CSN Login
Members Online: 17

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

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

HI everyone, I am NED 3 yrs now. I was one of the newbies in 2009. There were so many amazing people that I met, as some of you mentioned there are a number from that group that have passed. It breaks my heart when I hear someones battle or a new Diagnosis. So for me, it is not that I am NED why I lurk more than write, but because I still feel like it takes up a huge part in my life and can go through really down times. I will lurk every now and then. I think about all of you all the time. Don't ever think that you are forgotten. Those who have fought and are fighting, those who have lost the battle and those NED, it still remains a battle just in a different way. This group helped me so much, I will forever be grateful.

jen2012
Posts: 1196
Joined: Aug 2012

My husband had stage 1 testicular cancer 13 yrs ago. Our oldest was a toddler and (a little miracle baby story) we had a couple of weeks to get pregnant before his surgery and radiation. To all of our surprises..including the docs...I did get pregnant. While he was sick from radiation, I was sick from pregnancy! He went through surgery and couple of months of radiation..then his appts with urologist and chest scans and never really gave it any thought again. He did offer to talk to the newly diagnosed patients of my friend who is a urologist but no one ever called. That was kind of before we were really online much. We just wanted to get on with life. Fast forward 9 yrs later and surprise we can still get pregnant even after surgery radiation and the fact we are in our 40s and had tried for yrs! Crazy huh?! I guess my point is I can get why people move on. Unfortunately a yr after the baby we received this crappy stage 4 diagnosis.

I very much appreciate those who stick around with their stories but I can understand why some don't.

when my husband was first diagnosed last yr, I sat for many hrs in waiting rooms while he had tests and scans...just searching for hope. I kept coming across posts from this beautiful vibrant young mom of 4....Donna. when I read that she had died I felt like I was punched in the stomach. I remember sitting in the hspital crying for someone I never knew...it was heartbreaking jus thinking of how unfair life is.

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

Life is only partially Fair and only in its tiny details. You give kindness, most of the time you'll receive kindness back. 

But overall complete fairness is just the illusion of the human mind hoping that everything is gonna be all right. And most of the time it is. However sometimes life gives us hardship for reasons we can't explain, so we shouldn't ask why. Life is life. We have to play with the cards we were handed.

How are you and your family holding on?

Laz

 

jen2012
Posts: 1196
Joined: Aug 2012

Nope...life really is unfair ....murderer, rapists, child abusers that will live a full life and then others that are living a good clean life and die too young. A lady at our church is in her 60s and has lost both of her sons...one was murdered and the other was ill. That's not fair and I know that there isn't a magic wand to wave to make things fair but it does shake my faith. Our family is hanging in there...some days are harder than others. We had our daughters 16th bday party today...the family party. Ugh! Gotta love family...at least that's what I hear. I had to duck into the house for awhile after listening to my husbands brother...older by 9 yrs .. talk about where they want to retire. It just make me feel sick when I listen to others make plans without a care in the world. I know I shouldn't be that way but its hard. How has your daughter been?

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

...got much closer together. She spent more time with me this summer and it made a difference. Besides constantly showing love to her I gently keep expressing that at this point I can't afford to deal with a bunch of whining and minuscule drama of hers or others. So it's great. Should have done this long ago, maybe I wouldn't be here if I didn't swallow all the stress that she and her mother gave me.

I know it's hard to hear and watch other people living normal lives. But we have to remind ourselves constantly that we are still the same person we used to be before our illness, not less and certainly not less than others . We have our qualities, skills, knowledge, experience, everyday life, we just happen to have cancer. Many perfectly healthy people woke up this morning like on any other day and then died or got injured in a car accident, at work or by violence. It can happen to us too. But sofar it didn't. Praise The Lord!

So let's make dreams and plans like your brother in law, because if we don't, we will never achieve them.

Take care till next time,

Laz

Trubrit's picture
Trubrit
Posts: 1430
Joined: Jan 2013

So let's make dreams and plans like your brother in law, because if we don't, we will never achieve them.

Thank you, lp.  These are words to LIVE by.  

annalexandria's picture
annalexandria
Posts: 2213
Joined: Oct 2011

NED for 21 months and hopefully will continue that way, at least for a while (scan this month, knock on wood, WHY DID I EVEN BRING THIS UP).

