Please Think

[Sheri]

I don't mean to exasperate this situation but I believe I was the culprit of Bill's anomosity.

Last summer, in response to a good news post by a long time limited stage SCLC survivor, another member posted that early stage lung cancer survivors posting long time survival doesn't really "offer any hope". I found this extremely erroneous and disheartening as SCLC limited or extensive stage does have a poor prognosis.

I quoted an article from a valid source the grim outlook of any stage SCLC and how hearing from a long-term limited stage survivor is very encouraging to us affected by SCLC. My father (the cancer survivor) agreed with my viewpoint, and wasn't offended at all. My point, I wanted to encourage the orginal poster, that her post does bring "hope". She was even apologetic for her post. This was ridiculous and I wanted to point out what anyone who has done research on SCLC already knows.

Sorry if it was discouraging for you Bill. But as we say, "it is what it is" and I hope you are able to look past the average prognosis and continue your fight. My Dad has already beaten the numbers and I hope you do too.

[Nick C]

Bill,

I just wanted to let you know I got some thought's on my including a time line, because I truly do want to help as many as possible, and another member noted I can click off the signature button for some posts and not others. So now that I know, I will think about whether the thread needs to know mom's timeline. This one does not, so I have clicked off the signature option (if I did this right).

I have also decided in the introduction section I will not, as maybe some newcomers aren't needing that info right there and then, but if they follow one day in another thread about experiences...I will attach, as I think it is important to some.

So I'll say thanks for bringing a new awareness to this poster.

[Linda661]

Bill:

Thank you for your openness and honesty about what has been troubling you. I cherish input like that, truly. I'm just not sure how any of us could really shield each other from ever running across the dismal bits that are around everywhere on this journey together. Most of us probably already read them before we ever got here (I did) and were relieved to find a place of support, knowledge, and experience that is willing to say "HECK NO" to such things.

All we can do is stand united and know to ignore those things -- that's not what we're about...we're about helping each other and surviving (patients AND caregivers who support those efforts). And, as a caregiver who did suffer loss in this journey, I still come here to support others as I can.

Say we each did edit "the negative" from our posts....then what do we do when we have to provide links to articles we can't edit because the info. is just too darn long to copy to a post? An author may have an article with 90% really good relevent information and the other 10% may be full of things we prefer not to read. I wondered this very thing with my own mom .... do I not show her such things that could affect a treatment choice she needed to make in case she becomes sad at the one or two points the author made that are a downer?

Anyway, I'm so sorry for your pain and thank you again for your willingness to open up. Probably all of us have felt the same way emotionally of what you've described, not so much from what is or isn't on the board....just because it's a challenging journey to be on that asks us to be strong when we just don't think we have it in us to do it -- we can, united.

Take care,

Linda

P.S. How did you do that Nick? I didn't know we could do that!

[Littlegirl]

Bill - thanks for filling in the details of the issues that were bothering you. I am from the other side of the fence as I am a caregiver not a cancer patient, but I have gained valuable insight and understanding from discussions coming from both sides of the fence. I think many people here have. I understand where you are coming from. You can't cater to everyone when you are addressing both groups, but I think the benefits of having experiences from both sides far exceed what is lost. (Coming from a caregiver I understand that may be naive of me to feel that way.)

I've learned so much from this website and the VERY FIRST thing I learned was 'do not pay attention to statistics'. We all know the media has a way of distorting the truth. I know you were discouraged from researching past members as well. I do not have the details of what you have learned, but do keep in mind that this is a forum where people come looking for help. I recently developed my own health issues and when researching different forums became VERY alarmed about what might be in store for me. Since then I have come to realize that there may be MANY people who have the same issue I've had that recovered quickly and completely and hence did not find the need to seek out a discussion forum.

As far as removing the timeline from signatures I believe that is removing part of the story. I think it also helps to explain the point of view of the poster. (Again this is a caregiver point of view, but I believe we would have people on both sides of the fence having differing views as well.)

Bill, your fighting spirit makes me feel like you will be one of the long term survivors of SCLC. I look forward to reading your articles years from now as you thumb your nose to those statistics and negative sources. Good Luck in your fight against this beast!

Karen

[sharyn]

Dear Bill,

Well I have to say, when I originally read your first post, I was abit annoyed at you. I was thinking "okay, here is a guy trying to stir the proverbial pot" and we don't need any of that, thank you! I am truly glad I continued reading and found your post stating your point of view on our timelines. You know what? I never really gave it much thought before, but, I can honestly say what you said makes sense to me. I guess it would be incredibly disheartening to read through these timelines with the final line being.... My Dad/Mom/Husband etc. lost their fight.... Now, don't get me wrong.... I, like Nick C. intend to keep my Dad's timeline on some of the posts where I feel it may be of use, but, I think for now...I will monitor more closely when that timeline needs to be posted.

