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lilyjohn

statistics, emotions and attitude, good and bad

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Everyone who has read my posts have learned one thing about me if nothing else. I am totaly honest about my thoughts and feelings. I am the first to admit that sometimes not everyone wants to hear some of the things that I say. I know that many of my thoughts are colored by my bad experiences and my loss. There are times that I still have a lot of anger and that will sneak into some of my posts. No matter what I have said I have never recieved a slap on the hand even if at times I may have deserved one. In most cases those things are just politely ignored.

During the past few days we have seen and felt many emotions here. We lost three members of our family and have many more that we are concerned about. There has been an outpouring of compassion and many tears along with words of support. We have also seem new anger and self doubts and new fears from new people added to those we already have. It has been a very hard few days. I think my intention is to address some of those things that emotions have brought out.

I am very protective of the ones I love. I have grown to love the people in this family here. When one of our dearest, wisest and most giving memebers recieved what I saw as a verbal repremand I got very angry. My first impulse was to write a post saying "don't you dare". I was ready to type when a little voice in my head said "stop and think. Consider the source." "Consider the sourse" that is a phrase that I have heard many times in my life. Usually it would mean that the person who made the remark just doesn't matter enough to worry. Now when I hear that phrase it has new meaning. There is no one here that doesn't matter. No matter how long they have been here be it years or hours.

I remember what it was like in the begining when first hearing the word cancer :( I remember the days waiting for confirmation and my denial. I think everyone knows that I have a lot of questions about Johnny's diagnosis but never the less the diagnosis we got was what we had to live with. Once that word is spoken there is no going back. There is no denail and no way around what lays ahead. The fear eats at our insides but if it is a loved one that has cancer we try to be up beat and hide our own fears. Most of the time it doesn't work because they know us so well. Still we do what we have to do to get by. We become very protective of both our loved one and our relationship with them.

So now when someone does or says something that makes me angry I do consider the source. That is usually someone who is in the same place I was at one time. It is just so easy to lash out at the world or one person. When your heart is breaking. Some people can deal only with what they see as facts. Others don't want facts they just want hope. Some want both.

One recent thread that we have all be posting to asks why we stay. Why are we here? I already posted there. I know that when I first came many of my reasons were not the best. I wanted to lash out and find a way to get even with the ones who hurt me. I wanted to have a place for my anger and my tears. It took a while for me to learn what the real value of this board is. That value is in the love and compassion that is shown here every single day. It is in the knowledge that can only come from those who are in the battle now or have been there win or lose.

Not long ago there was a very active discussion about statistics. The truth is that is the one thing that no one comes here for. You can go in hundreds of places to get statisitcs. Every time you have someone look at you sideways or see a knowing look in someones eyes you are reminded of those statistics. Every time a doctor gives a time limit in months or years he is going by statistics. Statistics are not only very wrong in this day and age but they just damn stink!

Those statistics play a major role in the attitude that we see every day. The attitude that makes doctors give poor prognosis. The attitude that makes people treat someone like a "dead man walking" Those statistics feed that deadly attitude that robs people of hope. The statistics feed the attitude and the attitude feeds the statistics. So I am asking anyone who has statistics in there mind to leave them at the door when you enter here. This is no place for statistics. It is a place for love, support, laughs and tears. It is a place to share anger, sorrow and heartache. You will find that no matter how much you give you will always get back so much more. And you can bet those statistics are 100%.

It is not my intention to make anyone angry or to have them feel bad. I think everyone should be welcome here. No one here is the enemy. The enemy here is CANCER and that deadly ATTITUDE that robs people of HOPE.

God bless every single one of you. I pray for peace for all of us who have lost someone to this beast and those who are fighting it with everything they have. It doesn't matter if you are getting treatment or have decided agianst it. It takes incredible courage to face each day and live with the beast always there to threaten. You are all my heros.

As for the caregivers. I have been there. I know what it is like to have your heart torn every day. I know what it is like to feel the feer and pain and helplessness. I also know what it is like to look at the person you love and see what they are living with and ache with so much love that you feel it physically. None of us ever want this ride but we couldn't avoid it so now just hold on tight. And if you have someone to hold on to make sure that you hold them tight.

