lilyjohn
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Hi Dean
I haven't seen you post in a while and am wondering if all is well with you. I am hoping the reason that you are "missing" for a while is that you have your scooter now and are out enjoying that Southern California sunshine. Please let us hear from you and tell us all about that new scooter.
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> In the city of Chicago, one cold, dark night, a blizzard was
setting in.
> > A little boy was selling newspapers on the corner, the people were
in and outof the cold. The little boy was so cold that he wasn't trying to
> sell many papers.
> > > >
> He walked up to a policeman and said, "Mister, you wouldn't happen
> to knowwhere a poor boy could find a warm place to sleep tonight would
you?
> > Yousee, I sleep in a box up around the corner there and down the
alley and it's awful cold in there for tonight. Sure would be nice to have a
> > warm place to stay."
> > > >
> >The policeman looked down at the little boy and said, "You go down
> the street to that big white house and you knock on the door. When
they comeout the door you just say John 3:16, and they will let you in."
> > > >
> >So he did. He walked up the steps and knocked on the door, and a
> lady answered. He looked up and said, "John 3:16." The lady said, "Come
> on in, Son."
She took him in and she sat him down in a split bottom
rocker in front of a great big old fireplace, and she went off.
The boy sat there for a while and thought to himself: John 3:16...
I don't understand it,but it sure makes a cold boy warm.
> > > >
> Later she came back and asked him "Are you hungry?" He said,
"Well, just a little. I haven't eaten in a couple of days, and I guess I could
> stand a little bit of food,"
The lady took him in the kitchen and sat him
> down to a table full of wonderful food. He ate and ate until he couldn't eat
> any more. Then he thought to himself: John 3:16...Boy, I sure don't
understand it but it sure makes a hungry boy full.
> > > >
She took him upstairs to a bathroom to a huge bathtub filled with
> warm water, and he sat there and soaked for a while. As he soaked, he
> > thought to himself: John 3:16... I sure don't understand it, but it sure
makes a dirty boy clean. You know, I've not had a bath, a real bath, in my whole
> > life. The only bath I ever had was when I stood in front of that big old
> fire hydrant as they flushed it out.
> > > >
> > The lady came in and got him. She took him to a room, tucked him
> into a big old feather bed, pulled the covers up around his neck, kissed him
> > goodnight and turned out the lights. As he lay in the darkness and looked
out the window at the snow coming down on that cold night, he thought to
> himself: John 3:16...I don't understand it but it sure makes a tired boy
> > rested.
> > > >
> > The next morning the lady came back up and took him down again to
> that same big table full of food. After he ate, she took him back to that
same
> > big old split bottom rocker in front of the fireplace and picked up a
> big old Bible. She sat down in front of him and looked into his young
face.
> > > >
> > "Do you understand John 3:16?" she asked gently.
> He replied, "No, Ma'am, I don't. The first time I ever heard it
was last night when the policeman told me to use it,"
She opened the Bible to John 3:16 and began to explain to him about Jesus.
Right there, in
front of that big old fireplace, he gave his heart and life to Jesus. He sat
there and thought: John 3:16....don't understand it, but it sure makes a
lost boy feel safe.
> > > >
> > You know, I have to confess I don't understand it either, how God
> was willing to send His Son to die for me, and how Jesus would agree
to do such a thing. I don't understand the agony of the Father and every
angel in heaven as they watched Jesus suffer and die.
I don't understand the intense love for ME that kept Jesus on the cross till the end. I don't
> > understand it, but it sure does make life worth living.
> > > >
> > John 3:16 " For God so loved the world, that he gave his only begotten Son,
that whosoever believeth in him should not perish, but have everlasting
> > life.
> >
> > If you aren't ashamed to do this, please follow the directions.
> Jesus said, "If you are ashamed of me, I will be ashamed of you before my Father."
> >
Pass this on only if you mean it. I do Love God. He is my source of
> > existence. He keeps me functioning each and every day. Phil 4:13
> > > >
If you love God and are not ashamed of all the marvelous things he
> has done for you, send this on.
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Okay now let's back up here for a minute. You have a disease. It came to you without you requesting it. Thousands of people get it without smoking. Millions of people smoke with some getting lung cancer and many others not. NO ONE absolutely NO ONE deserves lung cancer or any other kind of cancer. It is a monster that sneaks up on you without warning. Saying that you are ashamed makes it sound like you asked for it. YOU DID NOT ASK FOR IT. Lose the shame and guilt and prepare for the fight of your life. Do it knowing that you deserve to live and live without lung cancer. That is the first step that you need to take.
Now as for your children. You are their mother and from what you say they love you and show that they do. Yes they will be hurt and frightened but they will get over it. Give them the credit they deserve. This is not a fight to fight alone. You need everyone who loves you in your corner for support and to help with gathering information and many other things.
Tell your children that you know that smoking COULD be the reason for your cancer but that it is not certain and does not mean that you wanted it nor that you don't need them. Then direct them to this board. Maybe they can learn some things at the same time you do. Once again this is NOT your fault. God Bless you and help you in your fight and above all in your battle with yourself.
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I'm going to say something here that might not be very popular but here goes. You mention all of the money spent on other things and still there is no cure for cancer. What I have to say is really a question and gives us all something to think about..
If A cure were found for cancer what would happen to not only the national economy but the worlds economy?
Money is spent where it produces more money. Not where it can cost money to so many of the worlds or nations taxes and finances!
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Thank you for the information. I may end up trying one of the herbs you mentioned. I seem be be having periods of depression and after what I saw with Johnny I'm terrified of most medications. What about the different herbs used for making tea? I have heard that some of them are very calming. I just can't remember the ones I heard about. I like tea and feel it would be the best way to test the effects without trying a large dose.
