Do NED patients tend to leave the forum?

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. 

I can't answer these specific questions, because I am brand new here. But I will say that the experiences and insights of people who have fought this battle are encouraging and invaluable. The stories of struggles are important so people don't feel alone. The stories of successes are important to give us all hope. So while I understand the need for perspective and to move on, I also want to express my appreciation for those who have shown so much compassion and commitment in their posts.

Hi, like Martha, I too believe in paying it forward throughout life. I have been here about 2yrs and finished treatment for anal cancer a little short of 2.5yrs. ago. We have so very much to learn from others experiences, and really wish I had found this before or during treatment, but the support I have received during recovery has been invaluable. I think in time, we tend to post less often and maybe just lurk in the background reading a little more, and then every once in a while have something to add to the current discussion. I find it encouraging to hear from people who have been well for a long time so hope to be one of those who pops in for many many years. We all share common life-long side effects unique to this treatment, and the need for help from others in the same boat will always be there. Life happens, and we do move on, but this experience has transformed us......oddly in some ways for the better, and it brings me comfort to stay in touch with those who have been such a huge part of my life as it now is! 

Marynb said:

I can tell you that until I
I can tell you that until I found this Board, I felt very alone and in the dark. This cancer is one that nobody talks about. I have heard numerous times that anal cancer is a disease that gay men get. There is misinformation and lack of any information, even among doctors.

Martha, you have a wealth of knowledge that is so important to so many! I hope that you do move on with your life, but still have some time for this Board.

I am not sure that I am Ned at all, and since I didn't have scans until recently, it is hard to know if I ever was.

Lori and Marynb--Thank you for your kind words.  I appreciate knowing that something I've said on this board over the years has made a difference.  I do not intend to totally disappear from this site.  The only way I could ever do that is if we all remain cancer free and that no newbies join this group.  The odds are that won't happen, unfortunately.  I am very active on 3 different sites and some days it can be quite time-consuming.  I guess I just need to be less wordy!  When I initially told my husband that I was going to quit posting on the boards, he said "no you're not."  He knows me better than anyone else and I'm sure he's right.  I find it difficult to not help someone who comes here for information and support.  I'll just try to keep things short and to the point!  Thank you again! 

Lorikat said:

I am NED and try not to visit

I am NED and try not to visit the forum everyday.  I have the very hardest time believing that I AM NED.  I still Can't make a whole day without the fatigue factoring in.  I have proctitis from radiation and Lord knows that is certainly a reminder.  Not being able to leave home in the morning until after BM.  Y'all know the rest.......  I will be two years NED in November and hope that makes it more real.  All that said, I am better!  My mental outlook is better.  I exercise more (but still not a lot LOL!).  

i think sometimes it scares us to come on the forum....  And sometimes we feel sooooo helpless!   We want to hug your necks, reassure you and your family.  Everyone on this forum is REAL!  But all we can really do is pray for all...  Including ourselves.

Ok....enough for me...  Blessings to everyone..

 

 

first, thanks to martha for all her knowledge and we all need you.....I was properly diagnosed as stage 2, no nodes, no metastisis in march 2009 but had been having problems for 1.5 years but misdiagnosed as hemmy.....that said ,  i am NED now and I am 4 years post tx...... i want to keep us reporting so that we know how this is after 5 years, 6 years, 8 years, 10 years..... MDA has no info for 10 years  and they need  it.....i , also, still have radiation proctitis ( going to get anoscope next monday due to increased bleeding).....and have to get ready and finished with BM's in am before leaving home..... this will , i think, be forever......but can always be worse...... i am still tired by 5 pm ....BUT i am soooooo grateful for how far i have come.... oh, i also , still have pain and inflammation on left side of anus ..can not sit for longer than 2 hours in car,  .tumor was on right side.....so we are all different and heal differently.....so let us keep up the info to see how far we can go in life with this diagnosis....... thx to all.....sephie

mp327 said:

sephie

Thank you very much.  I am sorry you are having some bleeding, but as we know, this can be totally normal after the treatment we've had.  I hope that your anoscope exam will be normal and show that all is well. 

As for tracking cancer survival, I never quite understood the 5-year time frame--who decided that was the magic number and why aren't people followed for a greater length of time.  I always am happy to hear from someone who is a long-term survivor.  It does give us hope.  I have a follow-up exam with my colorectal doctor on September 3rd. and if she gives me the all clear, I will officially be a 5-year survivor on Sept. 9th., which was my end of treatment date back in 2008. 

Congrats on being 4 years post tx! 

I am NED when it comes to my anus but my lungs are still being watched closely due to a hiliar lymph node appearing brightly and the spot I have had all along increasing in size by three times. The Pulmonologist was going to review the scan. I haven't heard from him and hope that no news is good news. He said the tiny spot on my left lung had been there but not mentioned but the Hiliar Lymph node appearance was new to his recollection but he would know more when he reviewed everything again. Oddly I have not called him.

I am now on medication for my sadness and despair over the loss of my hearing which felt like the final straw. But now that I have been on the medication for a few days, I realize over these last years I wasn't ever doing near as well as I thought I was handling the stress of illness and other events of my life. I am sorry I waited so long to see a Psychiatrist. I am also going to a Psychologist who is doing cognitive therapy. She recommended a book called "Feeling Good." By a Dr. Burns. I downloaded that book into my Kindle and bought his workbook also. It feels good to take control of something.

I was just reading some of Joanne's posts from years back on the boards. I am so glad we are talking about her. She is one of the Saints I hope to meet one day when this pilgrimage has come to an end. I don't know what I would have done had she not done what she did. I will forever be grateful.

Sincerely,

Sandy

It helps me to hear about survivors being NED.  I've seen people say they've been 9 or 10 years post treatment on this board and that really gives me hope when I need it most.  I hope that those who are "cured" and move on will continue to post periodically to let the "newbies" know there is life after treatment and although we may have long term side effects, they are "normal" and managable.  I'm glad this board is here and that you all share your knowledge & experiences, there is no where else to get this sort of information about anal cancer.

Just as a bit of hope and encouragement.....there is a man in my colostomy support group that was treated for Anal Cancer Stage 3 twelve years ago!! He is doing wonderful and has been working on heavy machinery for the past 11yrs. This is an in person support group and he is not interested in joining this forum but is a true inspiration to me. He struggles with many of the same issues we often discuss but has really continued to live his life to the fullest and appreciate every day!

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.

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

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.