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lilyjohn

statistics, emotions and attitude, good and bad

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I thought that we as a group had decided that we all could post what we thought was appropriate but if we had questions about it then we should label the posts with a warning and give the post a descriptive enough title so that people knew whether or not they wished to open the post.

Again, I am going to say that what I, for example, find upsetting, is not what someone else finds upsetting. I would be happy to give a list of upsetting posts, but I would not ever ask that someone not post something just because it might upset me. (I really won't give a list of upsetting posts because I don't want to make the person who posted feel bad about making me feel bad). maybe off board, I wouild....

So again, I am asking more specifically what is and what is not appropriate that my bestest friends Cat and Becky are saying amen to. NOT because I am being antagonistic, but because it is not clear. It could turn out that nothing except the most bland of questions and reports would be things that would NOT upset someone.

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I believe that everyone should be able to say what is on their mind. I think that every response here is quite valid. My original point is very simple. It is alright to have questions and seek answers. It is fine to vent your anger or frustration. I just don't think it is right or fair to constantly beat ourselves or anyone else over the head with the statistics or anything that can take hope away from them. We all know the statistics. None of us deep down in our hearts can deny the seriousness of this disease. We live with it everyday of our lives. It doesn't matter if you are the patient or the caregiver. It doesn't matter if you have lost someone you love to this monster. You live with it everyday.

Quote the statistics if you must but add the disclaimer to that. Give the reasons that those statistics can be wrong. Remind people that they are not up to date. That some of the people who didn't survive didn't die from their cancer. Remind people that it is not this percent that will not live but that percent that will. See the cup as half full instead of half empty. It is amazing what that one small difference can make :!:

This is a place to gain support and to get answers. It is also a place to vent, cry and get angry. Above all it is a place to give support. Every subject is valid but like Snowflake says some people are on very shaky ground already. Even tho there is an area to post those things everyone knows that most will read them even if they do say they are "sticky" it is just human nature to do so. I think I can give a good example of what I mean when I say that a person shouldn't be constantly beat over the head with what could happen to them.

Not long ago Faye told about the tumor that was removed from her eye. She also told about the doctor losing it and his answer when she got upset. He told her that it didn't matter if it was cancer! He was once again doing the same thing that I ran into time and time again while trying to get help for Johnny. He was in fact saying "Nothing really matters. What difference does it make if it is cancer. You already have lung cancer and you are going to die anyway". That is one of the cruelest things a person can do to another.

I don't think anyone wants to be lied to. I just don't think that it is right or humane to constantly be reminding someone of their condition in such a way that it robs them of that one small ray of hope they are clinging to. That one small ray of hope that gets them up in the morning and able to face another day with all of it's problems that will have to be dealt with. The reality is always there it doesn't go away when a person is asleep or awake. If you ask those in remission I'm sure they will tell you too that they know the reality. They live each day as it comes. They have learned to cope because they have that hope. Take it away and the body responds. A person who is constantly in an emotional or mental valley can not respond good to treatment. I know that only too well!

There are many subjects that can cause disagreement. Often I mention my views on medications and I have even voiced some doubts about Hospice. That is based on my own person experience. There are many things that I saw both while Johnny was sick and while I was working in that nursing home. I could tell them here but I never would. The reason is simple. People have to make a decision. Some of those decisions are so heart wrenching that it takes everything they have to make them. Once those decisons are made they don't need me or anyone saying anything that will make them question their choice. Once a person gets to the place where they can live with their disease without the fear or uncertaintly overpowering them they need positive thoughts to hold on to.

Statistics was not the main reason that I started this thread tho it seems now to be the focus. I started it because I was upset by a remark to one of our members. Like Snowflake said "Let's be nice to each other" God knows we get enough other things from the outside world.

Elaine be nice to yourself. Don't question your thoughts or beliefs. Everyone here knows what a kind and loving heart you have. It is so obvious in your responses and your concern for others. I think that is some way you may think that we are all ganging up on you. We are not! no one here is saying not to post your fears or your thoughts.

