lilyjohn

I am so sorry for you and all of your family. I too pray that the end will be peaceful and free of pain for him. Remember tho we don't see it there is a reason for our suffering. In time we will know and better understand. It just seems unfair that some have to bare more than others but who are we to second guess God? Hold on to eachother and above all hold on to God. He is the only one who can make the grief bearable. I know he sent this wonderful place for me to share when I needed it so desperately. God be with you and your family. Lillian

OOPs too bad I don't get help with my typing. I intended to write "help with my needs" not "neets" Lillian

I have had the strangest day today. Last night was my last night at a job that I love but felt that I could not continue for now. Too hard both physically and emotionally for this time in my life. Sense my niece moved about a month ago I had struggled with the decision to follow her up north. Then I got really sick with that new flu and a stomache virus at the same time. I got scared being here alone with no one to call on. I felt that was my sign that it is time for me to move on. I will be leaving here on Tuesday to move to a small mountain town not far from Redding called French Gulch. I am looking forward to it but still I have been so aprahensive. It is hard to pick up and move again not knowing for sure what is waiting for me. I left home this morning with a list of things to do. It should have taken me all day but I got finished in just a few hours. Everything just seemed to go perfectly. I felt as if I had some one guiding me through the crowds and clearing the way for me. It was as if my needs were seen and then I was helped with them. While driving words started in my head. Those words just would not leave me alone. I did everything that I had to do but I did it with those words running through my mind constantly. In the past I have written poems and after they are finished I look at them and think "did those really come from me?" It is as if they are someone elses words and I am being used to get them down. I felt like the way was being cleared for me to get home and write this poem. I can't pretend to know why but thought I would share it with all of you. Maybe you can make sense of it. I hope this is not a sign that I am really losing it. At any rate much of my aprehention is gone. I am ready for the move now. I know it is a place of exteme natural beauty. A place that Johnny would feel at home as well as myself. I am hoping it is where I will be able to find a little peace and a direction for the rest of my life. Thanks for bearing with me. I know sometimes my words seem just too extreme. I just don't know how to control that part of myself. Lillian Fate Fate is no lady with soft gentle ways She's a teaser a temptress with the games that she plays She will give you a love filled with beauty so rare Then leave you alone with never a care She is jealous and angry bad to the core She gives you a little then offers more She never continues to add to your hope Just dashes your dreams and leaves you to cope But fate has a lesson she neets yet to learn God has the answer when to Him we do turn Life may be fickle and Fate may be cruel Love is eternal, in the end it does rule

Thank you Fay That is some of the best advice I have seen so far. Often the disease or drugs cause people to say terrible things to the ones they love. They don't mean it but sometimes they come out that way. It is important to remember that it is the disease you are angry and frustrated at not the one who is sick. Remember too that when someone with cancer stikes out it is because they feel the same anger and fear and frustration that you do. As for being the one your mother struck out at it all goes back to the old saying about hurting the ones you love. It is so very true. If we did not love the person their words couldn't cause so much pain. I really admire you for being so open with your thoughts. I know that you too must feel all of the things that we speak of. Bless you and hang in there the cure is there somewhere. I hope to see everyone on this board hold on until it is available. Happy holidays to you and yours. Lillian

Great news Adam. Your happiness shines. It is so plain how much you love your dad. He is lucky to have you. My best to all of you for the holidays. May the New Year renew your faith and give you much more hope. Lillian