I'm sorry if I have said too much. I just hate this monster. I hate what it does to people and their friends and families. I want to kill it and toss it away and maybe just maybe someday someone will :!:

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Hi

I think I know the post you are referring to, and I do understand why you think it is better that we don't talk about statistics here. However I think that another member simply stating the statistics they have read, and how that made them feel, is not doing anything wrong. I also think that everyone who keeps on bagging out statistics needs to get this into perspective. Apparently statistics are a waste of time, don't mean anything etc.etc. Imagine if you can, going to your doctor, being told you have a terrible illness. You then ask the doctor "what does this mean? Is this serious? Can you give me any indication of my prognosis?". According to those who don't think stats are worth knowing or being researched the doctor would simply have to say to you "nope. Don't have a clue. We don't research or follow-up what happens to people with your illness. I can give you no indication of how this will affect your longevity". Well, I think we would all be mighty p**ssed if this was what happened. Statistics do have a role to play. I think it is wrong to suggest that statistics don't mean anything. That is as crazy as suggesting they mean everything. And people new to this rollercoaster often want to know the statistics. But once knowing them, we can fight them, and do all we can to try to improve them.

Jana

xx

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I agree with Jana, but I do think it's our job to encourage others to know that the statistics are changing constantly and they most definitely can be beat. I also read the post she is referring to and I think it was just another one of those misunderstandings. Obviously, no hurt was intended, but I can see why the reader took the comment the way he did. It will be ok. I also know that a lot of people say the statistics are "wrong". I think they are pretty close to being accurate, plus or minus a few percentage points, however, only as they relate to the time period to which they apply - which is not now.

Peggy

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Lily- I second Jane, that was beautiful. I am very thankful that Haylee told me about this board. As a caregiver for my husband, this board is almost the only "comfort" I can find. The support on this board absolutely amazes me. The wealth of information that can be obtained from this board, from people who have been where you are, or are in the place of those we love is also another amazing aspect of this board. I am not the one with cancer, my husband is. I truly wish I could get him to vistit such a place, but he will not. I have gained more from my "virtual" friends then I have from the real people in my life. Not because they do not give support, but because they do not understand, but everyone here does.

Thank you all very much for your support, I TRULY apprecaite each and every one of you. And, for those of you battling this horrible demon, I admire your courage, strength and compassion.

Renee

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"As for the caregivers. I have been there. I know what it is like to have your heart torn every day. I know what it is like to feel the feer and pain and helplessness. I also know what it is like to look at the person you love and see what they are living with and ache with so much love that you feel it physically. None of us ever want this ride but we couldn't avoid it so now just hold on tight. And if you have someone to hold on to make sure that you hold them tight."

Thanks Lily, you have summed up my caregiver experience perfectly. I realized this weekend that I have not really been "looking" at my mom, because when I really took the time to "look" at her this weekend, it bought on a whole new level of pain I did not know existed. Cancer just sucks.

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"Those statistics play a major role in the attitude that we see every day. The attitude that makes doctors give poor prognosis. The attitude that makes people treat someone like a "dead man walking" Those statistics feed that deadly attitude that robs people of hope. The statistics feed the attitude and the attitude feeds the statistics. So I am asking anyone who has statistics in there mind to leave them at the door when you enter here. This is no place for statistics. It is a place for love, support, laughs and tears. It is a place to share anger, sorrow and heartache. You will find that no matter how much you give you will always get back so much more. And you can bet those statistics are 100%.

It is not my intention to make anyone angry or to have them feel bad. I think everyone should be welcome here. No one here is the enemy. The enemy here is CANCER and that deadly ATTITUDE that robs people of HOPE."

This is amazing. Thanks so much for these very wise words.

Dianne

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I appreciate everything that all of you wrote.

I think there are several things we need to remember, in my opinion

1. There is no right and wrong response to the Dx be it of ourselves or someone we love. No one should judge the pain of another.

2. The statistics for lung cancer may have improved, though the latest ones released are nearly as dismal as the previous ones. If we ignore that fact, then we won't do the kinds of things necessary to try to get adequate funding for research for cures and treatments.