We are just saying that once in a while someone joins us and without thinking not only voices the demons we are keeping at bay but hammers at them constantly. That is just not healthy for anyone here and certainly not for the one who is doing it. I know this because that is exactly what I did when I joined.

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When I first found I had a "tumor," and before we knew exactly what it was, the Oncologist came by my hospital room and we discussed what it "probably" is -- NSCLC. (As it turned out, it was SCLC, but we were one day before getting biopsy results.) He talked about treatment being virtually the same either way, at least at first, and said I should start chemo the next day. He was going out of town (to a big meeting in New Orleans where some new information came from) so his associate would come by and handle that. He talked of a trial they had going that I would be "perfect for," and would have his associate bring all the paperwork for that if I was willing to participate. We talked about the trial, and he convinced me to go for it. (It wasn't too hard, because I was eager to jump into treatment.) A few minutes after he left my room, he came back by, stuck his head in the door, and informed me that the trial was closed, so "never mind." Huh??? He's the Associate Director of Research at this cancer center, and he didn't realize it was closed? Well, maybe he didn't know and maybe it was perfectly normal for him not to know, but should he have discussed it with a patient before he knew for sure? In one word - NO.

He kept harping on my adrenal glands too, even though the other docs and the clinical data pointed away from what he thought. He mentioned a needle biopsy that day in my hospital room, and promptly talked me out of it saying that it was "dangerous- could start bleeding," and that even if it came back negative, it probably wasn't negative, but the needle just wasn't in the right place. Huh? Of course, when I held his feet to the fire about this and had the other 2 docs discuss it with him, he brought up the biopsy again, and all of a sudden it was a good idea. Yeahright. Finally, the 2nd round of scans and tests proved the other docs right, but he still won't to this day admit he was wrong about that.

This doctor and this center are excellent -- he has knowledge, skills, and the right stuff to treat me for this cancer. But -- he has an ego that won't quit, is very young, and lacks a lot in bedside manner. I call him Dr. Gloom & Doom now, because if I had a hangnail, he'd be warning me that it "could be" cancer. Of course, everything "could be," but I leave the clinical stuff up to the other docs now, as I don't believe much of what he has to say. He's following the treatment protocols, and the Radiation Oncologists and others in the Cancer Center support my treatment, so I'll stay with him unless he gives me a reason not to that isn't about his personality.

Everything in moderation, my parents used to say. This must be true of the medical field as well, especially within a bunch of people fighting cancer, no? Moderate doses of gloom & doom, denial, negativity, or whatever, tempered by the maximum degree of hope that the person can muster. That's gotta be it, or at least close.

Dianne

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When my mom was learned she had lung cancer in August of 2002.

She had went to the doctor for on going neck pain and upset stomach.

That is how they found the cancer. By Sept. 02 the oncologist pretty

much told her there was no hope. He said she could try chemo may by

her a few extra months. My mom went into denial and would talk of

things she would be doing years later. I was glad she was so positive

and was going to try to fight this beast and try her best to win. My mom

comes from a large family of 11 brothers and sisters. Two of her sisters

did not think it was good her being in denial and bluntly said you are

dieing and to quit planning for the far future. I still to this day will not

speak to either of those two of my aunts { plus they did and said much

more. } After they told my mom this she stopped her chemo and was

very depressed and slept 18 hours of the day away. Finaly after my

brother who is a nurse talked to her and gave mom that ray of hope

back she did snap out of her depression. The entire time she would

complain about her neck pain and the doctors kept blowing her off like

what does it matter anyway you have lung cancer. They would just not

treat her pain and this was several doctors she kept telling. Finaly in

Dec. 02 while in the hospital my brother insisted they do something for

her neck pain. They found a tumor in her neck and said it would be a

waste of time to do radiation to go home and call hospice. I guess my

point is this all started with neck pain and mom died with the neck pain.

