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Long timers leaving and no comments- NO Fault


karen335

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Kati,

I'm not implying that, just curious why so many are not on the boards like they used to be.They are truly missed. I guess they are doing their own thing. This is a support group family and we care. That's all...

God Bless, prayers and Happy New Year

Karen

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Karen,

Hi. First, how are you feeling? I have not seen an update on you recently :)

Second, I will share my opinion on why you don't see some people that you used to. Again, this is just my opinion--I think it has to do with the emotional aspect of the disease. I think that people all come here for different reasons, some for support; some for friendship; some for information, etc.

I think whether someone posts as often or not as often just has to do with where they are in life and treatment. Some people with NED find it hard to be here at times and want to esacpe (like my mom, I don't think she would be able to mentally "handle" all the news here as well as she would like to) ; other people with NED enjoy posting and want to encourage hope to others.

On the flip side, some people undergoing treatment may or may not want to always post depending on how they are feeling, etc. And those who lost a loved one may find it too hard to post. Others find it soothing. I personally am in touch with some people who I love dearly and who don't post as often as they used to just because of where they are in life.

Hopefully that makes sense :) ANd again, I am speculating, but that's my opinion :)

Be well

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Wow, Andrea! You hit the head right on the nail, or something like that...

I don't post as often as I used to - normally. I am at a very high point of stress in my own life and it keeps getting deeper. I have to support my real-life family first and foremost, so all that gets brought to the board is leftovers, so to speak.

I read often, but find myself at a loss for words quite a bit. Odd for me, I know...LOL

But I'm here...just sitting back and being a wallflower most of the time, but I chime in when I feel the need. Go figure!

Take care,

Becky

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Andrea,

Thanks!! You answered my question very well. Miss your posts too... I am doing well. I have to make an appt. with my onc. and also City of Hope for an MRI for the radiation onc... When one is feeling half way decent, we try and live as normal as we can, I understand. Hoping we all have a better New Year and waiting on news of the Cure in 2005...

Blessings and prayers,

Karen

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Karen,

Posting for me comes in waves. For some unknown reason, I just have times when I just don't feel like posting, and then all of a sudden someone will write something that I just have to respond to, and I'm off and running again.

I think a lot of people go through phases where they just don't feel like they have anything to give, so they stop posting. Of course, I wish they would still post, just because we always wonder about them and wonder how they are doing.

Mostly, I just wanted to hop on here and tell you that I will pray that you will be reporting soon that you are empty-headed! :lol:

Lots of love and hugs,

Peggy

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Hey Andrea,

I agree with your comments.

I think that people all come here for different reasons, some for support; some for friendship; some for information, etc.
I would like to further that with, when folks come for their particular need it sometimes clashes with a needs of another. Its that way in real life too but in real life we get that sense and don’t necessarily associate with others that don’t share our personal ways. Here its more difficult to sense and our comments become offensive as opposed to real life when our comments are tempered with syntax, gestures and such or not. When posting its very time consuming to lay out subtleties and we think that some things are a given.and quickly learn that we don’t really know the others or necessarily want to depending on our needs.

Dr Joe’s need was to pass information as that is what he does.

For me this board is information for my fight I get my support in other areas. And when I disagree with another’s opinion it takes away from my need and digresses the thread. And I will say that at this point I am not going to involve myself as much in threads because it is too stressful. I will comment and answer but not discuss. That being said we all have a need and this is the best place to have it met. I hope it doesn’t crumble like so many good things do when they become large. Further more, biting tongue,,,

Bo

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IMO, there's something else at play in this forum and probably others like it.

Having been online for many years now, I've posted in lots of different kinds of message boards. Mostly, I think people go for the ones that hold their interest -- there are boards for hobbies, politics, religion, and all kinds of things. But, they go by choice, based on their interests, education, background, etc.

Here, we've all been thrust into a group that NONE of us wanted to be in. Ever. We choose to be here, and we share common interests, but it isn't a fun, "let's share crocheted TP cover patterns" type of place. This is a place where people come who are often devastated to know they or a loved one has an awful disease. They come for support and information and for whatever - just like Bo and others have pointed out.

But, cancer does not discriminate. It hits us all, and we, the fortunate ones, find such a place as this forum. Many of you, including myself, say this to new people -- that we're sorry they have to be here, yet glad they are.

As with everything, nothing lasts forever. Even the little funsy boards have a big turnover in participants. People move on. They may feel better or move away or just be so busy living they don't have time to be here any more. But what's so very different in this kind of forum is that we actually lose more people than the normal boards do -- and those people die. And we grieve along with their families. Then someone else comes along, because this disease continues to run wild. And on and on it goes.