The information you give is very interesting and upsetting. I wanted to try something like that for Johnny when his anxiety got so bad. The advice from the doctors was don't take anything even in the form of tea. No herbs and no vitamins other than a multivitamin. Because of their advice we never tried anything. I feel it all goes along with the out dated and selfish approach of many doctors toward lung cancer. They consider anything that is not drugs as alternative treatment and denounce it. That is not only a shame but very harmful.
It amazes me that we are told by our doctors all of our lives that eating right, exercise and good habits will not only make us feel better but improve our health. Mention cancer and they do a complete turn around. They not only tell you that those things don't help but warn you against them. That is just one more thing that has led to a deep distrust of most doctors especially oncologists. I feel like they think they know everything even more than God. Hopefully some day they will be forced to see how wrong they are.
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My emotions are so raw sometimes and they are so mixed up. I'm not sure if I am the only one who feels some of these things but I suspect that I am not. I just feel an overwhelming need to share them here. I don't want to hurt anyones feelings or make them doubt my concern and love for everyone on this board. I'm afriad that some of the things I will say may be as painful for someone else as they are for me.
I come here often for support and to try to give support. Some how connecting with everyone here makes me feel closer to Johnny. I see and feel the pain and fear of every person who posts here. It doesn't matter if it is someone new just starting on this long road of pain or those who have been engaged in the battle for years or even months. I know too there are many like myself who have lost someone so close and so much a part of their lives that they are trying to not only go on but wonder sometime if it is even worth it. That is why some of my emotions fill me with such guilt.
I want everyone to beat this monster. I hate it for what it has robbed me of and what it has and is robbing all of you of. It's just that sometimes I get so jealous and angry. I see someone new come here frightened and confused but I see that they have it all ahead of them. They still have a chance to learn and maybe somehow save themselves or their loved one. They still have time ahead of them together. Time that I don't have and it hurts and makes me angry and jealous. I feel your pain and ache for you but I feel my pain too.
Then I see the ones who are fighting so hard. It doen't matter if you are winning or losing. You are still fighting and some have been here so long. I see that and I ache for you but I can't help but say "Why you? Why do you have the chance that Johnny didn't have? Why are you stilll here months or years into your fight and he is gone? Gone so soon and not given the chance he wanted to fight for his life. I feel so guilty and ashamed of those feelings. I know how selfish I sound and I hate that but I can't stop it.
I want so much to find a way to help. I want to make changes and feel that Johnny's death can bring something besides such terrible pain. I'm just not sure how to do that. I'm not even sure how to live from day to day anymore. How can I know what to do to help others when I don't know how to help myself?
Now I am faced with another problem. It has been there sense Johnny's death but I tried to ignore it and hoped that the situation would solve itself but it hasn't and I can't ignore it any more. It is about Johnny's little dog Misty.
For nine years before I came back into Johnny's life Misty was his constant companion. She gave him the only uncondtional love that he craved so much. He shared everything with her and loved her so much. He called her his little camping buddy. He spoiled her and she had so many bad habits. At least they were bad habits to me but not really to him. To him they were just part of the love that they shared.
Once we were together I took care of her as well as him. She gained weight and looked so much better. He was just so proud of the way that I took care of her. I handled her physical needs and he gave her the love that she needed. He started saying that she was our dog not just his. I wanted to care for her for him but I also wanted to break some of those bad habits. I didn't think it was good to let her beg while we were eating and asked him not to share his food with her all of the time.. He complied with my wishes.. Her hair is white and like wire and sticks into everything so I didn't allow her on the furniture and he agreed with that too even tho for all of her life she had slept on his bed with him. I look back now and I know that I robbed them both of things that they had been sharing and I think that is the root of the problem I have now but I don't know what to do about it.
I take good care of her and I know that deep down I love her too. I just can't show her the affection that I know she craves. She is so loyal and watches me so expectantly and I know she is waiting for the show of love that Johnny gave to her. I just can't do it. In my mind she is still Johnny's dog even after all of this time. It is almost as if I am afraid to give her the affection that she needs because I didn't give it to her while Johnny was alive. I think a part of me feels guilt for what I took away from them. How can I give her now what I didn't when he was here and could have enjoyed it? I want so much to give her what she needs but somehow that block is there in my heart and I can't get around it. I feel so guilty because I know how much she needs my affection and I know how much Johnny trusted me to care for her. I know that I am letting him down.
I know that he is still imprinted in her mind. She sees a man and she flirts outragously with him. When we are walking she pulls her leash and tries so hard to reach any man that she sees. If I play the video I have and she hears his voice she stays in front of the television for the rest of the day. She is cute and small and strangers that to her. They give her everything that I can't. I guess what I am asking is has anyone else had this kind of problem with a pet? I'm asking too that you pray for me to find a way to melt this block of ice in my heart so I can give her what she needs most.
Sometimes I wonder if there will ever come a day when the hurt and confusion will leave me alone for more than just a few minutes at a time. I'm so sorry if the things I have said here offend any one. That is not want I want to do. I love all of you and wish you the very best. I just feel so lost and don't know how to cope with so many of the things in life.
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Johnny gained thirty pounds in less than three months. I would look at him and the other people that started the same day he did and think he just doesn't fit in. They were all losing weight and getting weaker and he was gaining and getting stronger. They lost all of their hair and he only lost about half or a little more. His eyebrows even stayed thickand he had to continue shaving. I guess everyone is effected differently. Some lucky few have no real problems. Just be glad she is doing so well and enjoy every minute of her.