Because the doctors figured it was a waste of there time to treat her

because she was dieing anyway. Haylee

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Sometimes I can sit quietly and be silent on issues but I have to voice my opinion on this issue. When Dennis was diagnosed with cancer, he never asked "how long" or wanted to know and statistics. All he was interested in was fighting the cancer that had cruelly invaded much of his body. He was hopeful and optomistic right up to the very end. He always thought he would beat this "thing" and was always verbally expressing that attitude. I was so glad he was strong and was so proud of him. He helped me to be strong but told me constantly that I was his rock. On the other hand, I needed to know how much time we had and what to expect. I spoke with the oncologist and almost fell over...and would have if the wall had not caught me....when he told me 3-6 months if we are lucky. I so wanted that time line to be wrong. At night, while Dennis watched television, I was glued to the computer, searching for every possible statistic possible and hoping there would be one that would give more time. Unfortunately, all of the statistics were about the same for sclc. I was devasted ! Although "bubbly" on the outside, my heart lived the next 9 monthis waiting for the end to come....as the statistics has said. On the other hand, Dennis lived his life fighting and hoping until the end. I believe his attitude would have been much different had he known the numbers, as I did. As a long time member of this board, I believe my reason for being here is to help others that are now experiencing what I have already been through. I want to be a shoulder to lean on and always have an ear that is willing to hear a call for help. Although I know more about this monster that I ever wanted to know, I am still not an expert. I do not feel qualified to share medical information or statistics. I agree that statistics are important and there is a reason for them. I know there are some people who want to know but there are others that have no desire to have gloom and doom presented to them. There is a wealth of information available online and in libraries for people that want to know. I am sure their oncologists can state statistics to them all day long. I just believe we should be a support group and leave some decisions to individuals. What if someone fighting this disease, that had no desire to learn statistics, read a thread and found out what statistics say? I am one small voice from this group but I remain here to offer support and to listen. When I found Dennis had cancer, I was so lost and alone. I don't know how I would have made it without the support from this group. This is not a controversy and should not be viewed as one, in my opinion. It's just a chance for each of us to express our views!

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Ann, you make some good points. Thank you.

After thinking this over somewhat, I had to hold up 2 things to evaluate -- 1) Do I just write what I think, no matter what, thinking that this is a forum where you can just open up, say it like you think it, and let that be that? OR

2) Do I remain mindful that there are others here who may not feel the same way I do (specifically with statistics in mind), but what the heck, they should get over it and be open minded like I am (koff koff), etc.

I'm quite outspoken most of the time, but since this monster found me, many things have changed that I never would have thought possible before. This may be one of them, and I'm sure there are plenty of people in my life who are glad of it!

I think that I would come closer now to #2, because ...

I come here for support and try to give some back when I can, and I think the others here would probably say the same thing. You hit the nail on the head, I think, in telling about you wanting to know the numbers, while your husband did not. I wanted to know it all, and like you, I look for reading material and information. I've learned now though to take many things on the internet with a grain of salt, and I try to stick to the more reputable journals and health care providers.

As the days/weeks go by, I've been told a few times that I'm adding to those statistics - significantly. Like I said before, if it's even a 1% chance, I want to be in that 1%!!!

Thanks again for your thoughtful post.

Dianne

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Thanks, Ann...now I can post my feelings, too. 8)

When I was diagnosed, I really didn't do much research, the "C" word was scary enough to me. I think, in part, I didn't do the research because Mark played a BIG part in keeping me away from the computer...and for that, I thank him.

I was ignorant going in. My thoracic surgeon had guessed my stage at I or II, EARLY, he said... I had surgery. I hurt too bad to sit up and get on the computer, so I didn't. My first oncology appointment I learned I was IIIa. I couldn't breathe...but I didn't know why - just that "III" sounded worse than "I"... and when I shared the news on my Friends & Family email distribution, my aunt (a nurse) shot back a reply telling me that she was sitting "with tears in her eyes" praying for me...THEN I started to search...and it was a worse knee in the gut than the news of IIIa.