I also would like to add here that my opinion is JUST THAT only my opinion..... I, in no way mean any disrespect to Katie or Rick or anyone else on these boards. It is a personal preference and I think Katie would surely have no opposition to people deciding when or if their timelines should be included. Now, as a final thought, we all have so much going on in our lives, lets not make this truly small issue into some HUGE dissagreement amongst ourselves. What a shame that would be. Much Love to you all... Sharon

[Lisa O]

Bill,

I am a caregiver and a survivor as both my mother and I have nsclc. I understand what you are saying and feel terrible that anyone here would feel the need to treat you with disrespect. I thought your post was framed respectfully and most of the responses were also respectful. We all need to treat eachother with respect... we are not the enemy... cancer is. If you have a request, people should allow you to vent it. If they disregard it, you can choose to ignore the posts. I did not feel you slammed anyone and I would hope that no one here would be mean to anyone else. In one way or another we are all in this together.

Please try to remember that we are people and not statistics. If someone posts some disheartening news they may be looking for reassurance. I am sure and would hope that no one would post sad news for the purpose of bringing others down. If us survivors are not up for the job, perhaps someone else can step up to the plate. I hope so. That is what makes this community great.

[teresag]

I have been here for nearly four years, and in that time I've gotten to know many people. Many times, the person I've met has been the caregiver, not the person with lung cancer. Thank heaven there is a place for both to talk and share!

As someone who occasionally gives advice and support, I personally find it useful to read the signature section of others whom I know do not know well. (Which is mostly everyone these days.) I leave my signature up so other members know 1) why I care about lung cancer and 2) why I consider myself qualified to respond to some of their research and health-related questions.

It is clear that reading old posts can be sad. I do not go back to them for that reason. There have been too many sweet people lost in the time I've frequented this place.

Providing support for those affected by this disease demands that we all know our limits. One of mine is re-reading posts from our beautiful lost friends. Respecting your own limits is respecting yourself. And we all deserve that, just as we deserve respect from others.

Be well, beautiful friends.

[bware21]

All,

I hadn't intended to keep the fire burning by responding to anything, but enough people had important points of view and I'm compelled not to ignore them.

Although I do stand behind everything I've said that doesn't make me right -- it just means it's my opinion. I had this out with my wife last night, who is pretty much in line with everyone else ... which means I'm probably wrong. And that's okay, but sometimes you've just gotta say what's on your mind. We're all grown-ups here -- and what could make anyone more grown-up than dealing with cancer? I can't think of anything.

If I made any error it's that I didn't clarify where I was coming from in my original post, which rather left people wondering what the hell I was talking about. I did that intentionally, not because I wanted to be vague but because I didn't want to draw attention to the post that bugged me or to my stupid exercise of going through historical posts -- for the benefit of newcomers to the site who are still finding their way.

Also, I notice that PatKid's response to me was deleted. That's a shame because it was her post that really got me thinking and made me realize just how hurtful I can be -- in fact, how hurtful anyone can be when they're in a particular frame of mind. If possible, I'd like to see that post restored as it's a glaring example of how much sorrow this disease brings to a family.

I do think what I had to say was valid, but on reflection I also think my suggestion about the timelines was a big mistake. And I say that to acknowledge how important those timelines are to the healing process. When that dumb idea popped in my mind I was thinking only of new people coming to the site and how best to paint nothing but a positive picture for them. That in itself was a ridiculous notion, because at the end of the day you can't protect everyone from everything. So, although I stand by what I said I also know that my reasoning was flawed.

This is no excuse, but when I was undergoing chemotherapy today the nurse asked me if I was overly hungry or overly hyper last night. Yes, I said -- by why are you asking? Oh, because I gave you a dose of steroids yesterday. That's not to say I couldn't think straight, but it explains to me why I couldn't think long enough and allow my frustration to peter out.

Regarding statistics -- the statistics I found were of my own making. Articles have never bothered me (unless they include unhelpful comments) and I've always ignored the statistics. But the statistics I ferreted out by going through the history on this site really upset me -- bear in mind that when you do that you are also looking into people's lives (I was reading the posts too) and the sorrow kinda sticks after a while.

This is a great Web site. I said it weeks ago and I say it again. For me to expect perfection is unreasonable. And even if it was perfect for me it sure as hell wouldn't be perfect for everyone. The common theme throughout everyone's response has been the "community" and the value as a whole, not the individual. The more I write this paragraph the more upsetting it is because I obviously lost sight of that.

I'm sorry for any hurt I've caused and for the opening of wounds. But you know, sometimes a little hurt is also a little helpful to the soul. Thanks for your input and for setting my mind straight.

I should have listened to my wife before I posted.

Bill

[mary colleen]

Bill, as a general rule of thumb, men should just always listen to their wives:)

Anyway - though I personally like statistics as a point of reference, I don't think you are bound to become an unhappy statistic. I somehow think that you are far more likely to become part of the statistics of success that others look to down the road for encouragement.

