Do NED patients tend to leave the forum?

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

 

I don't agree with labeling people like that.  It really is not that simple.

I see that you haven't been around here long, so you may not be up on history over the years in this forum.  Not everyone that doesn't participate much here is a taker, rather than a giver...  some have been around a long time and have found that they are able to do more good in other venues.  Some have found they can get better support without so much fighting in other venues.  Some of those "takers" you refer to get what they need without needing to post.  They search and find what they are looking for.  But they may be afraid to post due to some attitudes on this board in the past, and fear of being attacked.  You just can't compartmentalize support systems like that.  Some come back and lurk a bit, but don't post much because they've been involved in too much drama at different points in the past on this board, and just don't want to deal with it - but they still might check in on old friends.

There are many who were very valuable to me and to others several years ago that don't come around much, and I fully understand their choice.  It does not mean they aren't VERY giving.  And it is not my place to judge someone who isn't comfortable posting and/or sharing their story.  They shouldn't be chastised for coming here for information without outwardly participating.

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.

annalexandria said:

Well, I'm still here,

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.

 

 

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 said:

Just looked at my avatar,

and realized that I didn't join until 2011.

So I am really pathetic.

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!

ron50 said:

G'day Laz
I have a favourite saying" surviving survival is not easy ". I have always described myself as an accidental tourist of cancer. Why have I survived.? For a start because I knew without any doubt that I would. Probably because I didn't care one way or another if I did or not. Next Jan will be the end of year sixteen. Sometimes I think I have suffered worse than some who passed quickly. That is not self pity it is simply that I would have much rather have an epitaph that read "he died after a short illness than he died after xx years of continuous poor health " .
I have tried all the regimes suggested for healthy after cancer life. For a two year period I was walking around fifty miles a week every week. Tried juicing ,to quote a movie "yeah you can live on it, but it tastes like crap". I don't drink or smoke. I am close to having my virginity re-instated thanks to the effects of cancer, surgery and chemo. I don't take anti-depressants. My system is a wreck. I can't feel either leg below the knees or my left hand. I had nerve conductivity tests . There was no signal in my left leg and minimal in my right. The neurologist told me he did not know what caused it and that he could not help me. My kidneys are an enigma. They work fine at producing urine and ridding my body of toxins. The trouble is they also rid me of up to 4 grams of protein a day. The protein keeps your blood in your veins . when you lose it you suffer oedema. I suffer peripheral and pulmonary oedema. It is not much fun waking in the middle of the night with dreadful nightmares because you cannot absorb enough oxygen. They tried lots of things to help my kidneys . By far the worst was 75mg a day or prednisone for 18 mos. It caused osteoporosis and type two diabetes. It did not help my protein loss . Another specialist tried three blood pressure drugs. My protein did not drop but I nearly did walking around with BP of 65 over 50. After the prednisone I suffered a flare of psoriatic arthritis. My rheumatologist tried me on several drugs. These guys have an arsenal that oncologists would kill for. The only drug that worked and even helped my kidneys was methotrexate, yep ,another chemo drug and potent immune-suppressant. Trouble was every time I tried it my neuropathy flared big time. No more meth said the neurologist. In amongst all of the above I suffered a bout of acute pancreatitis and subsequently lost my gall bladder. During the whole of the 15 + years social security deemed that I was not ill so I have continued to work . At one stage I developed bi-lateral frozen shoulders. No not sick enough for disability, keep working. On the lifestyle side of things , my wife got tired of me being sick all the time so now I live alone and have for several years. Recently I started to have some unusual turns . I would start sweating profusely and feel quite ill. I would have to sit and rest till it passed. I was put in for some heart stress tests. They showed that my heart had developed premature ventricular ectopic beats. No one seemed to worry . Apparently every one can live quite happily with a few hundred ectopic beats a day. They fitted me with a 24 hr holter monitor. I recorded over ten thousand ectopic beats in 24 hrs plus a couple of sessions of tachycardia. I have an appointment to see a cardiac specialist in a few weeks. Because I have been diagnosed with an auto immune disease of unknown type I would never be considered for any sort of transplant. Because of my kidneys the only pain killers I can take are pannadol. I take diurectics every day so that I don't drown from the inside. I have to take stuff called questran lite every day . Since my gall was removed I suffer bile salt mal absorbtion and chronic diahorrea . The questran binds the bile acids and takes them thru.
Like I said Laz surviving survival is not easy. I haven't posted this to scare or upset anyone ,it's just the way it is . Surviving cancer is about more than just beating the disease,,,,Ron.

You have really been through heaps since you were first diagnosed.  I am now heading for my 20th anniversary of stage 4 and my hemicolectomy and wedge resection of liver. We both had the same chemo, and I would hope no one ever has to go through this now. I also have many health problems, but I am Cancer free.Hope things can improve for you.

Love Virginia.

Kathryn_in_MN said:

There are reasons

I don't agree with labeling people like that.  It really is not that simple.

I see that you haven't been around here long, so you may not be up on history over the years in this forum.  Not everyone that doesn't participate much here is a taker, rather than a giver...  some have been around a long time and have found that they are able to do more good in other venues.  Some have found they can get better support without so much fighting in other venues.  Some of those "takers" you refer to get what they need without needing to post.  They search and find what they are looking for.  But they may be afraid to post due to some attitudes on this board in the past, and fear of being attacked.  You just can't compartmentalize support systems like that.  Some come back and lurk a bit, but don't post much because they've been involved in too much drama at different points in the past on this board, and just don't want to deal with it - but they still might check in on old friends.

There are many who were very valuable to me and to others several years ago that don't come around much, and I fully understand their choice.  It does not mean they aren't VERY giving.  And it is not my place to judge someone who isn't comfortable posting and/or sharing their story.  They shouldn't be chastised for coming here for information without outwardly participating.

for your input very well said,i have alot of respect for you with all you have been thru,miss you posting but i know you stay very busy(((hugs)))...Godbless...johnnybegood

YoVita said:

I'll take your labels - AA

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.   

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

ron50 said:

G'day Virginnia
It always makes my day to see your post. I wish we didn't have the levamisole but you have to wonder if it is one of the reasons we are still around. What amazes me is that with nearly 36 years combined survival between the pair of us nobody has bothered to ask me why I'm still alive,,,Don't know about you. You would think they would be interested in long term survival. Still I get the feeling that most of the medical profession don't want to talk to us or about us.... Big hugs,,,,Ron.

I think you may have hit the nail on the head about our servival Ron.  I have too have wondered about the dreaded Levamisole, and I have not heard about anyone being prescribed it  since our days. Apart from cattle.  Big hugs to you too Ron.

Love Virginia.

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, B, C, D, 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