3. There is NO person who is without hope. Hope is hardwired into the human body, mind and soul.

4. Even the most hopeful of person can not and often does not beat certain stages and forms and histiologies of cancer. To not accept this fact, places an inordinate amount of blame on the person with cancer and possibly his or her family and loved ones.

5. Sometimes we write things in such a way that we arent really saying what we mean. Sometimes language fails us or we fail it.

6. No one person on the board is more important nor necessarily wiser than another.

7. I hope we don't end up as a place where people are ashamed or afraid to voice their true opinions, thoughts or feelings.

elaine

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Thank you everyone for your responses.

When I was caring for people in the beginning stages of Alzhiemer's and seeing some that were much more advanced I said that it robbed a person of their live long before it took their life. I see the same thing with lung cancer.

When my mom was dying in many ways she was fortunate because God saw what she needed and gave it to her. Because of the cancer or what ever had caused it had gone to her brain she didn't feel the pain. She didn't feel the fear. At least if she did it never showed. That was a blessing to her but it broke my heart every day.

One of the hardest things to battle with any kind of cancer much less lung cancer is the fear. The fear of the one with cancer and the fear of the ones who love them. Even now two years after dealing with it everyday I still battle with that fear. I remember the fear that Johnny had and that is the hardest thing of all for me to live with. I haunts me every day of my life. That fear was under control most of the time until one careless remark by a nurse spouting out the reasons not to hope for a cure or remission made it one thousand times worse. He took his hope away and the fear took over.

That fear never goes away. It is always there like a sword hanging over your head. It is hard when you are angry or afraid to not lash out in fear. It is hard to not want others to know and feel the fear that you do. Somehow it almost feels like if they do it will make it better but it doesn't. No matter how up beat you are. No matter how determined you are it is always there. It is the monster hiding under the bed as Snowflake has so aptly described it. Late at night it comes out of hiding and threatens and does all of the damage it can get away with.

I can't see anyone wanting to add to that fear. Doctors have a job to do and yes at times it is hard. At times they may feel the hopelessness. Part of their job is to keep a person's quality of life as high as it can be. Spouting off statistics or giving time limits or just showing that they only expect the worse gives that fear all it needs to grow and destroy that quality of life.

I know what that attitude can do. I know what fear can do. It can eat at the mind and take a person's life just as surly as the cancer can. All I want is to see that it is not made worse than it already is. I want to see it stopped. I want doctors and everyone else to just stop and think and realize what they are doing when they act like a person is already dead or dying.

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7. I hope we don't end up as a place where people are ashamed or afraid to voice their true opinions, thoughts or feelings.

Elaine,

I have a slight disagreement with this sentiment. I think that people should voice their thoughts and feelings, but also consider their audience. Many of the most supportive people here have LOST their loved ones or are going through the "worst case scenario". I don't think that someone who is supporting others should constantly be reminded of the precarious footing they have themselves - and shame on someone that would push that person who was on shaky emotional ground and still reaching out to help....

Everyone needs to work through this huge knee in the gut in their own way, their own time...but compassion on BOTH sides is needed. The people who offer support are hurting, too. There is a point where it shouldn't be "all about me" it should be a team mentality, give and take. It's one thing to take the support that is offered, another entirely to take the support AND tread on someone else's hope.

Geez, I hope that made sense, my head is foggy and it's hard to explain my feelings right now... I'm NOT saying not to post feelings and I'm not saying that everyone should be treated with kid gloves, I'm from the "sh*t happens" camp, I have a tendency to tell it like it is - but I try to think of others when I post... I have disagreed many times on the board, but I try to see their point of view and respect quite a few of the people I disagree with (and they all know who they are, I'm sure).

Bottom line: Play nice!

Becky

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"4. Even the most hopeful of person can not and often does not beat certain stages and forms and histiologies of cancer. To not accept this fact, places an inordinate amount of blame on the person with cancer and possibly his or her family and loved ones. "

Elaine, I agree and disagree with this -- somewhat! (How's that for fence sitting???)