Try to remain encouraged.

MC

[karenl]

Bill, thank you for your well-thought out posts, and for not getting offended and retaliatory when others opinions differed from your own. Your attitude helped to keep this thread in check when it could easily have become inflamed.

I think that everyone here can identify with where you are coming from - we have all been horrified and dismayed by the dismal prognoses associated with both SCLC and NSCLC. It would be nice if we could do our research and share information without being confronted with the alarming statistics. Unfortunately, this disease is what it is. When Mum was diagnosed with stage IV NSCLC, we were devastated (and both my parents being doctors meant that they were only too aware of the implications of that diagnosis). We took the approach that, while we had no choice but to accept the diagnosis, we certainly didn't have to accept the prognosis....and we never did. Mum lived twice as long as her doctors predicted, and we never gave up searching for that magic bullet.

With regard to the 'timelines' - I can certainly relate to your feelings about them. I know how thoroughly depressing it was, and still is, to see the numbers of people who aren't surviving this disease. But all it really takes is ONE person to be a long term survivor to give hope to everyone else who is diagnosed. And we have long term survivors of every type of lung cancer on this web-site!!

Love Karen

[j's girl]

First and foremost continued success with treatment

Bill, your posts always make me think. They sometimes even keep me up at night rolling things around in my brain. This thread is no exception.

I'd like to share my perspective with you as someone who lost her Mom to this disease. (Just scroll down if you don't want to read it). I feel like I fought right along side of my Mom. I did everything I could to lighten her burden so she could put her energy into getting well. Being an active contibutor to this message board makes all the efforts of Mom's cancer battle meaningful for me. If our experience can help someone who is in the midst of this fight, then something good can come of it.

I think one reason you see so many family members who have lost a loved one is because battling lc lights such a strong fire in people that we feel the need to honor our loved ones by continuing the fight. We're definitely not a random sample .

We are so fortunate to have this community. I've been searching for something similar relating to colon cancer (for my Dad) but can't find anything comparible.

Oh ya, if I ever post anything that bothers you, feel free to send me a PM.

I won't be offended.

Shauna

[stand4hope]

Hey Bill, you know what I was just thinking? When my husband was diagnosed, he had quite advanced NCSLC, including 8 brain mets. In the onc's view and my internet searches, he was a goner in less than 6 months. I searched and searched and searched for ANYTHING that gave him hope and I truly found ASBOLUTELY NOTHING good for about 9 months UNTIL....UNTIL....I found this site. Here is the only place I found any hope. That's why I took the name stand4hope.

My precious Don, too, was a "Don't tell me anything bad person", but he was a smart man and he knew it was bad. BUT, he basically told them they could take that prognosis and put it where the sun doesn't shine! Well, he kicked cancer's a** for two years, worked for 20 months, full time, 50 hrs. a week for those two years, took a motorcycle trip from Indiana down through the Smokey's after more than a year of treatment, multiple brain radiations, lung radiation, bone radiations and 6 different chemo cocktails. What a guy, huh? He didn't listen to, and refused to listen to, statistics, too.

I truly believe that a combination of good health and a good fighting attitude has the best prognosis for success. I don't think those two things are all-controlling (some do), but I do know for an absolute fact that the ones that are despondent and focused on the statistics and failure are the ones most likely to lose the battle a lot earlier.

I still think, though, that it is good to glance at the bad and prepare for it - just in case. My husband didn't do this and it caused him, and myself and family problems and regrets that could have been avoided if he would have at least said, "But, just in case, let me say this . . . ., let me show you how to . . . ., here's where the _____ is, hey son, you're a good kid, I love you no matter what you've done or haven't done......" None of these words were ever spoken because he refused to accept anything but the fact that he was going to beat it and that was final. His death took him and all of us, even everyone here, quite by surprise. You see, the cancer didn't kill him - one of his treatments did and quite suddenly.

Anyway, we truly don't see much statistic posting on this web site, but occasionally it does slip through either intentionally or because it's part of an article. If you look at many, many of the responses to newcomers, you will see the seasoned (oldies but goodies as Pat says) members also telling the newcomers to put those statistics where the sun doesn't shine! I LOVE IT!

You go, guy! It sounds like you are already on the road to beating this thing, and everytime one more person makes it, it gives everyone else hope, hope, hope!

Love,

Peggy

[dtay]

Good to have another post from you Bill. Bless you Dawn

[Jyoung20]

Bill,

Thank you for your words!!As I have said before, you are awesome!!!

GOD BLESS!!