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My problem is that I want to meet people but shy away from them. A hello to a neighbor while walking my dog is enough for me most of the time. None of them have anything in common with me. Most of them have families or are a couple. My own family other than my niece are thousands of miles away. I have no interest in men what so ever other than as a friend or aquaintance to say a few words to. I had the best with Johnny. Why would I settle for less? I had second best for far too many years. Mine and Johnny's relationship was perfect now nothing less will do. That can not happen again.
Most days I feel lost. I have nothing to look forward to and no real dreams. The only thing that I really want is in the past Johnny and his love. I just drift from thing to thing and never settle down for long. Sometimes I think I should be doing something. Yet nothing really seems important enough to do. I don't feel like doing anything. I just think I should be. It almost feels too easy to just do nothing. I am starting to like it and want to just sit here and dream of the past with Johnny. Nothing else seems to keep me interested.
I really need to start looking for a job now but put it off. I'm not sure what I want to do and it seems too difficult to try to find one. I have worked hard all of my life. Sometimes on jobs out of the home but most of the time just being a homemaker and mother. I wanted everything perfect. I always used work to hide from my emotions but that doesn't work any more. I'm just tired and feel like a walk with my dog and sitting looking out the window is enough. I know it is not but other than this message board I really want nothing else. When I connect here or write about our life together I feel like I have him again for a few minutes. Then once more he is gone and I still don't know how to live without him.
It is just so hard and no one knows how hard unless they are here themselves. Kind words help but they don't fill the emptiness. Nothing does.
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After Johnny died and I realized that his treatment was not normal and that had led to an early death I decided to do something about it. I said at the time that he hadn't died because he had cancer but because everybody knew that he did. I filed complaints and strarted researching learning as much as I could. I felt that there were some things that people needed to be made aware of. Things that are often not spoken in public and never addressed by the medical field. Because of that I wrote a paper on my thoughts.
I posted it on many public message boards but was not sure anyone would read it. I was also uncertain if it would pertain to the ones who did read it. Therefore I started posting in on on line message boards and got some very uplifting responses. Still I was not satisfied. I wanted to hit closer to home. I wanted patients that his doctors were treating to become more aware. Because of the claims I had filed and no medical proof, just what I witnessed I could not make a public claim and name names or let my name or Johnny's name be known.
It was just a very few months after Johnny's death but I did one of the hardest things that I had done so far. I printed that paper and one about questions and precautions as well as one on the rule of double effect. I went back to the chemo clinic. It tore my heart out to go to that place again but I felt that I had to. Right down the hall from where we went every week for chemo there is a bathroom. I went into that bathroom and left a stack of those print outs. I only hope that some of the patients or their families got them before someone who worked there did and threw them away. I sure wouldn't mind if one of them got back to the doctors or they got questions from patients about them.
I posted this one here when I first signed onto this board. Sense there are so many necomers here I thought it might be worth posting again. So I copy it here as it was written. The only difference in the ones I left in that bathroom is that I left off mine and Johnny's names.
Two of the respones I got that gave me the determination to keep working for the changes needed were from cancer patients. One told me that she had printed this letter and whenever she started to doubt or lose hope she would read it. Anohter belonged to a breast cancer survivers group. She asked permission to post it in their monthly news letter. I only hope that these things have helped someone and that because of that my Johnny's death was not invain. Once again here are my thoughts and the goals that I work toward. Lillian
It's Time for a Change
It is time for a change in the way cancer is viewed. I recently lost someone very dear to me. It is my belief that it was not the cancer that killed him but mind set. From the minute that he was diagnosed everyone saw him differently. They saw cancer and death. Not a good honest and gentle man.
A diagnosis of cancer is probably the most devastating thing that a person can hear whether it is yourself or a loved one being diagnosed. The first thing we think about is death. It is a mind set that virtually everyone has. We are all guilty. We as loved ones hear the diagnoses and we concentrate so much on fear of the outcome that we are unable for a time to do research and other things that is needed to help the patient. Doctors are guilty because they give medications that can be harmful and addictive with the outlook that the person has cancer they are going to die anyway. They ask what difference does it make. They take hope away from the patient who then has to not only face their own mortality but think of the ones they will leave behind if they die. It can cause extreme anxiety yet that anxiety is overlooked too often. They blame every symptom on the cancer never considering that there could be another problem. This can interfere with treatment and start the person on a down hill slide that is hard to stop. It causes such havoc in a person's life.
I have seen and learned so much in the past few months about cancer and it's side effects. Emotional and mental side effects both in the patient and others. I saw first hand what hope can do and I saw too what taking that hope away can do. It can cause a person to be sucked into a whirlpool of misery that can not only destroy the value of the time they have left if they are terminal but seriously interfere with any chance they may have to fight the cancer or have it go into remission.
We all need to start looking at cancer a whole new way. This is the 21st century. There are many things that can help cancer patients and more being developed everyday. There is hope. It may be a small one in some cases but it is there. We need to nurture that hope not destroy it. Next year or next week a cure could be found. It is out there somewhere and will be found and made available. How sad that so many will die weeks or even days before simply because they are given up on. Because hope has been taken away.
I believe that doctors should be trained to work with a persons mental and emotional health as well as the cancer. They should offer every patient some small ray of hope. If they feel that they no longer see a chance of the treatment they are using working they should offer the patient a chance to become a part of the clinical trials that go on everyday. If they feel their is no longer any hope why not give it a try? They should also be required to tell people that their are alternate treatments that in many cases work. That information should be made available to the patients so they can decide if they want to try them.
