Do NED patients tend to leave the forum?

lp1964 said:

Dear Marjan,

I myself enjoy every little input, little personal events, trips etc. people did or doing. Imagine if all we talked about was cancer. Then this forum would be a very dark place.

I think if a fighter or a survival has anything to say here is an inspiration to most, because it makes us feel normal. Some people say " I have nothing to say, because other people said it before". Well that's ok. But look at how many good wishes people get when they go on a trip during a chemo break. Or express their desire and hope to see their nephew's graduation. 

It doesn't have to be all cancer. We all love Craig not because he only writes about his struggle, we love him because he tells us a lot of things about his life, aspirations, plans even when he is in very bad shape. Or Joe, who is so vibrant even when he is down. And there are countless people here who will never miss an opportunity to send well wishes to others before scans or tests. Congratulate for good news and comfort after bad news. 

All I'm saying that the more people participate the better and I would love and encourage healed patients to revisit and show us hope, because as I'm finding out, you can be 20 years NED cancer will still never leave your mind.

Laz

I miss a lot if the oldies. I try and post as much as I can.  Help where I can.  Some leave because they didn't like the BS that they git. must say in 2009 and 2010 we had a great group here. It's good now but back then we all helped each other, Buzz would throw the rope to all the newbies.   Pulling them up from their newly diagnosis and depression.   Sad that depression got ahold of him. 

2bhealed and Scouty.  naturalist.  Miss them lots.  Hope all is well with them. 

Plus the others already mentioned. Donna left way to soon. Lisa, who I got a chance to meet, too sad. Eric, we all loved Eric. Michelle used to post for her hubby.  Cheryl, she helped many with her knowledge. Many more that left us After thus time, that I didn't get to know that well. 

We have many lurkers. 

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.

for sure not all stage IV NEDs leave. I would never consider leaving...not because I think I can do "so much good" here but because I cling to the forum...in the times of my deepest darkness I turned here and there was always someone here.  Most of those people have gone....only a very very few left...That in itself is frightening....after so many years why am I still here????? who knows....not me.  So so so many gone before...sending special hug for J be Good....tonight...and Pepe and Phil and Craig and Diz and and and.....back from the northern woods.....mags

maglets said:

Laz

for sure not all stage IV NEDs leave. I would never consider leaving...not because I think I can do "so much good" here but because I cling to the forum...in the times of my deepest darkness I turned here and there was always someone here.  Most of those people have gone....only a very very few left...That in itself is frightening....after so many years why am I still here????? who knows....not me.  So so so many gone before...sending special hug for J be Good....tonight...and Pepe and Phil and Craig and Diz and and and.....back from the northern woods.....mags

 

As a related anecdote, I tried to start a support group at my church, as we had quite a few people over the years get cancer (mostly women with breast cancer.)  I didn't really know everyone's stages and when they had it, or if anyone even had it now, but I knew that it was pretty common. So I started approaching folks with my idea, and most had completed their treatment and had left it behind.  As if if they never wanted to deal with it ever again (who does) and they probably burnt their wigs as a closure ritual!  Na na na na, way hey hey, good bye! That sort of attitude.  Most of these people werent stage IVs, I might add. 

When you first posted this topic, I immediately thought of those people at church who were not interested in reliving their cancer trauma.  Period. So maybe some people on our board who do become really NED (IIs and IIIs) are the same... And they just do not want to look back.  Dunno.

I did meet a stage IV ovarian cancer person at church - we bonded over Xeloda. She has a really unusual form of it but is alive and doing well. 

I think if i was ever NED (hah! in my wildest dreams) I would want to move on competely and wouldn't come back here. I'd be tempted, like googling a past relationship, but I would really try to move forward and not. Cancer takes up a pretty big space in my life now, and if I were healed, I would want to fill that space with other things.  But, I'm not NED so can't really say. Sometimes I obscessively check this board more than five times a day - if I'm feeling really anxious I feel connected when I see your posts. Isn't that weird??? 

anyway. I'm glad for the people who do overshare (=)  about their symptoms, treatments, etc because I do think it helps people, us, and lurkers. Are the sharers givers or just extroverts??  I don't know who I'd classify as a taker - definitely the people trying to sell water and supplements ;-)  But some people come here for a short time in a panic (usually caregivers) and want advice or want to vent, and then they are gone.  But somebody usually takes the time to interact with them and give advice.  And that's really kind.