Karen I just had to answer your post. I know what you are going through. It is just so hard when you are the only one there seven days a week and twenty four hours a day. You may or may not be able to find time for yourself. I wanted someone to come in for a few hours and stay with Johnny but he did not want that. He trusted me and me only. We argued about it. I don't know why I was so insistant. I could not stand to be away from him for evern a few minutes. Still I insisted. I will always believe it was because of what that was dong to US that he went into the hospital for help with the anxiety. An act that eventually led to his death. I have a lot to live with because of that. We shared everything until the anxiety started. The problem was we each knew what the other was thinking and feeling but to spare one another we never talked about our feelings openly. That was a very big mistake. If you have a problem with your husband or if you are just afraid tell him! Don't let cancer rob you of the sharing. It takes enough already. I didn't have to work outside of our home. Sense we were not married the state paid me to be his caregiver. Of coarse they paid only for 120 hours a month. What a laugh that is. One day Johnny made the remark that I was being paid to take care of him. Because I misunderstood what he meant it caused us a lot of problems and one of those major blowups that you speak of. What he was telling me and tried to explain to me tho I would not listen was that taking care of him was a job. He wanted me to be with him. He valued our time together more than anything else. I was spending so much time on doing for him that it was taking away from the time to just be with him. That is always a big mistake. Love needs companionship not a perfect house. I thought I was doing the right thing. I believed that I could do it all but I failed in the most important thing. Just being with him. Loving him and sharing my pain so he would have felt free to share his fears and emotional pain. One night after he had been very grouchy with me I walked outside for a while to cool off so I would not blow up at him. When I got back in he asked if I was mad at him. I told him "No" I was mad at the situation. He then asked if I didn't know that tho he was grouchy at times that it was not him but the disease or the anxiety or even the meds. I told him yes that I knew that. It was just that sometimes I wished I had someone to yell at and kick around to vent my anger and frustration about what was happening. A nurses aide told me that I should go to Good Will and buy an old doll. When ever I got angry of frustrated take it out on her even if it meant kicking screaming and tearing her arms off. It was a good idea but our situation got out of hand so fast that I never got to get that doll. Now it would take a train load and still I would live with the anger and frustration every day of my life. So please share with your husband. He knows what you are going through even if you don't talk about it. Maybe he feels that you don't trust him enough to share. Let him know that you do. As for the rest of it, the house cleaner is a good idea. Sometimes we have to let go a little. By the way I was using the work to run from the problems we had. I knew that I could handle and control the work so I chose that. I could not handle and control the fear and anxiety that BOTH Johnny and I lived with. I chose to concentrate on what I could handle. In the process we both lost a lot. I am no expert. I know only what I learned the hard way. I just hope some of what I say helps you. Just remember that tho you have many obligations the biggest one you have is to yourself. Be you and give you to your family and take from them what they give to you. Nothing else matters as much. God Bless you. I pray that things will get better and you never have to live with the regrets of precious time lost that you could have shared. Lillian

After Johnny died and I found myself so alone with no one to talk to I started writing a journal. I kept it up day after day for a while. Later I started just writing in it when I had some profound thought or something that just hurt so much that I needed to get it out. Johnny was always telling me that I have a way with words and need to write. He said our story was so special because of our seperation and the things that brought us together again that I should right our story. He said we were one in a million! I have been working on our story and hope someday to have it completed. It will not be the story that he wanted tho that will be a part of it. I am using some of those journal pages in our story. They tell so much of what I have gone through and probably a lot of what the rest of you have. I turn to those pages often in my writing and I add something every now and then. Today I wrote something about Christmas and I thought I might share it with all of you. I hope you can relate and in some way it may give all of you something to at least think about. God Bless and let me know what you think of my thoughts. Lillian December 4,2003 Christmas! What thoughts that word brings to me. I get in my car and they are playing Christmas music and I turn the radio off. For some reason I just can't stand to hear those songs. I think a lot of it has to do with the lack of joy in my heart right now but there are other reasons. Last year Christmas was so soon after Johhny died. The pain was so intense and I was so alone. I had planned on making it a very special Christmas for both of us. We had never been together for Christmas and he had never really had a Christmas like he had hoped for. I wanted to give him a good traditional dinner and gifts and above all love and hope. I wanted us to share in the joy of Christ's birth and the joy of just being together on such a special day. I had hoped to get his sons and their families together. I bought ornaments and decorations for the house. I had a dinner planned and could see us waking up on Christmas morning knowing that tho there were gifts under the tree we had already recieved the greatest gift of all. Eachother! When Christmas did come I was lost. I didn't know what to do with myself or the need to still give that special day to Johnny and myself. I watched Johnny Ray(Johnny's son) struggle with moving and trying to cope with Johnny's death and the birth of his new son. They had no time or energy to spend on Christmas or Christmas dinner. My answer was to cook the meal I had planned for Johnny and take it to them. It would be my gift not only to all of them but especially to my Johnny. I did that and felt good about it. It was still a cold and empty day for me in so many ways but the spirit of giving took over. Once again I knew what the real meaning of Christmas is. Over the years I watched and became more disappointed with each Christmas season. I had more to give in gifts for my family but I felt that so much had been lost. What had once been a time of giving of ourselves had become a time of stress and money. Everything became so commercial. Decorations and Christmas music started far too soon simply because the stores wanted more time to make money from it. The time when everyone would say "Have a merry Christmas" was replaced with people getting angry and frustrated over the price or the crowds. You were and are more likely to hear an argument in a store than to hear those special words that should bring joy to someones heart. The price of a gift has become more important than the love behind giving it. People buy gifts now out of a sense of obligation, not because they want to give a part of themselves. As the years passed I saw myself becoming more wraped up in the new meaning of Christmas. It was too hard to keep it from happening so I just went along with the rest of the world. I am not looking forward to Christmas this year. I know how difficult it will be with Johnny gone and my family so far away. Still I hope that I can once again find the real meaning of Christmas. I want to remember that Christmas is the real day of Thanksgiving. It is the day that we should lift our hearts and thank God for all that he has given us. It is the day that we should realize that Christ came here to give us all a way to get to heaven and closer to God when he died for our sins. It is a time when I want to say "thank you " for the many gifts that I have been given. Not the ones with price tags that read in dollars but the ones with price tags that read in love and yes even pain. I know that I will have a part of me that will live with this deep sorrow that fills so much of my being but I am hoping I will find a sense of peace with myself and my life. I am hoping that I will be able to see the joy of the most precious gifts that I have been given. My family, my love for them and theirs for me and the precious few months that I had with Johnny. The joy of knowing that he loved me and accepted me for who I am. I know too that my God does the same. I know that he sees my mistakes and my flaws but he too sees my value as a person and loves me despite the many things that I have still to learn. This Christmas may be a somber one but I hope it will bring me closer to being the person that I need to be. I pray that it will show me that my purpose in life is to be who and what I am and point out the direction that I need to go from here. Most of all I hope that when I tell someone 'Merry Christmas " it will come from my heart not just my mouth. There is so much uncertaintanty in my life right now. Still there is one thing that I do not doubt. I am loved! Loved by God and by so many others. My family has gotten smaller over the years with so many losses but it has grown too. I have my children and their families and now I have all of Johnny's family too. They are now my family. They have all most all welcomed me with open arms. Just one more gift I have to thank my Johnny for. I know you are near my love even tho I do not see you. I feel you hold me at night when I am so alone otherwise. I know that you lift me up when I start to stumble and feel that I can't go on. I know that you and all of my loved ones who have gone on like you have are near. I know that when I feel so alone at times God sees and sends you to me. What gift could be greater than that?