Anyhoo...I plan to stick around, although I do occasionally take a break for a few weeks, because it does take a certain amount of energy to be engaged in a forum like this.

As for how people interact here, well..everyone has different needs (we all have needs, no one of us is just a "giver", or just a "taker", imo).  And those needs can be different at different stages of the process.  There have been times when I'm here asking questions, and times when I'm here trying to provide information and emotional support.  I have to say the first year and a half after diagnosis, when I was getting my butt kicked by chemo, and doing a surgery every six months, I wasn't here doing a whole lot of giving.  In fact, I don't think I even joined until 2010, a full year after dx.  So I really admire all of you who post here while doing tx.

I guess what I'm trying to say is that however people choose to interact here, as long as they are respectful to others in their approach, then it's all good.  There's no one right way to do it, and no need to apply labels*, because we're all people, not categories.  We contain multitudes, as Walt Whitman would say.

Lots o' love~AA

 

*But if I must have a label, I would prefer "smokin' hot".**

**Just kidding.  "Alive" is probably my favorite label.

 

 

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I believe I am heading in the right direction. I dont sit back and wait for a recurrance. I am now inn grad school and working towards my Nirse practitioner. I think everyone has their own individual resons why they stop coming here or lurk or stay really involved in this forum. Nobody can understand what another person feels, but we can try to imagine.   I may not be here much and lurk mostly, but I still promote awareness.   God BLess

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I believe I am heading in the right direction. I dont sit back and wait for a recurrance. I am now inn grad school and working towards my Nirse practitioner. I think everyone has their own individual resons why they stop coming here or lurk or stay really involved in this forum. Nobody can understand what another person feels, but we can try to imagine.   I may not be here much and lurk mostly, but I still promote awareness.   God BLess

annalexandria's picture
annalexandria
Posts: 2213
Joined: Oct 2011

and realized that I didn't join until 2011.

So I am really pathetic.

darlad
Posts: 17
Joined: Nov 2010

I have always been more of a lurker. I was diagnosed with Stage II colon cancer in 2010 with high risk for reoccurrence. I had chemo for 12 times and working while going through treatment.  I would log on more to read and get a better understanding of what to expect, how to discuss issues with my doctor. Also the comments helped me with what the best foods to eat and how to better take care of myself. I worked my job through chemo taking off only the day for infusion. I had lost a lot of hair, had bouts of pancreatitis, headaches, and absolutely no energy. Ovary cysts and found it all took an overall toll on me.

Once the Chemo was completed I found thoughts of what was I to do next? All the sudden I wasn't going to the doctor as much but I really didn't feel much different. The board gave me comfort of reading stories of everyone's battle. My battle seemed small and it put it in perspective for me.

I continued to have a hard time with memory and not being able to concentrate. Seems hard to complete tasks that I had use to take for granted. Couldn't get to sleep and stay asleep. The Doctor seemed to feel that it was due to ageing. I am currently 49 (which I still consider young). I read the site at first to see if I could find others that experienced the same problems and then found myself worried about particular members and wanted to log back on to check on them.

I do feel the cloud is lifting and that mental challenges are not as difficult. I don't feel the same as before chemo but I do find that my confidence in my decisions gets better all the time.

One of the reasons I don't post often is that I am not sure that I have enough knowledge and understanding to provide a proper response. My battles seem so small in comparison to the majority of the heartfelt situations/comments on the board. I also lurk on this board as I fear that if I am not paying attention that I might miss a sign that it is coming back. I don't trust the CEA as it wasn't high when this started. I feel as if I wait for a bad CEA level, it may be too late.

I see the board being full of incredible support and understanding. No better way to walk through a diagnosis with a large volume of knowledgeable understanding friends. You are all an inspiration to me and appreciated!

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

...an inspiration to us as well. I believe that participation and engagement is invaluable here. If more people join together it can lead to wonderful effects and results on an individual's life and the common good.

For example the achievements of the current technology and medications are undoubtedly due to the dedication, perseverance, intelligence and hard work of tens of thousands of professionals and patients. The power of the human mind took us this far and will take us much further if we all try a little harder and stay engaged. 

So I thank you fir your contribution by taking some suffering for all of us and just by letting us and your doctors know your experiences you made a big diffrrence.