Now this is something that is very important to me personally because it had such a tragic outcome for the man I mentioned earlier. Every patient is offered the chance to sign an advanced directive. In many cases that will include a DNR. There are many out there I am sure that will want to do that not wanting to face the suffering that may lay ahead. There are also those who are willing to take that chance. They want the right to fight to live. They make a decision that is right for them. It is not an easy decision to make. Not only do they have to face death but the possibility of a lot of suffering later. It is their right, their choice and their body. No one, doctor or others, should be allowed to badger them or try to force them to change their mind. A doctor should not be allowed to refuse to treat them or stall until it is too late to do what is required to follow those wishes. It is their duty morally and by law to see that those wishes are carried out. Once the decision is made the patient should be left alone. Being constantly called upon to restate that decision or change their mind can cause harm in more ways than one.
It is a terrible thing to have to watch someone you love struggle with the issues that cancer brings into their life. It is even worse seeing the fear and confusion that they live with everyday. Hope can be such a wonderful thing and it can do wonders. Taking away that hope can be as life threatening as the cancer itself. Why not start thinking of cancer as a challenge to be met? There is hope out there tho in many cases it may be a small one it is still there. Why not treat every patient as if they will be one of the good statistics? Who knows maybe that is all it will take to make it so.
I have had some heart rendering experiences the past several months. I don't want to see other people have to go through that. The man I speak of often told me that I should write. I always put him off because I never thought I had anything worthwhile to say. Now because of his death and what we went through together I have found something to write about. His name was John Fields. I dedicate this and all that I can do to change things to him.
Written January 2003
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Dean
Never doubted you for a minute. By the way we should all have such brain cells. What a better world this would be.
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Everyone of us here are thankful for your good news. You have had an experience that not many have. You have seen and felt the fear and now the joy. Please don't ever forget that. You and your dad are very lucky but there are so many every day who get the bad news instead of the good. You have the the chance to turn a bad situation in to something good. You know now even better than ever how precious you loved on is. Hold on to that feeling
Rejoice in your good news but don't forget the experience. Tell people what you learned while visiting with us. You have seen that we have a message that needs to get to the world. Often the people with lung cancer are ignored. We need a spoksman that does not have cancer in their life but understands what it can do. Spread the words you have seen here. Make what you have learned count. Maybe someday you will be a part of someone else hearing the best news there could be. NO CANCER!!
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I don't think I need to tell you how much of an inspiration Dean is. Others have told you that already. You have known it much longer because he has been your "other half" for so long.
I too was fortunate enough to have someone so very special in my life. He gave me strength that I never knew that I had. In so many ways we found ourselves alone in the battle against cancer, anxiety and all of the other things that make up the rollercoaster ride.
The biggest mistake I made was trying to protect him from my fear. I saw his fear and thought adding mine would make it worse. That was a mistake. It cost us dearly. The fear of what was to come robbed us of time that we should have spent sharing. I know now that had we talked about it and shared what we were feeling the burdon would have be so much easier for both of us. My fear made him want to protect me and his made me want to protect him. The problem was that we both knew how the other felt but being afraid to share those feelings made them far worse instead of better.
I spent so much time worrying about what would or could happen that I lost precious time that could have be spent sharing. Had I not ran from my fear and feelings of helplessnes I could have been more help to the love of my life.
No matter how much time you have left together every second is precious. Don't think about the time when he will be gone. He is with you now. Make every second count. You have a very special man and you are a very special lady. He fills your heart and you fill his. That is a gift that you will always have.
Family can help and God knows how much we needed that but sometimes we don't have that as in our case. You do have family. The family that you have found here where Dean has endeared himself to all of us. Please don't be afraid to come here and vent whatever you feel and above all enjoy what you have together it is so special and will keep you going when the time comes that you need strength to face what ever the future holds.
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Welcome back you have been missed. Glad to know that you are surviving even if that survival is not as fulfilling as you would want it to be. The void you speak of is something that becomes a part of you as time passes. You will always know it is there but eventually other things will take you away from it for a while..
I know facing the aniversary of your loves death is in many ways harder than the first few days and weeks. You are no longer able to tell yourself that this is a nightmare that you will wake from. Once that reality hits you it is so hard to deal with. A part of you is missing and where that part is there is an empty spot. I know that I have good moments now. Sometimes I even have whole days that are not really good but more bearable. When we lose someone who we share everything we have and everything we are with nothing can replace them. The void is the spot where they belong. The pain is from having a part of you ripped away.
The only thing that gets me through the worst times is knowing that tho he took so much of me with him he left so much of himself with me. I can still hear his voice and see the smile in his eyes and often the memory of his touch is so strong that it comforts me. These are the things that grow stronger for me instead of weaker. They give me strength because I know that no matter how bad things get for me or how much pain or lonliness I feel I will never lose his love. It lives in me and it strengthens me. Time doesn't heal the pain or fill that void but it makes us realize how lucky we have been to know such a love.
Being in a strange place is very hard because you feel so much more alone. I know I spent the first 4 months after my Johnny died completely alone. Alone and lost. Having to work in some ways helps but in others you feel like you are being robbed of the time you want to spend in memories. Memories that take you back to a time when the world was right side up instead of spinning out of control. I have found that sometimes when I am with other people I am more lonely than ever. No one lived in the world that Johnny and I shared. It was our own special place that no other person could enter. When I'm with other people I feel like they are distracting me and keeping me out of that special private world. They may want to comfort us or they may not even know how much we ache so all they are doing is intruding on our world, our love.