I read the statistics, I read them all....and I closed up and went into my shell. I wouldn't talk to my doctor about my feelings, Mark brought up the numbers in the offices...and from my "team" I got my Hope back. My GP assured me I had many things going for me, my oncologist suggested trials due to my age and told me that the statistics are old - and skewed. I found this board and I read posts by RY, JudyB, BeckyG, Ginny, Ada, Cathy and KatieB. I spent quite some time lurking before I joined, the Hope had started to grow...

I would HATE for someone in the shoes I was in to lurk on this site and have those d*mn statistics and negatives pounded into their thoughts. I took a LOT of positives from this site before my first post. I didn't take a lot away in medical issues, it was all in the emotional battle. The statistics don't need to be paraded here, this is a place to find Hope and to fortify the soul for battle.

...and I miss Judy, Becky and Ada.

Becky

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Thnaks Ann and Becky,

I'll tell my story:-- the very short version.

Unfortunately for me, I knew way too much before I was even DXed. Before I even went to the Dr, I think I knew what was up with me. I found this site before i was Dxed. I lurked then. It made it harder for me to go to the Dr.

Yes, I did see hope here, but I saw more than that. I saw stories, detailed stories about deaths and pain. This site scared me, maybe more than most other places that are more Medical in nature, because those sites deal with things in a more clinical way.

Sure I saw other stories, but I also saw that cancer is often stronger than hope and human will. When I finally talked to a medical professional, I got some of my questions answered as to what I was seeing here. I am not going to say what I was told because it might take away the hope of some, who look to others who are surviving longer than the stats. Part of that has to do with the very REAL fact that the stats ARE old. Plus, now that I don't trust my medical prosfessionals, maybe they fed me a line of baloney--but some of that baloney, I have been able to verify. I am a researcher, by nature and by schooling. Sometimes, ignorance, could be bliss. I mean that in a postive manner. There are things I wish I didn't know, and things I know that I don't really have the background to truly understand, and things I may have miskewed.

I guess my point is that all of us "see" things differently and "see" different things. Numbers have never been all that important to me, as I don't much understand them. Stories, and what is even worse sometimes, is parts of stories. For me it is the part of the story that I don't "see" or "hear' that scares me most, sometimes.

I hope this makes sense. I understand that statistics are gruesome for some and Becky and I Pmed yesterday about why stage IV statistics are in some way easier than Stage III numbers.

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Elaine....I can enjoyed reading your post and I can related to how all the news of deaths and the stories of dying must have unnerved and dismayed you. After Dennis's death, I felt really strange posting at times. I felt like the person reading the post would see that my dh had lost his battle and would be discouraged. I think several of us that had lost a loved one felt the same way. ShirleyB had this wonderful idea, which I passed onto Rick, about creating a topic area especially for "Those That Have Lost a Loved One." Rick almost immediately (thanks Rick) made that idea of Shirley's a reality. We then felt that we had a place to post and discuss our grief without diminishing the hopes of others. I guess the name of the are was pretty specific and people knew what they were about to read before going there. As a result, many of us were able to discuss our feelings of grief and loss more candidly without fearing our stories would be depressing for others. I realize there are many of you that differ from me regarding the posting of statistics on this board. Maybe a solution would be for Rick to add yet another area..."Statistics" ...where people could openly discuss this. If people don't want to know, they can stay away from that area. Rick is a very wonderful and cooperative person. If anyone feels they need more from this board, all they have to do is ask!

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Ann

I hope no one thinks that I think that people shouldnt post about the deaths of loved ones. I think people should post what they need to post. There are appropriate sections for posts and we can always put warnings on them. I am responsible for what I choose to read, an I can stop reading if I am in over my head.

