too, wish people like you, who were stage 4 and are doing well, would post on this board.  It is so encouraging to hear their stories.  I wish you all the best and hope you'll continue to be NED! 

    NEDs Leaving........

    Just wanted to comment that I'm one of those "NEDs" who doesn't come on here as often as I used to.... Mine was Stage III with lymph node involvement, and I celebrated my one-year anniversary of being cancer free in July..... I don't come on this board nearly as often as I used to, mainly because I feel it's better for me emotionally, to try to keep my thoughts away from thoughts of cancer. I still have fear that it will come back - I have periods of time when I feel very positive that it won't, but also periods of worry and paranoia..... I very much respect, admire and appreciate other NEDs on this forum who repeatedly help the newbies who are so scared and upset...... It is a very giving and self-less thing to do, and I actually do feel guilty that I'm not doing it.  (I do volunteer for Meals on Wheels, and I have sort of "adopted" one person who has many health issues, little money and no close family nearby to help her....) I never did this before I got cancer - this is my way of "giving back" to thank the Good Lord for my NED status......... I think the NEDs who frequent this site and help others are doing the same and are just fantastic people. And those who are NOT NED and are still reaching out to help others in spite of their OWN pain and suffering - just awesome people...........Much love to all of you.....

  • mp327
    mp327 Member Posts: 4,440 Member
    #29
    islandgirlculebra said:

    NEDs Leaving........

    Just wanted to comment that I'm one of those "NEDs" who doesn't come on here as often as I used to.... Mine was Stage III with lymph node involvement, and I celebrated my one-year anniversary of being cancer free in July..... I don't come on this board nearly as often as I used to, mainly because I feel it's better for me emotionally, to try to keep my thoughts away from thoughts of cancer. I still have fear that it will come back - I have periods of time when I feel very positive that it won't, but also periods of worry and paranoia..... I very much respect, admire and appreciate other NEDs on this forum who repeatedly help the newbies who are so scared and upset...... It is a very giving and self-less thing to do, and I actually do feel guilty that I'm not doing it.  (I do volunteer for Meals on Wheels, and I have sort of "adopted" one person who has many health issues, little money and no close family nearby to help her....) I never did this before I got cancer - this is my way of "giving back" to thank the Good Lord for my NED status......... I think the NEDs who frequent this site and help others are doing the same and are just fantastic people. And those who are NOT NED and are still reaching out to help others in spite of their OWN pain and suffering - just awesome people...........Much love to all of you.....

    islandgirlculebra

    I'm sure many people feel the way you do and I hope you will not feel guilty about not coming here on a regular basis.  We all have to handle this in our own way.  I believe every human being who has been blessed should give back, but there are so many ways to do that, as you have mentioned.  You are doing good things for others and that's all that matters.  Congratulations on hitting the one-year milestone--that's fantastic.  I wish you many, many more anniversaries!  Take care!

  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    #30
    mp327 said:

    islandgirlculebra

    I'm sure many people feel the way you do and I hope you will not feel guilty about not coming here on a regular basis.  We all have to handle this in our own way.  I believe every human being who has been blessed should give back, but there are so many ways to do that, as you have mentioned.  You are doing good things for others and that's all that matters.  Congratulations on hitting the one-year milestone--that's fantastic.  I wish you many, many more anniversaries!  Take care!

    Thanks Martha

    Thanks so much. As always, you are a sweetie and such an inspiration to me.

  • lizdeli
    lizdeli Member Posts: 569 Member
    #31
    islandgirlculebra said:

    Thanks Martha

    Thanks so much. As always, you are a sweetie and such an inspiration to me.

    NEDs leaving

     

     

     

     

     

     

     

     

     

     

     

  • lizdeli
    lizdeli Member Posts: 569 Member
    #32
    islandgirlculebra said:

    Thanks Martha

    Thanks so much. As always, you are a sweetie and such an inspiration to me.

    Not sure where my post went....so I'll try again!

    I did add a post but it isn't showing up. So here goes:

    For those of you that don't know me, I was diagonosed in July 2009 as Stage III and finshed treatment on 9/11/09.  I just reached my 4 year NED mark.  Martha, congratulations on your 5 year NED mark that makes my heart smile!  Alyse, so glad to hear from you and that you are doing well!