Coming to this message board and being able to share with the people here and know that they understand has done more to help me than anything else. I can let them into my world when I need someone to share with or I can close the door and keep them out when I just want the time alone with my memories. I have family close to me now but most still are many miles away. It helps just knowing someone is close. Being so far away from the others I love can be frightening at times. I want them near but I don't want them always with me.
Please come here as often as you can and feel the need. Maybe you can find a way to move closer to some family or special friend...If you can afford to take as much time off as you need to sort through the feelings that you have. I have found that writing a journal or letters to Johnny help more than just about anything else. When I do those things I remember not only the painful times but the laughter and love. It renews my spirit and gives me a chance to catch my breath before the next time I am hit with that lost feeling. The void doesn't go away, at least is hasn't for me but it is a special place inside of me that no one can go. That is where deep inside of my heart my Johnny lives forever.
Lillian
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Hi Rick
I love the new look but can't help wonder how you do all of that and take care of two little ones? The new look really is great. I do have one suggestion.
Before I found this site I was thinking of a web page that offered support and informanion. Nearly everything that I had in mind is here on this site. The one thing missing is a forum where information on medications can be posted. There are a lot of medications that a person with lung cancer often finds themselves taking. There are often many questions about those medications. Not all medications are chemo and there are drugs that are given with chemo to help with side effects. There are also many drugs that are used for pain or anxiety. Nearly all of them have side effects and many cause unexplained adverse reactions.
I believe that we should have a special place to discuss these medications. There should also be room to post any information we can find on these medications or links to the information. There is so much out there but to find it you sometime have to seach through literally hundreds of web pages. I know when I was looking up information on Morphine I found a number of those pages that contained nothing but an addicts discription of getting high. Others just made no sense at all. Having a place that we can each post what we find plus individual reactions would make it much easier for someone who has questions and no time to spend searching.
This is just a thought but I feel it is an important issue. There is also information on blood gases and anxiety as well as depresion. Some things that are not really a part of lung cancer but go hand in hand with it to cause many serious problems.. I just thought I would give you something to think about. I really do like the new look. Makes us look more profesional maybe that is a start to make some people set up and take notice!!!!!!!!Lillian
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Fear!
I have been having some very serious thoughts this morning and decided there is an issue that needs to be addressed. I will be on my soap box again for a while so please bear with me.
Because of the story that I am writing I have been reliving many things and that has brought me both laughter and pain. My emotions have been so raw that I have spent less time reading or posting here for a few days. To be quite honest there are times that even the good news causes me problems. I'm sure that anyone else who has lost someone can understand that.
Most of the time I have spent reading the posts has been in the laughter forum. I seemed to be needing that for a while to boost my spirits. Last night I started reading the forum on activisim. That has left me with some serious thoughts and I want to share them here.
We have all voiced the desire to change the attitude toward lung cancer and try to get more attention to the plight of the ones affected. That has proven to be a very hard thing to do. I believe I know the reason why. FEAR!
When someone stumbles onto this board it is because in some way they have been affected by lung cancer. Lung cancer is not a subject that any one would research unless they had cause. Personal reasons. Most people today will never admit or even realize that they are superstitious. The truth is everyone is in some way or another. The fear of lung cancer is so strong that everyone is afraid to be associated with it in any way until they are forced to. There is the hidden feeling that to become involved is tempting fate. Lung cancer is so frightening to people that they are actually afraid that if they show interest it will strike them in some way.
The stigma that goes with lung cancer to many is a safety hold. If they don't smoke they don't feel the need to fear it. That as you know causes many people to be caught off guard and go without being diagnosed until the disease is usually more advanced. The fear of lung cancer keeps many ignoring symptoms until they are impossible to ignore any longer.
Fear is the greatest enemy a person with lung cancer or their loved ones has to deal with. Because of the attitude toward lung cancer it is looked at as a death sentence. That attitude is wide spread. Most doctors treat lung cancer with the idea that they are buying time or quality of life. Very few are optomistic that it will be cured. That attitude is often expressed by giving a person a time limit. No matter how much is learned about this disease that attitude has not changed. Right here on this board we see many people who have won the battle and many more who have lived many years and are still fighting. Still every time I speak to someone about lung cancer and Johnny's death I get the same response. I am always told "you should have known what would happen. A person with lung cancer is not going to live more than a year." That statement shows how uninfomed the public is about this disease. Some way that has to be changed. Until it is the battle will always be a battle against not only the disease but fear.
I not only saw but was a part of what that fear can do to a person. Johnny was progressing better than anyone had dreamed or expected. Even his doctors could not believe how well he was doing. Not only had his nodules shrunk by 50% but he gained weight and was stronger and more positive than he had been in years. It took one remark that undermined his determination to plant the seed of doubt. That doubt grew to fear that in the end cost him his life. The very people that he trusted his life to destroyed his hope. That has to change or there will never be recognition of the plight of the people with lung cancer. If the people in charge of treating a person have that attitude how can we ever hope for anyone else to see it differently?
The recent flu epidemic made headlines tho the number of people who died from it was not even a fraction of those who are lost every year to lung cancer. The reason for that is simple. People believe that it can be cured and not only seek treatment but know that everything that is done for them is with the goal of a cure in mind. They have hope! They may fear it but that fear is balanced by the attitude of not only the public but those in the medical field.
In most cases the general public have a sadistic attitude. They media feeds us violence and we read it with relish because it is happening to someone else. We see the things that make headlines as problems that most of us will never have so it is easy to listen and read about them.
Everyone knows that each and everyone of us is vulnerable to cancer. To reach the public and make them aware we have to remove the element of fear. Stories of survival and treatments that are working have to be made public knowledge. The only way that anyone will be willing to look at lung cancer without shying away is when they realize that there is hope. Until we can find a way to make that happen the stigma will remain and the help we seek for research and early detection will be nearly impossible to obtain.