We're here because we want/need to be. We chose to be here. We would all choose NOT to have to be here if we could. But we can't. And we aren't here because we all like to crochet or build model airplanes or whatever.

We come from all walks of life, many different places on the map, and with different backgrounds and values.

No wonder we have disagreements now and then.

Di

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Hi all and a very happy new year to everyone. I don't post often, but I pretty much check in every day to read whats going on. I usually will check the general and lc in news and any posts about new help for all of us. I'm kind of sad to see so much controversy going on once again on the board, but it is really important for us to stick around for others. Usually I don't feel as if I have anything to add to the posts because everyone here does such a good job, but I am around if I'm ever really needed. God Bless everyone of us this year and I hope and pray that this is the year for a cure or at the very least better and easier medicine to help us and those who come after us to survive this crappy disease.

Love, Nancy O.

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Hi All,

What I meant by people not posting. This site is for support AND treatment news. This site and the information on here has helped me make some serious decisions for treatment. That is another reason we needed Dr. Joe and the others to help us make these decisions. That is the main reason I was asking. We are not all offered the same treatments. That's another reason to share information. Otherwise we might never know about other treatments, trials and etc. associated with this disease. Only what is offered in our area. We do have a LOT of states and countries involved here. It may save a life...

That's why I was asking and also the fact that I do care about others, especially when they haven't posted in awhile. I don't do games well. Very forth right and don't want to hurt ANYONE'S feelings.

Thank you

Blessings and prayers,

Happy New Year,

Karen

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ok, for me, you all helped me throught mom and dads LC and sometimes I feel like my turn has passed and I should not hog attention that others actively going through hell need.

My sister is still battling her cancer but hers is breast and maybe that doesn't belong on a Lung cancer board.

added to that. I am so so so very busy with finializing mom and dads estate, arguing with people who wanted something from the estate and got nothing. buying mom and dads house so i can stay close to them and remodeling it so i can live in it without going nuts.

and...my best friends daughter is still in a coma and i am doing double duty at work without her here. I am literally an overwhelmed person at the curent moment.

I still check in daily and ache for those going through it still and now.

I feel helpless most times that someone else is suffering on the same road I did twice and somehow there needs to be a cure.

also now that my meds are right I am coming out of the depression and anxiety attacks so i try to do things that won't trigger them again

i still love everyone and wish the best, i am just a little distracted at the moment.

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I too have not posted in a long time...though I still read often. I don't post as often, because I have focused my energy now on dealing with my grief...when I feel healthy again then I will post more, because I would have more to offer.

Second, I have never felt more vulnerable in my life then after losing my beloved mother. I notice that some posts here are quick to "attack" others when feelings are hurt or words are misconstrued. I know emotions run high, but the last thing I would need is someone attacking me when they dislike something I said. I don't need to focus my energy on soothing someone else when I am in the gutter.

It saddens me, because it seems to be more of a common place now then when I joined almost 2 years ago.

This site sustained me at the worst point in my life and I know it does that for others. It was invaluable and I have met so many loving people. I will be forever grateful for this site.

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I didn't mean to offend anyone. I have compassion for those of you that have lost a loved one or are really busy. . I only posted this thread, because I miss all of you and so do many people here on the board. You hold a special place in my heart. I enjoyed reading your posts. If you feel you can't correspond at this time. I truly understand. You are so right, it does seem more of a common place now than it was last year when I joined too. There is something not right. It's sort of an empty feeling. It's hard to explain. Rick & Katie, Thank you for all that you do for this board... Please everyone, don't misconstrue what we are saying. Does this make sense?

God Bless and prayers

Wishing all a Happy New Year,

Karen

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I am sorry to say due to some of the last 4 days on the board, there are several members that have stated they are leaving. I am writing this with great dissappointment and concern.

I hope in the future that disagreements , heated debates and arguments can be handled via the PM tool or via Email. It is understandable that there will be debates and debates are healthy but malicious posts or posts directly pointing someone out and letting them have it are not what we are here for or at least I hope this is true.

The disease here is horrible enough and we should be looking to others for support and guidance and not lashing out at specific posts that you disagree with.

I want everyone to know that we have never asked anyone to leave and want to keep it that way. The removal of posts that have taken place has been warranted and deemed neccessary. Each forum has moderators with the capability to delete posts that fall into the areas stated in the user agreements when everyone registered.