Laz

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

Both "smokin' hot" and "alive".  AA, a pleasure to read your posts as always.  Sorry, for some reason, my post didn't appear below AA's as it should.   

annalexandria's picture
annalexandria
Posts: 2213
Joined: Oct 2011

I'll happily share both of those labels with you, girl.

tanstaafl's picture
tanstaafl
Posts: 961
Joined: Oct 2010

I miss Jennie (Idlehunters), buzzard (Clift) and Lisa42 a lot.  Lisa had a lot of posts about adding gimecitabine (Gemzar) experimentally to buy time, insurance hassles and overcoming chemo side effects.

One of the great resisters who looked for high techie angles and extra chances was Snominntj, John T Nimmons III.  An independent thinker and character, John's many adventures were his odyssey to wring out answers and extra time (2-3 years) when he always was being given "1-2 months". He provided insight into pitfalls and practicalities for patients, as well as "roads less traveled".     Vintage John on playing for time  A, looking for new drugs, CarisDX-Sparc-Abraxane (little things), supplements, or looking for another way to zap tumors, or the accidental gardener.

He spent a year getting radio therapy, (hopes, hobbies) was delayed, finally yielding the Guatemala trip series:  A, BCD, E 

Many stories reinforce the need to carefully mind cumulative cash outlay, cumulative side effects and tumor burden from the very start. We've emphasized aggressive surgery and oral supplements and immune boosters with lite oral chemo.

tanstaafl

PatchAdams
Posts: 272
Joined: Nov 2011

I was NED for 3 years and now have been NED again for 18 months.  I have a PET in mid Oct.  If that scan is clear,  I'm coming up on 5 years  since dx! 

I tend to come and read about once a week especially if someone has been ill and I'm concerned.  I come when I'm facing a scan, too.  Just dropped by today for no real reason.

Kimby and Lisa42 touched me the most.  Both were awesome women and I talked with them, listened to their heartaches and then their families kept in contact for a year or so.  

 

janderson1964's picture
janderson1964
Posts: 1577
Joined: Oct 2011

Sorry I didn't respond to this post sooner. I have been just laying low with the posting. I think I am going through a mid life or maybe mid cancer crisis. Most of you know I am extremely active with mountain biking and kayaking. I have added sport atving to my activities and that has gotton addicted to powersports so now I am in the process of getting my motorcycle license and buying a sport bike (Crotch rocket). I am determined to ride a motorcycle to the hospital for my next MRI at the end of October. So I hope to have my license and bike within the next week. I have also become one of those crazy people who are doing the ketogenic diet. At first I though it was crazy but I have been researching it for over a year and feel it is worh a try.

Anyway I got a little off subject. I still consider myself NED and I feel it is my duty/privilage to stay here to offer any help/advise that I can to others. After 8 years of fighting I hope I have some wothwile experience to share. I certainly understand people that leave here when they are NED. It is tempting sometimes. All of the bad news can be really hard to handle at times.

All of the people that we have lost here hurt me but I would have to say Jennie (Idlehunters) hurt the most.

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

Even though I also realize and understand why people would want to leave this experience behind them, as I explained in a follow up post without you guys this board and the cancer world would be a very dark, hopeless place. So I myself greatly appreciate the dues you paid and keep paying as your conribution to this board.

what bike are you gonna get?

Laz

jen2012
Posts: 1196
Joined: Aug 2012

Jeff...stay safe on that bike! Would hate for something to happen to you after fighting so hard with cancer. My husband wants a Harley...ugh!

You definitely bring a lot to the table here and like Laz I'm very grateful you stick around.

Helmet right?

janderson1964's picture
janderson1964
Posts: 1577
Joined: Oct 2011

Thanks Jen. Helmet, Boots, jacket, gloves. I am taking no unessasary risks.

Happyhar
Posts: 49
Joined: Apr 2010

Maybe a more plesant word than taker is "receiver". Most of usl have received more Than we ever could give from all the amazing folks on here. I'm kinda embarassed that I left some time ago because I felt I had little to "give". I came back just today because I needed information. Selfish I guess when now I realize my doing well for several years could have provided hope and encouragement for others. Amazing how quick one can clear his conscience. Well, I'm back and INTEND to hang around more. Love to all.

janderson1964's picture
janderson1964
Posts: 1577
Joined: Oct 2011

Dont feel selfish. We all have to deal with cancer in our own way. I think we all have to put our survival first. And that is not selfish because we all have friends and family who love us and don't want to loose us.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network