I have learned a great deal from all of you.

love

elaine

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I have often heard it said that everyone who reads the Bible interprets it differently. I have often seen evidence of that. I wonder too if it is not the same when it comes to those statistics. Doesn't evenyone try to read them to fit their own situation. Don't we try to find what we need from them? Often we are disappointed but I would be willing to bet there are plenty who read the Bible that often feel defeated because it doen't say exactly what we want it to say.

The difference is that there is a turning point in the Bible when Christ died. Now when we read the New Testament we find hope where once we found only stories of the hell that waited for most everyone.

I'm waiting to see that turning point in cancer of all kinds. I'm waiting for someone or something to come along and remind us that no matter how dismal things may look the day will come when someone will come along and save us all just as Christ saved us from our sins. I say this not as a person who has been diagnosed with cancer but as someone who has lost much to it. I think this is one thing that everyone can agree with.

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Thank you everyone for such wise and insightful thoughts on this topic. I really appreciated what Lily wrote regarding not wanting to take away hope from people. I couldn't agree more with that.

I guess in my family we have been really lucky as although Mum is a Stage IV, and her inital lung specialist didn't seem to think fighting the disease was an option......well, my Mum and Dad thought differently.

I thought about this a lot last night and I realised that it wasn't really the statistics that are the problem, but the REACTION to the statistics. And I think when first faced with the statistics when you are dealing with a new diagnosis for yourself or in the family, it is really hard. For instance, the reaction of Mum's first doctor was that there was no point in fighting. This could certainly have taken away hope. My initial reaction was shock and despair. But now my reaction is a realisation that it is a serious disease but that it CAN be beaten. Mum is beating it every day. Other people are beating it every day, defying those statistics.

The statistics are what they are.....numbers. Sure, they represent something, but that's all they do. The rest of it is up to us.....to keep up the fight, to keep up the hope, to keep up the love and the support. Pesky numbers should have nothing to do with that.

with love to all

Jana

xxxx

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I've really enjoyed reading this thread. I can most identify with Ann's post about how Dennis didn't want to know anything, just get on with the cure, but she wanted to know everything. That describes us to a "T". My hubby doesn't want to know anything, just tell him what day, what time, and point him where he needs to get the treatment because "I've got work to do." That's it. He just wants to know the treatment options, he picks one, and that's the end of the discussion.

I will have to say that I don't like the idea at all of having a statistics forum. I'm afraid that could become a very depressing forum, and I would like to think that we are primarily about hope. I'd rather we let somebody else cover that topic in other places.

I also have to say that I've been here for 5 months and don't ever recall seeing a single post where statistics have been shoved at us continually, and I don't miss many posts. Perhaps that happened prior to my joining, but I just haven't seen it, or don't recall it.

Where we get into statistics the most is when new people first begin to post. Usually, at the time they begin to talk to us, all they know is statistics. Every single person who responds to them does an OUTSTANDING job of setting them straight about statistics. You did it for me and I have learned from all of you, and I, too, pass on optimism to these new people just like you taught me.

The only thing I would like to see changed is the use of the word "wrong". It does bother me when someone tells a new person the statistics are "wrong", because I'm not so sure that's true. I know what they mean when they say that, but I'm no so sure the new person does. I think the new person has two choices, (1) they can believe you and think the actual accuracy of the statistics are dead wrong, or (2) wonder who you think you are to say you know more than the statistics. Does that make sense? The statistics are outdated because of the group of people they apply to, and they also don't tell you how many people died from other causes, but I do think they are reasonably accurate for the time period to which they apply. I love it, though, when everyone tells the new person their personal short story and how they have beat the statistics, how long they have survived, and how many other people who are here that have beat the statistics, and that they (or their loved one) isn't a statistic. I think that gives them HOPE.