    There are two people that have been extremely influential on this site, though every post from every person is valued.  First of all, JoAnn who had the vision and committment to get this site going. Sadly she is no longer with us but she lives on through this site and through those that loved her. Martha is the other person.  Martha has been her consistenty, always there for us offering encouragement, emphathy, information and friendship.  Martha you are just awesome!

    As for NEDs leaving, I personally have not left but I fade in and out. I lead a cancer support group at church and I am also an Anderson Network (MD Anderson) volunteer.  At times it does seem like the cancer topic is boxing me in and it can get overwhelming.  But I remember what it was like when I was first diagonsed and how scared and lonely I was.  So I bounce right back.  I also value other opinions about the need to step away from it all in order to move on.

    So to summarize, we will have some NEDers who are here all the time, some who fade in and out and some who chose to let go for their own well being.  The good news is that our NED populaton is growing and there will be more and more survivors here ready to help others.

    My recent lapse here was due to changing jobs, taking a much needed vacation to the Greek Islands and focusing on other support responsibilities.  But I'll be here more often.

    My best to all,

    Liz

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #33
    lizdeli said:

    Not sure where my post went....so I'll try again!

    I did add a post but it isn't showing up. So here goes:

    For those of you that don't know me, I was diagonosed in July 2009 as Stage III and finshed treatment on 9/11/09.  I just reached my 4 year NED mark.  Martha, congratulations on your 5 year NED mark that makes my heart smile!  Alyse, so glad to hear from you and that you are doing well!

    There are two people that have been extremely influential on this site, though every post from every person is valued.  First of all, JoAnn who had the vision and committment to get this site going. Sadly she is no longer with us but she lives on through this site and through those that loved her. Martha is the other person.  Martha has been her consistenty, always there for us offering encouragement, emphathy, information and friendship.  Martha you are just awesome!

    As for NEDs leaving, I personally have not left but I fade in and out. I lead a cancer support group at church and I am also an Anderson Network (MD Anderson) volunteer.  At times it does seem like the cancer topic is boxing me in and it can get overwhelming.  But I remember what it was like when I was first diagonsed and how scared and lonely I was.  So I bounce right back.  I also value other opinions about the need to step away from it all in order to move on.

    So to summarize, we will have some NEDers who are here all the time, some who fade in and out and some who chose to let go for their own well being.  The good news is that our NED populaton is growing and there will be more and more survivors here ready to help others.

    My recent lapse here was due to changing jobs, taking a much needed vacation to the Greek Islands and focusing on other support responsibilities.  But I'll be here more often.

    My best to all,

    Liz

     

    Hi Liz!

    I am so glad that you are one of our NEDers who comes back here!  Your support is invaluable to so many people on this site!  And I want to thank you for your kind words.  I do not feel that I do anything in this group that others do not do, but it's nice to know I'm appreciated!  We all are indebited to JoAnn for putting in a request to ACS on the behalf of all anal cancer patients and survivors for getting this support site established.  While there are other support sites, I feel that this one offers the best and there are so many great people here!

    I am so glad to hear that you are offering support at MDA and your church.  That is wonderful of you to do that.  I think we all handle this hand of cards dealt to us in our own ways.  It's great when people can give back, but I also understand having to just back away from it too. 

    I know you had a lovely time in Greece--you really deserved that vacation!  I hope the new job is going well.  I will certainly look forward to seeing you here more often!

    Thanks again for your precious friendship and kind words!

  • Marynb
    Marynb Member Posts: 1,118
    #34
    horsepad said:

    survivor

    I am a stage four survivor.  I was diagnosed in August 2011.  The cancer had spread to my lymph nodes and liver.  After treatment, hospitalization for side effects, then a liver resection I am still alive and feel good.  No side effects whatsoever.  I read the forum everyday but don't post much.  I think because I am not good with words and most people here are better.    I am here because the good Lord had mercy on me and will be grateful to Godvery day for saving me.  I am always searching for stage four stories because I want the comfort of knowing someone else stage four beside myself is still alive.  Don't see that much but keep looking.

    Horsepad
    You are an inspiration! Every voice here matters and nobody is better at words than anybody else because every story is worth telling!
  • cap630
    cap630 Member Posts: 151 Member
    #35
    Marynb said:

    Horsepad
    You are an inspiration! Every voice here matters and nobody is better at words than anybody else because every story is worth telling!

