Please Think

[ernrol]

Bill,

I agree with a lot of your comments. I have been on several sites and this one is the best for information and support. There is always going to be a problem with the concerns you have expressed. I think that posting in the wrong forum has something to do with it. The posting of some caregivers may be posted in the wrong forum and may inadvertently be insensitive. Even some survivors make posts that are discouraging at times. Some care has gone in to the development of this site by creating different forums. I stay out of the FAMILY MEMBERS/CAREGIVERS forum, as well of some others because I don’t want to read any negative post. I think if we all did what the subject of your original post states it would improve the situation, “PLEASE THINK”. When we post we should ask ourselves will this be discouraging to a survivor fighting cancer or a caregiver? Is this the right forum to post it? Unfortunately this probably would not keep the post you mentioned that was a reprinted article. I just look at those as dumb remarks as being based on the past. I was told that I had 16 to 18 months. This is my 18 month and I am going to try to run a half marathon, why? Partly because the statement ticked me off. I will cross that finish line even if it takes all day and I have to crawl. Bill you have plenty to offer this site and there are probably more that feel the way you do. Leaving off the signature would not help, because every time I saw no signature, I would think that person did not make it.

Caregivers have a different problem than one that is fighting cancer. They need their support too. As a person fighting cancer like you I need every positive thought I can get. I guess that I am a little selfish in that I think my problem is more important than that of a caregiver. The matter of living or not is just paramount to me.

So our goal should be to have certain forums that are best for caregivers and some that are best for anyone fighting cancer. The forums already exist; we just have to use them better. I think one of the reasons we have some caregivers whose care receiver is not on this site is because they are afraid they will read something negative.

I have not checked the past post to see what happened to certain types of cancer patients as you have, because I don’t want to come up with a negative conclusion. I have thought about this and I have decided that some of the people that have a long survival feel that they are not in need of support so you don’t see them here. The long time survivors that are here is because they have a desire to help others. Many others have just gone on with their lives and are not heard from.

A partial solution may be to post some specific guidelines and have the moderators try to make sure they are followed. People should read the Forum menu before posting. Note the following menu items.

INTRODUCE YOURSELF

Please introduce yourselves here & then move on to the many other forums!!!

That means to me that you introduce yourself, then others will post welcome post, then move on to another site.

This is not being done and the introduction becomes a back and forth forum.

MY STORY

Click here to read the inspirational and personal stories of lung cancer survivors. This is an "About Me" forum, you may reply to these stories directly by PM or e-mail or openly on the message board in another forum. Feel free to add your own story here!

I interpret this to mean I can find a story here that will be inspirational, one that lifts you up and gives you hope, not one that tells me of all your bad experiences and how bad you feel. One should ask when posting here, Will this be inspiring to everyone that reads it? If not then it does not belong here.

LUNG CANCER SUVIVORS

A forum for anyone diagnosed with Lung Cancer, those in treatment and those who are not, to express their thoughts and issues from a patient's perspective.

That means just what it says.

This is just a few. When a survivor post and has some concern with the results of a new drug, he does not want to hear from someone telling him how horrible the side effects were to them or their loved one. He is looking for hope and there is always something good to say from someone. If you or your loved one has a horrible experience about some treatment then this should be a new post, not a reply to one that is looking for hope.

I have probably said too much already, but I believe that we can work together to make this site to continue to be the best place for support for cancer patients and caregivers alike.

Bill I would just change your subject from “PLEASE THINK” to “PLEASE THINK POSITIVE”.

Stay positive,

Ernie

[bware21]

Ernie,

Couldn't have said it better myself and obviously I didn't.

I think the reality is that the site administrators have done the best they can with the structure and organization of the site. I don't think there's anything better that can be done from their standpoint. From the community's standpoint, I don't think there's much that can be done there either. None of us are perfect and we'll all end up posting something somewhere that someone else will find disturbing. I think I've seen the light on this, and I hope sincerely that everyone ignores my idiotic suggestion about the timelines.

Although I do think it's been a "healthy" discussion, maybe this entire thread should be deleted? Just a thought.

Hey, by the way -- I hear that you'll be taking people on airplane rides. Good for you and great for them. No pressure ... but win that damn marathon!!!

Bill

[Maryanne]

Hi Bill,

I must have been in limbo here as I completely missed this post. It just took me over an hour to read all the responses.