I have a sister who is (almost) 68 years old. She had a heart attack almost 2 years ago, and lives with heart disease every day. In many ways, she is so very similar to me, yet vastly different in that her disease carries with it a very high rate of survival as long as she follows a healthy regimen of diet, exercise, medication, etc. Even so, she still has a fear (as do those of us who care about her) that she will have another heart attack one of these days and won't come through it as well as she did before.

When my diagnosis came about and after the initial shock/anger/etc. wore off somewhat, I set about doing what I knew I must do -- getting my will updated, getting my living will/POA done, getting info about hospice, home health care, etc., and trying to make some lists of what things I'd like to go to which people. Once that was done, I wanted to talk to my sister (closest relative) and other family members and friends about my wishes -- just once, and call it done.

I still haven't been able to have "the talk" mostly because my sister doesn't want to hear anything other than that the chemo/radiation will get rid of the cancer, and it won't ever come back, or if it does come back, it will be long after she's gone. :(

This isn't about her having more hope than I have, it's about her being unable to face what I may have to face. I'll do what I can to help her through this, but she will eventually have to face facts.

As to the HOPE part of all this, if they tell me that my cancer is 99% fatal, then I know that somewhere there are REAL people making up that 1% and I want to be one of THEM, by golly. THAT is hope by my definition. Whatever the numbers or odds or statistics, as long as there is room for even ONE person in the minority figures, I want to be THAT person, and that's what I shoot for -- it's what I HOPE for.

Yes, numbers can be dismal, but so far I've already added (according to the docs) a lot to the ones I started out with, so I'm headed in the right direction. All I can do is what I'm doing now - paying attention to my body, taking the treatments, remaining involved in my care, and holding my treatment team responsible for their part in this.

Yes, I have HOPE and will as long as there is a chance I can work toward the goals I set out for myself.

Dianne

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I have seen statistics be right and wrong. I think its good they are there

and help people know what type of fight they are up against. I have told

this story several times here on the board. I like repeating it for it does

give people hope and knowledge that statistics can be wrong. My girlfriend Laura her mother was given 6 months to live by the doctors.

Her name was Patty and she had a terminal cancer and she just said

that is what you think to the doctor who told her the statistics on her type

of cancer. Patty lived almost 7 years and died unrelated to her cancer.

With my mom and her lung cancer the oncologist told her 6 to 8 months

and she lived 7 months. My mom was glad she knew for there was alot

she wanted to do and get done and she did. Haylee

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Diane

I am not sure how it is that we are disagreeing. I think we agree. Anyway, I am agreeing with you. I don't really want to be around doom and gloom, but what is also very hard is being around complete denial. I have to fight both gloom/doom and denial within myself from time to time. But when I want or need to talk about the reality of what I am facing AND the possibility of what I could face, it is so hard to be met with denial. I know intellectually, that it is probable that such persons are really tryng to protect themselves not only from the pain they may be feeling about losing me, but also about their own unreconciled fears etc about their own mortality.

It's hard all the way around.

love

elaine

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Elaine writes:

"I know intellectually, that it is probable that such persons are really tryng to protect themselves not only from the pain they may be feeling about losing me, but also about their own unreconciled fears etc about their own mortality.

It's hard all the way around."

I think we agree too! I just can't let it hold me back, so I'm more or less at the point where I will have to have THE talk with my sister, and if she doesn't want to get into reality, I will go to my brother who can and will. I had some concerns about my living will and POA, because although she says she can, I'm not sure my sister could make the tough decisions if I were incapable of doing so. What I did was to have the document drawn up so that it stands on its own, with or without her. In other words, I've stated in the document what I do/don't want, and she can't override that.

The one I have the hardest time with is my 91 year old mother. We jokingly say to her all the time that she is in better shape than all 3 of her kids, and she is! She comes out of her medical appointments with flying colors! It was hard a few years ago when my sister had her heart attack, because my mother is 1,000 miles away and SO worried. We talked to her on the phone a lot, but it was at least a week or so after my sister came home from the hospital before she would even talk to her on the phone. I've called my mother at least once a week since my diagnosis, and I make sure she knows what is going on. I try to point out to her the good and the bad, but I do filter what I say to her a bit so that she doesn't obsess about my condition. She will be here for a visit soon, and I hope that when I'm done with chemo/radiation that I can go home to stay with her for a week or so. Not only is she getting a little frantic to see me in person, I really miss her and want to see her too.