Love to all,

Peggy

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Peggy

I think you wrote everything that I couldn't phrase as eloquently as you. Agree with ALL OF IT. I also don't think a statistics forum is a good idea. There isn't much to say that we don't already know anyway. I agree that normally the stats are talked about when someone new joins and you are right in that they do get wonderful responses of people beating the odds, and helping to give them hope.

Ditto, Ditto everything you wrote.

Jana

xxxx

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A few thoughts on wanting to know...and not wanting to know:

When my mother was dx'd with colon cancer and had her surgery, the surgeon came out and told us...."Going by the averages (read: statistics) she's got 9 months". You could have knocked me off my chair with a puff of air...because I was deep in denial.

A month or so down the road, I had a good conversation with Mom's oncologist...and I related this to him: Mom had a phone call from her best friend in Seattle, not long after her post-op follow up. She asked my mom about the cancer and my mom replied, "Oh I don't have cancer anymore, Marge....they took that out during surgery. I just have these spots in my liver"!!

The oncologist had shown Mom a scan or xray of her liver showing tumors. She also had mets in the lymph system. But apparently when looking at the films and pointing out the tumors to my mom.....the doctor used the word "spots"....and Mom took that literally. Not cancer. Spots.

The onc later said to me...."She's not ready to absorb yet, what those spots are. She'll come to grips with it in her own time".

And she did. But it was long months down the road. Long months. In the meanwhile she kept saying, "I'm going to beat this thing". She tolerated her chemo well...never lost her hair and she lived 2 years and 3 months....three times those "statistical averages" the surgeon quoted to us!

When I came here....I'd already read the depressing stats you find on the net when you do a search for small cell lung cancer. Limited OR extensive....there ain't much hope in those stats. But it became my habit...both on the web and even reading thru the posts here....that if I came across something that was just too depressing (or too statistical :wink: ) I simply STOPPED READING!

There are days when it's very hard for me to be here. There are certain threads I just cannot read thru. I feel badly when I cannot be more supportive....but some days it's all I can do to keep myself up and running. Reading depressing stats isn't gonna help me get well. Staying positive and having hope and feeling like I've got a chance to beat this...just MIGHT help me get well!

Entering a community like this....it seemed like I needed to ease my way into it a little....get to know the "feel" or the "tone" of the community. Quite honestly, from my vantage point....it's not the old time, active members of this community that you are apt to see posting statistics or links to articles that can scare the cr*p out of people. I've not seen it often...but those who have posted something that was distressing to me (and which I generally refuse to finish reading) has either been someone rather new to this community.....OR someone who joined a long time ago, but rarely posts UNLESS they have some distressing news or statistic to share! Anyone else notice that?

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I sure hope this statistics thing didn't get started because of my post about information for long term. Other than my post, which I meant only to be supportive of all of us that are NED at present, I haven't seen another post using statistics at all. If I am to blame please call it to my attention. I would never want to hurt anyone or provide information that someone might not want to know.

Nina

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No Nina it was not you. At first I was sorry that I got this discussion started but now I am glad. It has given people a chance to get a lot off of their chests. It has also given us all a chance to know one another better. I am so sorry if I made you second guess yourself. That was never my intention to anyone.

Actually writing the post was to try to say that I understand how hurt and angry the person was who did write the message that upset me. I know how very hard those first days and weeks are. That is why I checked my anger and tried to explain how and why I feel the way I do about statistics. I wanted that person and everyone to know how important hope is. I just feel that their is a time and place for everything and this is not the place for statisticsat least not the doom and gloom kind. I know that others disagree with me and many agree with me. That is to be expected. Hopefully the time will come when there will be no more need for statistics because everyone will survive.

Once again I am sorry if I upset you or anyone. That was never my intention. Lillian

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I guess the sad thing about this is that the person who apparently wrote the "wrong thing" has not posted since. This is not the first time a person who someone/anyone has believed has said the wrong thing has not posted again.--not to mention the people I know of who quit posting when their treatments stop working because they don't want others to lose hope. Or those who keep what is really happening to them inside themselves for the same reasons.

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