What could say but WOW! So many opinions here and I am so thankful that everything is on an even keel and there does not seem to be any animosity which happens from time to time on here.

I am glad Bill that you cleared up some of the confusion that was going around in some people's minds about your first post. I could see how confusing that must have been.

Here is my 2 cents... When my husband was first diagnosed it was gut wrenching and I was so torn as I felt my world was turned upside down. I had no one to talk to who was experiencing what I was feeling. Then I found this site. It completely changed my thinking and has given me so much support to know that I was not alone. Other people were going through what I was and damn it helped. It brought me out of my funk and gave me hope that this is not the end of the world. I learned so much here about this disease and what to do to help.

So I became a big supporter here and though there were so many times I could not sleep from a friend on here who passed after so much hope. I was so upset that this person who seemed so full of life was gone. The hurt and void was tremendous. And this has happened time and time again. But at least I know that maybe I have impacted them in some way that may have made them smile. So many who have passed had such a strong positive presence on here that they are missed tremendously, but at least I got to know them, laughed with them and cried with them. They were all so brave and fought this beast to the end and I feel we helped them through all this turmoil by being here 24/7. We never turn our backs on anyone. We give support and knowledge and some of that has paid off.

I don't know if you know Kasey from here. She is such a tremendous supporter here who has a way with words. I wish I could express myself like she does.

If you read her story, it is amazing. She was told her LC was incurable and could not be operated on. She was told she did not have much time left. She went for 3 opinions and they told her the same thing. She found this site and a couple of people on here had knowledge of the same kind of LC and PMed her and turned her on to a doctor in Maryland who could help her. She went to him for a 4th opinion he said he could help her. He operated on her and now 2 years later she is NED. In fact she just had a CT scan last week and she is still NED. It is a miracle and it is all because of this site.

We are not G-d, only he knows our time but I feel good to help what I can to give back for the support and prayers I received here. Pay it back!

We do not live in a glass house. LC is a killer, but there always is hope, and that is what we get here. It certainly feels good when I read the good news forum that a person had their CT Scan and there was shrinkage or they are NED... And the unfortunate ones who do not have good news, well we are always here to help lift them up.

Yes,there are too many tragedies on here but there are so many inspirational stories along with their fight, as they never gave up. They may have lost the war but not the battle.

I know Bill, that "it is what it is", but attitude, hope and faith has moved many a mountain.

I wish you nothing but good results. I really love your postings as they are full of let's say all different reactions.

By the way being on steroids is not the time to read the profiles.

Nice meeting you Teri, I am another one who had no clue you were Bill's wife.

One more thought I want to add. From this site alone we have raised over $200,000.00 last year from our walks to LUNGevity for LC research. We are making such a difference!! And Andrea who put together our cook book with her own finances and gives all the procedes to LC...along with so many others who are giving proceeds from their craft's towards finding a cure.

This site, bless you Katie and Rick, is a lifeline for so many.

Maryanne

[bware21]

Every time someone replies to my original post in this thread I get that sick feeling because I know the darn post has just been kicked up to the top of the list again. Ah well.

I do still think the discussion was a healthy one, albeit some paid a hefty emotional price ... but even that I think is not necessarily a bad thing. Like I said elsewhere, a little bit of hurt can be good for the soul -- it brings it alive.

Bottom line: it's a tough road to hoe and none of us needs to be going it alone. How sad would that be?

Bill

[ErinC1973]

"Like I said elsewhere, a little bit of hurt can be good for the soul -- it brings it alive."

Well, not so much. I don't really think I need someone from this site to remind me of how much I hurt from losing my mom by stating that timelines (obituaries) should be removed from posts.

My mom fought just as hard as anyone on this site, alive or dead, and it really upsets me to think that because she is gone now, her fight doesn't matter. I spent the other night in a heap on my bed, sobbing uncontrollably from this, and I hadn't even read the original post. I fell off of another LC support board back in 1999 when my father passed away because I felt as though I had nothing to contribute any longer. This site is divided into sub-sections, and these days, if I post at all, it is mainly on the "grieving" board. Since 2003, I have made may friends on here who are continuing the fight, and I often "check up" on them on other boards. After this, I felt like I had no business sneaking around on other boards and I need to be slapped back on to "Grieving" where I belong.

And, that is where I am retreating now...