Hi Ann I just read your post and I have some things to share with you. I know how much you dread the anivrsary of your Dennis's death. As most of you know just 2 days ago I lived throught that nightmare.. In many ways it was so much harder than it was when Johhny died. At that time I was still in shock and somehow the shock helped me through those first horrible and lonely days and Oh God the nights. How I ached to turn off the pain. Still it all seemed so unreal. Now a year later as I was reliving every second and every word I had to do it through the eyes of reality. That really hit hard to face the fact that this is not a nightmare that I can awaken from but one that I will live with for the rest of my life.. The only consolation that I can give you is to say that even tho it has been so recent and other things have happened so quickly that add to my sense of loss and hopelessness that I am starting to learn to cope. It is not something that stays with me. It comes only seconds at a time right now but I have to believe that in time those seconds will turn into minutes and eventually days or weeks. I doubt the pain will ever go away but sometimes the pain gives us something to hold on to. In my case Johnny gave me a new life. Not just because we lived together and shared so much but because he loved me as me. He let me know that just being me is important. He let me be me and made me proud of who I am. That is a very special gift. Because of that I have to go one somehow and use the life he gave me to it's fullest. I know there are times when I will still fall into that pit of sorrow that so overwhelms me. I know too that there will be days when I just want to crawl into bed, pull the covers up and drown in the memories of a time that was so good and so full of love. Memories are strange things. Sometimes to good ones hurt as much or more than the bad ones. Still I have to believe that each memory is a precious gift. Without them what would I have. My point is that the aniversary dates tho very hard seem to take us over a thresh hold of some kind. We start living with reality but know too that our dreams from the past are gifts to be treasured not feared. I have heard that God never gives us more to handle than we can take. Sometimes it is very hard to believe that when we see only pain that wants to consume us. Still I have come to see the aniversary dates as a gift that takes us from the impossible nightmare to the reality that is our lives. I think once we have gone through those dates that hurt so much we will start to see the pain in a different way. That does not mean that it hurts less. Only that it is a milestone that we have lived through so we know that we can do it. A week ago it seemed impossible that I would live through those days. Now they are behind me. There are more to come but I am hoping once I get through tomorrow(the aniversary of his cremation) and Saturday (the aniversary of his memorial service) those dates will no longer frighten me. My thoughts and prayers will be with you on December 15th. I wish I could be there to hold your hand and give you a hug. To tell the truth tho I doubt that would do much good. I could have been in a room with a thousand people and eachone holding me for a while but I would have still had to face the date and the reality alone. The only one who truly knew what was and is in my heart is Johnny. I know that tho I can't see him and the signs that I used to get that told me he is near are less often, he is still with me. I believe that with all of my heart. I know that he held me that night and helped me through it. May your Dennis hold you and comfort you. Life is cruel but life is not the end only a new beginning. That is one thing that I have to believe! Without it I see no purpose for life or death. May God Bless you and all of us who face such dates and the holiday season that has turned joy into heartache. Lillian

