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Do NED patients tend to leave the forum?

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

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

 

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

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. 

Jwk7385
Posts: 10
Joined: Aug 2013

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.

Marynb
Posts: 1134
Joined: Aug 2012

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.

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

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! 

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

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's picture
mp327
Posts: 2883
Joined: Jan 2010

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

eihtak
Posts: 828
Joined: Oct 2011

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! 

z's picture
z
Posts: 1249
Joined: May 2009

I have been ned of anal cancer since 6-30-09.  I have been ned from lung cancer since 9-23-10.  Joanne Duke who started this discussion board for us all left an impression.  Martha who always replies to the new comers and gives them the best information ever.  I ususally read the posts everyday to see whats new. Lori

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

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..

 

 

sephie's picture
sephie
Posts: 522
Joined: Apr 2009

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's picture
mp327
Posts: 2883
Joined: Jan 2010

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! 

sandysp's picture
sandysp
Posts: 775
Joined: May 2011

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

 

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

I am glad your doctor is keeping a close watch on the lung nodes.  Also, I'm happy to hear that you are getting help in dealing with everything that has happened to you in the past few years.  You have certainly been through a lot.  And I totally agree with you about Joanne.  She is truly our angel. 

Take care, my friend.  You add so much to this board and I am so fortunate to know you!

jcruz
Posts: 221
Joined: Jan 2013

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

sandysp's picture
sandysp
Posts: 775
Joined: May 2011

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

TraceyUSA
Posts: 135
Joined: May 2013

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.

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

...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

jcruz
Posts: 221
Joined: Jan 2013

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.

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

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
Posts: 135
Joined: May 2013

I agree.

 

pializ
Posts: 258
Joined: Nov 2012

  I know that sometimes I don't comment simply because someone else has usually already given the advice I would have given(except maybe more eloquently) but if I have something useful to add, then I will. I suppose I am one of those people who naturally holds back.  I completed my treatment 25th January,  and taken the scenic route to having my first taste of NED, & start having my next round of tests on Monday. I have noticed that some  who joined this forum at the same time have not commented for a while. They were here for a reason & a season. I respect & appreciate the willingness of everyone here offering support, encouragement & knowledge. What a great bunch of people!!!

eihtak
Posts: 828
Joined: Oct 2011

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!

TraceyUSA
Posts: 135
Joined: May 2013

Thank you for sharing your follow support group member's survival.  Hearing that helps put me in a more postive frame of mind when I start thinking the worst.

horsepad's picture
horsepad
Posts: 82
Joined: Apr 2012

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's picture
lp1964
Posts: 852
Joined: Jun 2013

Believe me when I say it that a little note from you and your journey would mean so much to any of the patients here who are still going through the treatment whether stage 1 or 4. Hearing about the slightest possibility that it is real the kick this disease is invaluable. Unless it's a burden to you please be more active, because your contribution will brighten up the day of a desperate fellow human. Our collective spirite is incredibly powerful and it will lead to more and more success and the ultimate cure.

Thank you,

Laz

TraceyUSA
Posts: 135
Joined: May 2013

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's picture
mp327
Posts: 2883
Joined: Jan 2010

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! 

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

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's picture
mp327
Posts: 2883
Joined: Jan 2010

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's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

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

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

 

 

 

 

 

 

 

 

 

 

 

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

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's picture
mp327
Posts: 2883
Joined: Jan 2010

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!

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

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

 

Marynb
Posts: 1134
Joined: Aug 2012

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

cap630
Posts: 150
Joined: Jul 2011

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's picture
mp327
Posts: 2883
Joined: Jan 2010

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!

Clovergirl
Posts: 47
Joined: Dec 2012

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's picture
lp1964
Posts: 852
Joined: Jun 2013

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's picture
mp327
Posts: 2883
Joined: Jan 2010

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's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

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!

sephie's picture
sephie
Posts: 522
Joined: Apr 2009

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
Posts: 828
Joined: Oct 2011

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's picture
z
Posts: 1249
Joined: May 2009

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
Posts: 1134
Joined: Aug 2012

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
Posts: 258
Joined: Nov 2012

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

sandysp's picture
sandysp
Posts: 775
Joined: May 2011

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

LaCh
Posts: 512
Joined: Dec 2012

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's picture
sandysp
Posts: 775
Joined: May 2011

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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