I firmly believe that the place to start is with the doctors who treat lung cancer. If they have no real hope for a cure how can anyone else?
Every means to fight it should be given to a person. That means the latest treatment, alternate treatments(which most doctors tend to ignore), and above all positive attitude and hope. So I say next time a doctor gives some one a time limit tell them that you are not a statisic Tell him that you wish that instead of looking at the statistics he would look at more ways to make those statistics obsolete. Statistics are numbers we are people. That is the difference and it is what makes all of the difference in the fight for life.
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Has any one ever thought what would happen if a newspaper just ran the headline 480 americans died today!
I bet everyone would read it just to see what happened..The trick would be to tell something about some of them before the words lung cancer are mentioned.
Tell about 3 or 4 and how hard they have worked and information about their families. It should tell about the ones who are veterans and have paid their dues to this country but never recieved the same support that they gave our country.
Make it really personal saying that they have been fighting for thier lives but lost because no one bothers to care enough to take notice. Mention that cancer is beatable but only when the public desides that these lives are worth saving just as any other life is. Make a statement about hope and being treated like it will be cured not treating it thinking from the first that it is a lost fight.
All of these things need to be addressed but there has to be someone in the media receptive enough to take the chance. There has to be a way to find that someone. We have to keep trying..Talking about the issue here is good but it needs to get out where it belongs. Where the public can see it and most of all feel it.
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Happy Birthday Gay
Hope you had a wonderful day.
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Congruadulations Dean;
I guess now you don't need me to bombard them with words until they either lose thier minds or change their minds. Just remember when you are on that scooter that the people in front of you are not on one and can't move as fast.
I remember when we would go to WalMart Johnny would ride the scooters there. Boy did he have fun. He liked to threaten to run over me but enjoyed being able to be with me and help me shop. Of coarse his favorite thing was to go to the McDonald's there to wait for me and have coffee. I don't think he ever realized that I knew about the hamburgers he gobbled up while there!! Still the scooter gave him a lot of enjoyment and us a chance to make some memories for me to hold on to.
Have a great time Dean and if you need anything else and they deny you just keep giving them hell until the see they error of their ways. Lillian
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This one should really keep you in stitiches!! One suggestion, if you are on oxygen make sure you have a good supply before you read this. I don't want to be responsible for anyone using all their laughing and then passing out.
Subject: calling in sick
I almost did not survive this email. I was eating popcorn at my desk
while reading this.
Calling in sick to work makes me uncomfortable. No matter how
legitimate my excuse, I always get the feeling that my boss thinks I'm lying.
On one recent occasion, I had a valid reason but lied anyway, because
the truth was just too darned humiliating. I simply mentioned that I
had sustained a head injury, and I hoped I would feel up to coming in the
next day. By then, I reasoned, I could think up a doozy to explain the
bandage on the top of my head.
The accident occurred mainly because I had given in to my wife's
wishes to adopt a cute little kitty. Initially, the new acquisition was no
problem.Then one morning, I was taking my shower after breakfast when I heard
my wife, Deb, call out to me from the kitchen. "Honey! The garbage
disposal is dead again. Please come reset it."
"You know where the button is," I protested through the shower
pitter-patter and steam. "Reset it yourself!"
"But I'm scared!" she persisted. "What if it starts going and sucks me in?"
There was a meaningful pause and then, "C'mon, it'll only take you a
second"
So out I came, dripping wet and buck naked, hoping that my silent
outraged nudity would make a statement about how I perceived her
behavior as extremely cowardly. Sighing loudly, I squatted down and stuck my
head under the sink to find the button. It is the last action I remember
performing.
It struck without warning, and without any respect to my
circumstances.
No, it wasn't the hexed disposal, drawing me into its gnashing metal
teeth.
It was our new kitty, who discovered the f! ascinating dangling objects
she spied hanging between my legs. She had been poised around the
corner and stalked me as I reached under the sink. And, at the precise moment
when I was most vulnerable, she leapt at the toys I unwittingly offered and
snagged them with her needle-like claws.
I lost all rational thought to control orderly bodily movements,
blindly rising at a violent rate of speed, with the full weight of a kitten
> >hanging from my masculine region. Wild animals are sometimes faced with a
"fight or flight" syndrome. Men, in this predicament, choose only the "flight"
option.
I know this from experience. I was fleeing straight up into the air
when the sink and cabinet bluntly and forcefully impeded my ascent. The
impact knocked me out cold.
When I awoke, my wife and the paramedics stood over me. Now there are
not many things in this life worse than finding oneself lying on the
kitchen floor buck naked in front! of a group of "been-there, done-that"
paramedics.
Even worse, having been fully briefed by my wife, the paramedics were
all snorting loudly as they tried to conduct their work, all the while
trying to suppress their hysterical laughter....and not succeeding.
Somehow I lived through it all.A few days later I finally made it back
in to the office, where colleagues tried to coax an explanation out of me
about my head injury. I kept silent, claiming it was too painful to
talk about. Which it was.
"What's the matter?" They all asked, "Cat got
your tongue?"
If they only knew!
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This is not really funny. I was just wondering how many here can relate to these things?? Just a little trip down memory lane.
Subject: Fw: Memories of a Repressed & Abusive Childhood..NOT!
I can see the flaws in this one, but basically it is typical of life in the 40's, 50's and early 60's.
And don't forget the bomb scares in the spring around finals' time, when the whole school was evaculated while they looked through lockers and we had a ball in the nice weather happy for the recess...very innocent, indeed.