The way I've tried to go about this is to just deal with the practical part once and then move on -- such as the living will, will, POA, etc., including THE talk with the family. I only have a few easy requests, and other than that, they can light a match to everything I have if that's what they want! I don't like running into denial either -- but I really do understand it.

(Elaine -- thanks so much, and to the rest of you too. I'm enjoying this discussion and the various points of view.)

Dianne

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I agree that it is important to have statistics. How will the medical community know what type of treatment to offer at any particular stage of the disease if they are not able to be guided by statistics? That being said, I agree with Lily that it is abhorrent for any medical practitioner to take away a patient's hope. If we are going to accept the statistics for what they are, then we also need to acknowledge the fact that there is a small percentage of people who DO beat the odds. I believe a doctor's role is to be honest with the patient about the seriousness of their illness, but to reassure them that everything possible will be done to help the patient fall on the 'right' side of the statistical fence. My Mum went to her doctor in a positive and optomistic frame of mind, and was essentially advised by him to go home and wait until she developed symptoms for which she could then receive some palliative treatment. Mum is in very good health, and asymptomatic. I find it ridiculous that a doctor would encourage someone in her situation to not seek treatment (unless it was by her own choice of course). Some people respond fantastically well to chemo, and there is no way of predicting who that is going to be. As it happens, Mum had a 'moderate but significant response' to her first-line treatment, which is all the chemo that she has had at this time. It has also bought some time during which my Dad has been able to thoroughly investigage a range of non-traditional therapies, some of which Mum has adopted and been using for quite some time. One year post-diagnosis, she remains asymptomatic, and as far as we can tell, the disease has not really progressed. That is pretty much going against the statistical trend!!!

BELIEVE in your ability to beat this disease - its half the battle!!

Karen

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I wish everyone could just remember that statistics are just that.....statistics. They actually ARE based on outcomes of real people. And we all need to remember that these real people have a variety of other factors BESIDES just their diagnosis that affects their outcome. If people choose to ignore the stats, or believe they are wrong, that is their choice.

Having said that, statistics should not be related to hope. Where there is breath, where there is life.....there is always hope. No-one should ever let anyone or anything take that away. I never meant it to come across that I was implying anything like that.

Jana

xxxx

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I started this thread with the intention of heading off what I saw as a potential controversy. When it stated to appear that it had just the opposite effect I was very upset. My first instinct was to say that I should have kept my thoughts to myself.

I had buisiness in town and that drive gives the mind a chance to relax. I see that there is no way that I could have kept my mouth(in this case my fingers) shut. It is just not my nature to do that and I went against my nature for far too many years.

After some serious thought I have come to the conclusion that maybe this small controversy is a good thing after all. These are things that are obviously on everyone's mind. I think that any one who becomes personally aquainted with lung cancer has these thoughts. They are side effects of the cancer just as surely as some other well known ones are. so having said that here I go again.

Elaine you brought up some very valid points. I have to admit that there have been many times I read a post and think that person is in denial. There have also been times when I see someone take an action or learn of a medication they are taking that I want to scream a warning. That is because of my personal experience. The thing is I have learned that no one makes these decisions with out a lot of thought. The things I would say to them are things they have already had to deal with. They make a decision and then live with it. There are too many things that we can beat ourselves up for when we lose someone. I think you have seen that in not only my posts but quite a few others. They don't need me adding more.

Denial can be bad but in some ways it can also be good. I am willing to bet that there is not one person here that have not searched for those statiscs. They are branded in our minds. We don't need constant reminders. As it has been pointed out they do have some value but that value does not come from shoving them down the throats of the ones who will become a part of those statistics one way or another.

Denial keeps one small ray of hope alive. I believe that hope should be nurtured not destroyed. It is denial that keeps a family together when they watch a loved one dying. It is denial that gives people the hope they need to meet each day with it's joys and heartbreaks. Without the denial it would be very hard to find that hope. When you watch someone you love die a part of your world dies too. You have to be there for them and yourself. When they breathe their final breath reality hits like a hammer. It's hard enough to deal with but if you have spent days, weeks , months or even years with no hope it will destroy you.