    NED visiting website

    This month I will be NED for two years. I do visit the site from time to time.  So many wonderful people with great advice that I don't feel I have much more to share.  Always in my prayers ~Carol

  • mp327
    mp327 Member Posts: 4,440 Member
    #36
    cap630 said:

    NED visiting website

    This month I will be NED for two years. I do visit the site from time to time.  So many wonderful people with great advice that I don't feel I have much more to share.  Always in my prayers ~Carol

    cap630

    Congratulations on reaching the 2-year mark!  That's a very important milestone in that there is a marked decrease in the chance of recurrence after 2 years.  I hope you will be taking a little time to celebrate.  I'm glad you still check in with us once in awhile.  Take care and I wish you continued NED!

  • Lorikat
    Lorikat Member Posts: 681 Member
    #37
    lizdeli said:

    Not sure where my post went....so I'll try again!

    I did add a post but it isn't showing up. So here goes:

    For those of you that don't know me, I was diagonosed in July 2009 as Stage III and finshed treatment on 9/11/09.  I just reached my 4 year NED mark.  Martha, congratulations on your 5 year NED mark that makes my heart smile!  Alyse, so glad to hear from you and that you are doing well!

    There are two people that have been extremely influential on this site, though every post from every person is valued.  First of all, JoAnn who had the vision and committment to get this site going. Sadly she is no longer with us but she lives on through this site and through those that loved her. Martha is the other person.  Martha has been her consistenty, always there for us offering encouragement, emphathy, information and friendship.  Martha you are just awesome!

    As for NEDs leaving, I personally have not left but I fade in and out. I lead a cancer support group at church and I am also an Anderson Network (MD Anderson) volunteer.  At times it does seem like the cancer topic is boxing me in and it can get overwhelming.  But I remember what it was like when I was first diagonsed and how scared and lonely I was.  So I bounce right back.  I also value other opinions about the need to step away from it all in order to move on.

    So to summarize, we will have some NEDers who are here all the time, some who fade in and out and some who chose to let go for their own well being.  The good news is that our NED populaton is growing and there will be more and more survivors here ready to help others.

    My recent lapse here was due to changing jobs, taking a much needed vacation to the Greek Islands and focusing on other support responsibilities.  But I'll be here more often.

    My best to all,

    Liz

     

    Liz..you sooo helped me when

    Liz..you sooo helped me when I was a newbie!  You explained things prior to them happening and saved me a lot of fear.  I felt I could (and did) ask you anything.  I'm now at nearly 2 years and you are at 4.  Wow.  You are one of my Heros.  Lori

     

  • Clovergirl
    Clovergirl Member Posts: 48
    #38
    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. 

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #39
    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. 

    Dear Clovergirl,

    That is exactly the reason people need to participate and return the favor once they received. Also your story is very inspirational. Patients need this energy, that no matter how bad things get, there is hope.

    Thank you and do this once in a while when you can offer a helping hand.

    Laz

  • mp327
    mp327 Member Posts: 4,440 Member
    #40
    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

    I am in complete awe of you, considering all you have been through and knowing that you are now NED, back to work, and feeling good!  I want to jump for joy for you!  I want to thank you for coming back here to update us.  If anyone needs any encouragement or hope, your story should help tremendously!  It's good that you have been completely honest and included that there were some really rough times.  I think helps people prepare, should they ever be faced with circumstances similiar to yours.  I hope you'll come here occasionally and let us know how things are going for you.  May you continue to be blessed with NED!

  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    #41
    mp327 said:

    Clovergirl

    I am in complete awe of you, considering all you have been through and knowing that you are now NED, back to work, and feeling good!  I want to jump for joy for you!  I want to thank you for coming back here to update us.  If anyone needs any encouragement or hope, your story should help tremendously!  It's good that you have been completely honest and included that there were some really rough times.  I think helps people prepare, should they ever be faced with circumstances similiar to yours.  I hope you'll come here occasionally and let us know how things are going for you.  May you continue to be blessed with NED!

    Clovergirl

    WOW. I too am in complete AWE of you.  My cancer was advanced also, and your story gives me hope and inspiration. I so fully understand your need to just "get away" and try to separate yourself from cancer. This is such an up and down journey and we all have to find our own way to cope with the emotional and physical aftermath of treatment. Thanks so much for your inspirational post! Best wishes to you for many, many years of health and happiness!

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