AGREEMENT STATEMENT WHEN REGISTERING

While the administrators and moderators of this forum will attempt to remove or edit any generally objectionable material as quickly as possible, it is impossible to review every message. Therefore you acknowledge that all posts made to these forums express the views and opinions of the author and not the administrators, moderators or webmaster (except for posts by these people) and hence will not be held liable.

You agree not to post any abusive, obscene, vulgar, slanderous, hateful, threatening, sexually-oriented or any other material that may violate any applicable laws. Doing so may lead to you being immediately and permanently banned (and your service provider being informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator and moderators of this forum have the right to remove, edit, move or close any topic at any time should they see fit. As a user you agree to any information you have entered above being stored in a database. While this information will not be disclosed to any third party without your consent the webmaster, administrator and moderators cannot be held responsible for any hacking attempt that may lead to the data being compromised.

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By clicking Register below you agree to be bound by these conditions.

The above is the agreement that has to be agreed to before the system will even let you register.

Please lets keep this site clean, friendly and helpful for all. That was why this site was started and will continue to be just this without exceptions.

Please remember we are here for you and not the enemy. We want the best place for support on the web.

    We dont delete posts to maliciously attack any one person.

Please, I am asking for everyones support and compliance in order to provide a great place to gain support.

Rickey Brown (Rick)

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Karen, Your post makes perfect sense. In my opinion, everything is cool everywhere, and everything is going to be ok.

Rick, Thanks. If everyone keeps up with good, wholesome support posts and people will open up with cries for help and information, people will come back in droves and new ones will join and get the hope they are looking for.

I was 7 mos. living with the bad news on the internet before I found this website, and you all have energized my spirit and hope.

Love to all,

Peggy

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Hi Karen!! I haven't posted as much either...so I'll post right now to say "hello". I find it hard to contribute at this time for many reasons but please know that I am quietly saying prayers for all of you and care about you. An update on me...I've been trying to allocate my time assisting with finding a cure for this disease. I've volunteered with a lung cancer research fundraising organization and they've named me the Sacramento Regional Event Manager. We are doing a golf tournament and silent auction in September. I'm also terribly worried about my Dad and find that a lot of my time is spent giving him all my support. When I feel more balanced emotionally and get to a point where I think I've been able to handle my grief, I will definitely offer my words of support. I hope you all understand as I don't mean to be selfish.

I'm amazed at the great things you LCSC board members have done with the website. The addition of the Ask the Experts form is terrific! I'm going to get on my soap box here. Karen, I hope you don't mind me using your thread for this, it just make it easier than posting a new thread or responding to the thread dealing with the issue of anger with one another. This isn't directed at anyone...I just want to put my two cents here in relation to all the controvertial threads I've seen on here through the 19 months I've been here. I just want Dr. Joe to know that I'm saddened that he feels he needs to leave this website. I greatly admire his service to us here. I'm in awe of his dedication and compassion. I could never be a doctor and deal with his issues on a daily basis and then come here and dedicate what I have left. It took me four doctors to finally find one for my mom that had an ounce of the compassion that Dr. Joe has displayed to all of us here. Thank you, Dr. Joe, for your service. I wish you the best. I thank those of you who contribute your education and experience on this board. I understand the emotions to this disease ...it can definitely take every ounce of your being and turn it inside out. I know that I've felt despair, anger, sadness, then upbeat, hope, then sad again, bitter, etc. I just hope that when people post out of emotions, they remember that some valued sponsers, doctors, nurses, organizations can read those things and decide to not contribute to our great need for awareness. I've never been to a local support group where people have had arguments or judged people to their faces and I find it interesting that it happens on line...it's easier when we can't look at each other. Along with offering support, the beneficial thing about this website is it shows how many people are affected by lung cancer...it puts a face with the disease which in return makes people more aware of how much research needs to go into this disease. I don't want to turn those people away that can help bring awareness, fundraising dollars to this disease. This website is such a tool for lung cancer and bringing awareness to it. Katie, Rick and many others have dedicated so much time to this website. I think we all have a responsibility to administrators of this website to respect that and respect each other whether we agree or disagree.

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Well said, Natalie.

Karen, I too have not posted much for a long time. I do read and keep up with the people on the board who have become so familiar to me. But I find that right now, I don't have the emotional energy to read the newcomer posts and answer with encouragement and hope for them. I feel a little guilty about that because so many people helped me and gave me moral support when I came to the board and was desperate for information.