Jmaie

[trish2418]

I know you're not using it as an excuse, but those darned steroids! They really did a number on me, too. I became a screaming banshee the day after chemo; the anger and aggression I felt was absolutely frightening to me. One day I screamed at my husband for 15 minutes because he left crumbs on the floor! Crazy! I learned to knock myself out with Benadryl the day after chemo because I didn't want to feel that awful rage or to say or do something I'd be sorry for later. My family and friends knew to stay out of my way the day after chemo.

I'm so glad your treatment is going well. I look forward to your wit and wisdom for many years to come.

Oh, and next time ... just listen to Teri!

Trish

[ztweb]

Glad to see everyone coming together. Raising two young kids it makes me think of sibling rivalry and bickering! hahah! We really are a family aren't we!

God bless!

Jen

[teriw]

Hi everyone,

As Bill’s wife, I’ve waited to weigh in on this topic. We don’t typically respond to each other’s posts, but this one is different.

As he said, we discussed this subject at length over several days. This has been one of our more difficult weeks emotionally. (It didn’t help when our doc seemingly took a mental hiatus on Monday, but that’s another story…)

As many of you know full well, helplessly watching the person you love more than anyone in the world struggling to find their hope and strength again is absolutely heartbreaking. I think it’s fair to say that maintaining that strength is nothing less than critical for those engaged in this horrific physical and emotional battle.

I was very pleased that Bill posted – once he opened up to you all and finally got to the point! Because I think what he had to say was valid, thought-provoking, and honest. Like most of you, I see the pros and cons of the specifics, like timelines. It’s hard enough getting a large group of people to agree on something trivial, let alone something so deeply personal as this.

Mostly what I want to say is a sincere “thank you” for the support and understanding that was expressed in both public and private correspondence, regardless of people’s opinions. It just confirmed my belief in this diverse yet united group of individuals.

We’re a virtual community here. When you read posts, you can’t see the tears in someone’s eyes, or hear the anxious, weary, or sorrowful tone in their voice, or giggle along when one tries to lighten a heavy situation. But they’re all there and we must never forget that.

[teresag]

Thank you for both of your responses, Teri and Bill.

Some people would have escalated into angry and hateful posts in this situation, Bill, but you didn't. You explained your perspective. Thank you for that.

Ditto for Teri. You both show great control under pressure, even under the "prednisone pressure!"

You are both valuable here - and I think others would agree that we would like to hear from you more often, Teri.

[ztweb]

This just shows how out of the loop I am...I didn't even know you were husband and wife! Stay strong you two! We are here more than you know, through prayer, positive thoughts, and cyber support!

Jen

[nyka69]

I am new to this site and have to say that I am very discouraged after reading these threads. I thought this was a place I could come to find valuable information (good, bad, and ugly) and then make up my own mind. I also thought this was a place that I could openly discuss my feelings as a caregiver (again, good, bad, and ugly). But I'm beginning to think that I may have been wrong. I hate to think that my post is being rated by another member. I think we all should be able to post freely. When you read another's post - if it doesn't apply, let it fly.

[Cheryl Ferguson]

Bill, I'm just glad to see someone actually say what's on their mind. Only a handful of those afflicted with this disease have responded to this post. It seems to be more of a caregiver concern. Keep up the progress!

Cheryl

[bware21]

nyka69,

Like you said, let it fly.

I'm glad to see that your husband is getting treatment. The treatment can work for him. The very nature of SCLC makes it respond very well to chemotherapy. And regardless of whatever I might say when I'm in a mood, what the doctors might say when they're having a good day/bad day, and what you yourself might think ... YOUR HUSBAND CAN BEAT THIS and you can get your lives back on track. Don't ever lose sight of that for more than a fleeting moment. It's the toughest battle in the toughest war -- make yourself the victor.

Bill

[melindasue37]

Bill and Teri,

When I first joined here I remember posting a very controversial post about The Gift of Cancer. I didn't post it to offend anyone or to start an uproar but it did just that.

I was so hurt when some members attacked me and comforted by all those that pm'd me to just let me know they had understood that it wasn't to upset others.

There really is two sides to every story and I can honestly say that when I posted it I was looking at it from a completely different perspective.

I wanted to let you know that I think we are lucky to have BOTH of you as part of our group!

Warm Hugs,

Melinda

[bware21]

Melinda,

I have to go to a meeting so this will be a little rushed, but thank you for your understanding -- and thanks to everyone here who has understood what's been happening these past few days. I know I've upset people and I'm sorry for that, but we can't always be treading on eggshells. Someone's always going to get hurt occasionally, but if there's one thing that's been driven home to me these past fews days it's how very important this community is. Any hurt we might accidentally inflict is a small price to pay -- and that statement right there probably hurt someone (joke).

Men are just plain stupid sometimes -- what can I say?

Bill

[Kathleen1]

Nyka69, please don't be discouraged. This site IS all you thought it was. You can openly discuss your feelings as caregiver, and you can find valuable information. You can lean on us!

I agree, if it doesn't apply, let'r fly!