My Mom used to cut chicken, chop eggs and spread mayo on the same cutting board with the same knife and no bleach, but we didn't seem to get food poisoning. Actually we seemed a lot healthier back then.
My Mom used to defrost hamburger on the counter AND I used to eat it raw sometimes too, but I can't remember getting E-coli.
Almost all of us would have rather gone swimming in the lake instead of a pristine pool (talk about boring).
The term cell phone would have conjured up a phone in a jail cell, and a pager was the school PA system.
We all took gym, not PE... and risked permanent injury with a pair of high top Ked's (only worn in gym) instead of having cross-training athletic shoes with air cushion soles and built in light reflectors.
I can't recall any injuries but they must have happened because they tell us how much safer we are now.
Flunking gym was not an option... even for stupid kids! I guess PE must be much harder than gym.
Every year, someone taught the whole school a lesson by running in the halls with leather soles ! on linoleum tile and hitting the wet spot. How much better off would we be today if we only knew we could have sued the school system.
Speaking of school, we all said prayers and the pledge and staying in detention after school caught all sorts of negative attention. We must have had horribly damaged psyches.
I can't understand it. Schools didn't offer 14 year olds an abortion or condoms (we wouldn't have known what either was anyway) but they did give us couple of baby aspirin and cough syrup if we started getting the sniffles. What an archaic health system we had then. Remember school nurses? Ours wore a hat and everything.
I thought that I was supposed to accomplish something before I was allowed to be proud of myself.
I just can't recall how bored we were without computers,
PlayStation, Nintendo, X-box or 270 digital cable stations.
I must be repre! ssing that memory as I try to rationalize through the denial of t he dangers could have befallen us as we trekked off each day about a mile down the road to some guy's vacant 20, built forts out of branches and pieces of plywood, made trails, and fought over who got to be the Lone Ranger. What was that property owner thinking, letting us play on that lot? He should have been locked up for not putting up a fence around the property, complete with a self-closing gate and an infrared intruder alarm.
Oh yeah... and where was the Benadryl and sterilization kit when I got that bee sting? I could have been killed!
We played king of the hill on piles of gravel left on vacant construction sites and when we got hurt, Mom pulled out the 48 cent bottle of Mercurochrome and then we got our butt spanked. Now it's a trip to the emergency room, followed by a 10-day dose of a $49 bottle of antibiotics and then Mom calls the attorney to sue the contractor for leaving a hor! ribly vicious pile of gravel where it was such a threat.
We didn't act up at the neighbor's house either because if we did, we got our butt spanked (physical abuse) here too, and then we got butt spanked again when we got home.
Mom invited the door to door salesman inside for coffee, kids choked down the dust from the gravel driveway while playing with Tonka trucks (Remember why Tonka trucks were made tough... it wasn't so that they could take the rough Berber in the family room), and Dad drove a car with leaded gas.
Our music had to be left inside when we went out to play and I am sure that I nearly exhausted my imagination a couple of times when we went on two week vacations. I should probably sue the folks now for the danger they put us in when we all slept in campgrounds in the family tent.
Summers were spent behind the push lawnmower and I didn't even know that mowers came with motors until I was 13 and we got one without an automatic blade-stop or an auto-drive.
How sick were my parents? Of course my parents weren't the only psychos. I recall Donny Reynolds from next door coming over and doing his tricks on the front stoop just before he fell off. Little did his Mom know that she could have owned our house. Instead she picked him up and swatted him for being such a goof. It was a neighborhood run amuck.
To top it off, not a single person I knew had ever been told that they were from a dysfunctional family. How could we possibly have known that? We needed to get into group therapy and anger management classes?
We were obviously so duped by so many societal ills, that we didn't even notice that the entire country wasn't taking Prozac! How did we survive?
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Subject: Only in America
1. Only in America.......can a pizza get to
your house faster than an ambulance.
2. Only in America.......are there
handicap parking places in front of a
skating rink.
3. Only in America.....do drugstores
make the sick walk all the way to the
back of the store to get their
prescriptions while healthy people can buy
cigarettes at the front.
4. Only in America.......do people order
double cheeseburgers, large fries,
and a diet coke.
5. Only in America.......do banks leave
both doors open and then chain the
pens to the counters.
6. Only in America.......do we leave cars
worth thousands of dollars in the
driveway and put our useless junk in the
garage.
7. Only in America.......do we use
answering machines to screen calls and
then have call waiting so we won't miss a
call from someone we didn't want
to talk to in the first place.
8. Only in America.....do we buy hot dogs in packages
of ten and buns in packages of eight.
9. Only in America......do we use the
word 'politics' to describe the process so well:
'Poli' in Latin meaning 'many' and
'tics' meaning 'bloodsucking creatures'.
10. Only in America......do they have
drive-up ATM machines with Braille
lettering.
EVER WONDER
Why the sun lightens our hair, but
darkens our skin?
Why women can't put on mascara with their mouth
closed?
Why don't you ever see the headline
"Psychic Wins Lottery"?
Why is "abbreviated" such a long word?
Why is it that doctors call what they do
"practice"?
Why is it that to stop Windows 98, you
have to click on "Start"?
Why is lemon juice made with artificial
flavor, and dishwashing liquid made
with real lemons?
Why is the man who invests all your money called a
broker?
Why is the time of day with the slowest
traffic called rush hour?
Why isn't there mouse-flavored cat food?
When dog food is new and improved
tasting, who tests it?
Why didn't Noah swat those two
mosquitoes?
Why do they sterilize the needle for
lethal injections?
You know that indestructible black box
that is used on airplanes? Why don't
they make the whole plane out of that
stuff?!