At this point in time, I need to focus more on the "new normal" of my life and less on cancer.

I send positive thoughts and prayers everyday for every person on this board, and in the future perhaps I'll have more to say.

I too regret the loss of Dr. Joe on the board. I was in awe when I saw that a doctor would give so much of his time and be so open in answering all questions, tough or not. Most doctors are so cautious that they barely give info to their own patients, let alone people who aren't even paying them for it. I wish you well, Dr. Joe.

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I have been much quieter than I was initially.

When I thought I was sharing, turns out I was scaring people with details.

Made me feel less free to comment, because Lord knows this beast is scary enough with out me telling horror stories.

I do run in spurts, depending on how busy I am, and how much mental energy I can devote to picking people's spirits up.

And somehow, those who are here when you join, you feel you know a little better than those who come after.

At least for me, unable to attend chats.

I do try to stay up on events, and pray for best outcomes, and give back since to date I have been spared.

I just want to remember we are all blessed to have each other as family.

Good and bad.

Those of us who are astute politicians move through with words of support and comfort without injecting too much of their own drama.

I was never much of a politician.

I have some thoughts about critical mass, or numbers, as I saw essentially this kind of thing happen on quitnet. Then I saw how completely anonymous boards interacted, and was astonished at the outright barbarian behavior. So maybe my theory is all wet.

At any rate, I'm here, horror stories and all, trying to tame my tongue, but I will let you know how much you all mean to me. You are my family by way of this horrible cursed disease, and I love you all and keep you in my prayers.

xoxoxoxox

Prayers always,

MaryAnn

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MaryAnn -- if you "tame your tongue," or can't be honest, what kid of support site will this become? What if we all started doing that, and didn't post about reality for fear of scaring someone?

I agree that tact is a real plus in this kind of forum, but holding back in that manner doesn't really serve the purpose of what someone going through this needs, does it? To me, that would just mean going to visit a professional in real life so I could speak freely.

The last thing I'd want would be for this kind of forum to become nothing but touchy-feely. If someone feels awful, has received the run around from his/her health care team, feels like taking a dive off the Empire State Building or whatever, seems like they should feel free to be here and to just say that. Tomorrow, things may be different, but to hold back? Naw. Ripoff!

MaryAnn, you've been a source of inspiration, and I enjoy reading what you write as well as many others around here. If I ever got the feeling you weren't telling things exactly how they are, I'd be extremely disappointed.

I was hesitant myself to write about PCI, as sweet Alice was having such a difficult time of it, but I did it anyway, because it was reality. I've written about my ordeal with inept health care "professionals," and the hoops I've had to jump through that I shouldn't have. ALL reality. ALL something that may help new people here.

Please don't take this the wrong way, but the worst case scenario to me would be to see this forum lose real people who are battling cancer or who are caring for their loved ones over losing "experts." If those people leave, then this forum doesn't have the purpose I initially thought it did, and that would be incredibly sad to me. We can find "experts" all over the internet -- web sites are posted here almost weekly, and a lot of them have places where you can ask questions and/or research to find answers. Not a one of them is going to tell you much that is concrete, because they can't without seeing you in person.

I know that those "experts" serve a great purpose too, and that doesn't go unappreciated by me. But ... I'd rather lose all of them than even one person battling cancer who might leave this forum, or even one person who felt they could no longer be open and honest about what they post.

Di

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Sorry Di I have to disagree with some of what you said ---

I do think people here want honesty, and I think people can always vent their feelings here---however, when the venting becomes personal and downright nasty---to me that is not honesty, but just downright rude-

You can certainly disagree with someone here---I do not think that anyone would say otherwise (See I am disagreeing with you :lol: )

I do think that since we are bigger, we are bound to have all sorts of people here---mellow people, type A people, very opinionated people, angry people, etc. --and sometimes all these personalities will clash--

However, I would not go up to someone and insult them in person for the sake of honesty , (even though sometimes I would like to), so I do not think we should do so on the board either---to me that is just manners---

Believe me, I have written many angry responses when I saw something I did not agree with, and then just erased them because there was nothing constructive about my response---it was not going to change that persons mind--so what was the point other than my anger?

best wishes,

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Eileen -- we don't disagree at all. I just didn't 'splain it as well as you did!

For sure there is a line between posting about someone personally in anger, and expressing anger over physical problems.

I was just trying to point out that there are many other sides to this. Unfortunately, I left out what you pointed out which is so very obvious. :oops:

Di (who has "mea culpa" set up in a macro on her PC)

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