At the end of the day, People get what they need out of this board.   it all works out and that's what matters.

anyway cheers all

Karin

Chelsea71 said:

Hi Laz,
My husband, Steve,

Hi Laz,

My husband, Steve, passed away three weeks ago after a long, difficult, action-packed battle with MCRC.  To me he epitomized a true giver.  His attitude was a lot like joemetzger.  Very positive and out-going despite all the discouragement and suffering he had to endure.  He was a true individual who loved life and was eager to give his time and energy to anyone who needed it.  He set a good example for others facing a new cancer diagnosis.  Through his actions he demonstrated that it's possible to live a full and productive life while battling cancer.  He maintained this positive attitude right up until the last day of his life.  On that last day, he made a little speech to all the doctors and nurses who had gathered in his room.  He had made the decision to disconnect the medication and monitors that were keeping him alive.  Everyone was very sad as they congratulated him on putting up such a good fight.  He explained to the group that these past years of living with cancer had not been that hard on him as he had been very busy living his life and going to appointments, treatments and tests.  He said it had all been much harder on his wife and family who were on the sidelines feeling worried and helpless.  He knew that his life would be ending shortly but he realized that other people were sad and he was trying to make us feel better.  He just had such a giving nature.  I miss him so much....

 

It upsets me a great deal that he is gone.  Like so many others that have come through CSN, the world was a better place with him in it.  Such a waste.  I don't understand it.  He should not have died, but he did.  Now it's my job to honor his life by taking this unnecessary tragedy and creating as many positive occurrences as possible.  Craig would call this repurposing.  I have learned a lot in two and a half years and I feel it's my duty to remain part of CSN in hopes of being able to help others through my experiences.  At times I think it would be in my best interests to just never log on again.  It's so heartbreaking to learn about people's set backs.  But I feel it's my duty to pay it forward.  Plus there are just so many people here that I care about. Eventually I plan to find additional ways to give back in Steve's honor.  Some type of volunteer work etc.. Maybe driving people to chemo.

 

What about you, Laz?  I suspect your going to make a full recovery.  Once cancer is in your rearview mirror, do you plan to stay involved?  I hope that you do as you seem to be a great guy with lots to offer to the group.

 

Chelsea

Thanks Chels, I couldn't have explained why I'm still here any better than you just did.

Hugs dear,

Cyn

LivinginNH said:

 
Thanks Chels, I couldn't

 

Thanks Chels, I couldn't have explained why I'm still here any better than you just did.

Hugs dear,

Cyn

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.

KathiM said:

Hummm.....everyone ELSE get a response....

sigh....just not ME....sigh...I shall survive!!!

 

Kathi

I'll respond. 

I think you are incredibly strong. You have and are fighting battles of breast and rectum, and now you are NED. 

Now you get to impart your wisdom and strength to the battle your beau is going though. 

Blessings to you both. 

Trubrit said:

Strong

I'll respond. 

I think you are incredibly strong. You have and are fighting battles of breast and rectum, and now you are NED. 

Now you get to impart your wisdom and strength to the battle your beau is going though. 

Blessings to you both. 

*smile*.....I love you more than my luggage!!!  Thank you for your warm words!!!!

Hugs, Kathi

(BTW, he is doing FANTASTICALLY!!!!!!  Week 9, and no sign of rejection!!!!  WHEW! WHAT a different world the heart world is!!!  Very little organized support, and dismal paths for information....BUT, I'm a trooper....I'm sharing what I know as I find it with others that have gotten new hearts, and so new lives, around the time we got 'ours'.....*smile*....)

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'm not sure if "takers" is the best choice of words.

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.