Why don't sheep shrink when it rains?
Why are they called apartments when
they are all stuck together?
If con is the opposite of pro, is
Congress the opposite of progress?
If flying is so safe, why do they call
the airport the terminal?
Now that you've smiled at least once,
it's your turn to spread the stupidity and send this
to someone you want to bring a smile to (maybe even a
chuckle)....in other words, send it to everyone. We
all need to smile every once in a while.
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As some of you know one of my thoughts about Johnny's care not being all it should be was that I suspected that he was at least partly misdiagnosed or I should say under diagnosed. I always suspected that at least part of what was in his lungs was fungus. The only tests he had were Ct scans and exrays. There is no way for me to know the truth for sure. Any information I gain is strictly to ease some things I question.
I have seen several posts on this board about people who are or were dealing with fungus infection along with their cancer. My questions are: why was is suspected? What were the symptoms? How did they find it and how was it treated? Just one more attempt to ease my mind a little by knowing if my suspecions could be right. I always like to know as much as I can. This is important to my need for answers. I just want to know if I am possibly right.
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chalk one up for the red man!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Debbie
My mom died in 1985 from lung cancer. I lived 2500 miles from her. Something told me to go home and see my family. Now you would think I would know that sense she had lung cancer but the kicker is I didn't know she had lung cancer. She had told me that she had a lump. I asumed it was in her breast. She never told me any differently. She had radiation treatments and was told it was gone. There were no follow ups. I got here to California to see her and found her very different. She would fall asleep all of the time. Not long before she had passed out one day coming into the house through the garage. It was a very hot day so everyone assumed it was the heat. Her ankle was treated and nothing else done.
When I got here she seemed okay physically. Her attention wandered a bit and she would fall asleep. We took her to the doctor one day because she had made an appointment. She wasn't feeling right. It was then that I learned that she had lung cancer. Ten months after she had treatment. Later she ended up with pneumonia and was sent home with oxygen. Her mind started disappearing for hours. She was not the Mama I remembered. She had always been so strong. She worked hard all of her life. Now she was totaly dependant on my dad. She never had any pain. I was always thankful for that because my mom could not stand pain. I have no idea how she had 6 children at a time when they had none of the things they do today. I was the only one born in a hospital. I watched and saw her dignity going. I knew that she was dying. Still I was in denial. To make it shorter she kept getting worse and I had been here for 2 months. I had to get back to my family. The morning I left she was calling my name as I walked out the door. My husband told me that if I went back I would never leave. So I left with her calling me. To this day I can hear her voice calling my name.
We stopped in Reno for one night. Then went for breakfast. When we got back to our room the maid was leaving. She had been leaving a note to tell me that Mama had died that morning. We came back for her funeral and stayed for another week. I never had a sign that she was with me in all of the years sense her death. Then last year after Johnny died things started happening that I couldn't explain. I told myself that I was doing those things even when my heart told me it was Johnny. Like you I kept asking for proof. I kept getting more and more but still I question. Sense his death I have had hundreds of signs. In my heart I know it is Johnny but my rational mind tells me to not believe. I have learned that my mind tells me that because I am afraid that if I ever really believe totaly that it is Johnny the signs will stop. I don't want that to happen so I deny them and question myself.
I grieved for my Mama but I saw her suffer. No she didn't suffer pain but she suffered the loss of all that she had been. I know now that the cancer had probably gone to her brain but she was never tested nor treated for that. In it's way it was a blessing. Her mind hid the pain of the cancer. She never felt the pain. Because of what I saw with her I was almost relieved to see her not have to go through those things again. In her casket she looked like my mama again. Because of those things I was able to go on. I missed her but I had been so far away from her already that it was not a day to day thing. It made my grief no less just gave me more time to accept it. I finally did all of my grieving for her, my dad, my 3 brothers and Johnny's sister after Johnny died. I came to terms with their deaths but am still having a problem coming to terms with Johnny's.
One night a few months after Johnny died I was in terrible shape. I was trying to read a book when I smelled something. It lasted such a short time that I couldn't tell what it was. The next night it happened again. Still I didn't know. The third night it came to me and never left until I realized what I was smelling was cooked tomatoes. Mama worked in a canery for over forty years. So many times we sat in the parking lot waiting for her to get off work with the smell of those tomatoes going through the whole car and following us for a long time after we left there. After over 17 years I finally had the sign that my Mama was with me. She came to comfort me and no one will ever make me believe any different!
I still get signs from Johnny nearly every day and still I question. I will always question so maybe he will keep sending them to me. Our loved ones are with us. When we need them the most they are here but we have to be open to them. I never was until I lost Johnny and my need made me accept what I knew. Still I want more proof!!
Pet peeves...
in JUST FOR FUN
Posted
How about the telemarketers that answer you with "Oh don't you want to save money?" These are the ones that you tell that you don't want their damn credit card or magazine or whatever they are selling then they act like you are the stupid one!
How about the people that take a buggy so full that everything is falling out through the express line at the grocery store. Your standing there with a gallon of milk that is breaking your arm and that is all you have.
people that never call you on the phone but seem to know when you are in the bathroom and then remember that they need to tell you something.
then there are the ones who think it is so cute when their dog humps the leg of everyone who enters their house.
And of coarse there are the ones who go to a resturant just so they can spend an hour talking on their cell phone and make sure that everyone there knows the whole conversation because they know how to make their voice carry so they don't need a micraphone.
The best one of all is the person who calls you and when you answer the phone say"oh you're home". Now if they don't expect you to be home why are they calling? So your phone doesn't get lonely?