I had a very dear friend. He was married to my daughter in law's sister. One morning he went to work just like he always had. That day he had a serious accident. It left him with a large part of his brain missing. By rights he should have died but he didn't. Not then. At first everyone went to see him. As time passed most people stayed away. To them it was hopeless he would never get any better. They were right about that but I just could not give up on him.

I knew his condition. I saw him lay in the bed month after month unable to move even one knuckle of his finger. I listened as the people around him talked in front of him about his condition and it made me angry. How did they know that he couldn't hear and understand. Logic says he couldn't but I never believed that. I knew that everyone was right but there was just a small ray of denial. One small ray of hope that I just couldn't let go. I made the 125 mile round trip two or three times a week to see him. Often after working all day. I just could not give up.

I would hold his hand and talk to him. I told him everything that was going on. I talked about the fishing trips that we had taken. I talked about the Hibiscus that we both loved. I would tell him that I knew that he was in there somewhere. There were times while I was talking to him that he would start to sob and the tears would run down his cheeks. I always believed it was because I knew he was still there. I didn't just write him off. If not for that one small spec of denial I would have lost hope and I wouldn't have been there for him. His wife knew the facts too but she was there because she still had that one small ray of hope. If not for that he would have spent the two years that he lived completely alone, locked in a world that none of us could possibly imagine.

I will always believe it was because of my dedication to him. Because of my hope that God saw fit to give me and Johnny the time we had together. He knew of our love and knew that I wouldn't leave him alone. He gave us a chance to renew the love that we had known so many years ago. I have suffered so much because of my love for Johnny and what his death has done to me but I wouldn't have missed it for the world. Without hope and denial I would have missed so much.

No one deserves to feel hopeless. I know what that is like. I lived with hopelessness for months after Johnny's death. If there is a Hell that Hell must surely be named hopeless :!:

So I go on and on and on again. I just want everyone to be nice to each other. I want everyone to think of the impact their words can have on someone. I want everyone to have that one small ray of HOPE :!:

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I don't think your post has become controversial! In my opinion, it has become evident that we all pretty much agree on this issue!

Statistics are a necessary evil in the fight against all types of illness and disease. We just need to be sure that we do not let them, on their own, dictate our individual responses.

And Lily, whilst I agree that there are possibly a few people who ARE in denial about their condition ( I do remember seeing the odd post where the patient refused to accept that they had cancer), I think that most people here are only too aware of the realities of their situation. I believe that what you are referring to as denial, is actually HOPE, pure and simple. It's focusing on the possibility of achieving a good outcome, rather than the likelihood of a poor outcome. (I don't mean for that paragraph to sound argumentative!! You have used both terms in your post, and I think that hope is really all you are referring to. You still don't know whether your friend did or did not in fact have any awareness of your presence - it would only be denial if we knew for a fact that people in these situations are oblivious to the outside world - I don't see how we will EVER be privvy to that information!!)

Someone once posted that there is no such thing as false hope - only HOPE. I think this thread has been very valuable, and I HOPE that it will will provide inspiration for many on this board!

Karen

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I think I made an error when I said that about people in denial. It really came out wrong. I don't think anyone here is in that kind of denial. I was speaking of my own reaction to some things that have caused me pain. Things that when I see them I feel like people are denying their potential harm. I know that is colored by my own personal experiences.

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Disclaimer: When I was writing about people being in denial, I was referring to people in my own life and my experience with being in denial. I did not intend to suggest that anyone on the board is in denial.

I will say that denial is one coping method and that it isn't necessarily always negative.

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I haven't been diagnosed with cancer so I can't personally relate to denial regarding that. But I do think that in general sometimes we go into denial as a way of protecting ourselves until we are better able to deal with reality. Maybe it is the mind's way of protecting itself and when we are ready to deal with reality, then we allow ourselves to acknowledge it. I don't know really......just a thought

with love

Jana

xxxx

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