Do NED patients tend to leave the forum?

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.

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 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. 

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 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! 

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

islandgirlculebra said:

Thanks Martha

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

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

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

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!

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 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. 

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!