Hi everyone I really need someones good news right now. I would like to think everyone who replied to my message night before last. I was really having a hard time dealing with the first aniversary of Johnny's death. By last night I had pretty well got myself together. I feel that Johnny gave me so much that I have to find a way to use what he gave to me. I need to live with the pain and without him but I need to LIVE! That is the only real way to honor the new life that his love gave me.. I just wasn't counting on any more bad news. When it rains it pours! How true that is. Last night Johnny's niece told me that her mom had a stroke. She has her hands full already taking care of her dad(Johnny's brother) who had a heartattack in 1990 and suffered severe brain damage. He requires full time care. I am still waiting to hear about the test results to know how bad it is. When I got to work today I learned that one of the ladies I took care of for a while passed away this morning at 1am. She had a fall about 2 months ago and broke her hip and just kept going down hill after that. She had Alzheimers. Not the later stages but still she had a lot of problems. Everynight when she was on my assignment she would give me a goodnight hug when I put her to bed. She was very special to me. Then tonight while I was on my lunch break I learned that an ambulance had been called to our Alzhiemers wing. Another lady that I took care of was sent there just two weeks ago when she got too bad to live alone in her apartment Tonight they found her sleeping and could not wake her up. She had no pulse. Finally they got her to wake up and she was taken to the hospital. I will learn tomorrow how she is. I can still see her with two pairs of pants on and sometimes her clothes inside out. She wore dresses that were like the styles thirty or forty years ago. She too would hug me good night. I was going to go see her but just couldn't make myself go there right now. I have so many emotions to deal with already. Now I won't get to tell her goodbye. My last day to work before I move will be Friday.. I read someones post saying that you just never know what will happen. I think that is so right. None of the people I mention here have cancer. The two ladies in the place where I work are in their ninties. Still I let myself become close to them.. I just couldn't help it. That is one disease that is just as cruel as cancer. It just robs a person of life before it takes their life. I am hoping to change my line of work when I get to where I am moving to. I have gotten a lot from the people I care for and I hope that I have given something to them. I will always see them as the forgotten ones because so many are. It is just that for now at least it has become too hard of a job for me. Physically it is hard but emotionally it breaks my already broken heart over and over. Lillian One of my favorite quotes: "No man is an island entire of itself but each is a part of the continent, a piece of the main. If a clod be washed away by the sea Europe is the less even as if a promitary were or a manor of thy friends or of thine own. Every mans death deminishes me because I am envolved in mankind. Send not to know for whom the bell tolls it tolls for thee." John Donne

I had to read your message twice to make sure your dad does not live in Washington. His doctor was about the same as you describe your dad's to be. Even had a pulmonologist in the same building. Unfortuanately Johnny never saw him. I give the same information as everyone else keep records!! I also advise that you get copies of all test results. Remember if they know that you are watching and recording everything they will be less likely to do something not to his advantage. I hate saying that but I have learned the hard way that not all doctors are there to help the patient. There are many who care little for a live or how much they cause a person to suffer either physically or emotionaly and sometimes both. Stay close to you dad and watch everything that goes on. If you have to switch doctors. If you find his treatment to be too bad file a complaint. Do it with the evidence that you gather (records you keep) and do it while your dad is able to be a witness. I found out the hard way what you see means little when you file a complaint. They just as soon call you a liar as look at you. I am not talking about the doctors either. I mean the medical board! I have already told them that their sole purpose for being there is not to look out for the patients best interest but to cover the asses of the doctors who screw up! Pardon my language but the truth is the truth. Act now before it is too late. Life is precious. Fight for it with all of your strength and when you think your strength is gone reach down further inside of yourself and find more. My best wishes and prayers are with you and your dad. Lillian

You will be in my thoughts. So many of us here are sisters in pain. I won't tell you not to feel like you do. It has been a year yesterday and still I feel like any minute my Johnny will walk into the room. It is a nightmare that I keep waiting to wake up from. I know that you and Katie and a lot of us here feel the same way.. Too bad we are not close enough to hold eachother at those times. Sense we are not I will hold all of you in my thoughts and in my heart. Maybe some day we can laugh again. Lillian ((((hugs))))

Adam Is your dad by any chance being given Ativan? That does strange things to some people. I saw Johnny go through a night similar to what you discribe after he took just one extra milgram of Ativan. That was when he first started with the anxiety and was trying to get it settled down. Instead we had to live through one of the worst nights of his illness up to that time. Later they gave him 4 miligrams in his IV and the reaction was ten times worse. Research has taught me that Ativan does that to quite a few people. It is very common and most of the time dose related. Maybe if he is taking Ativan they can switch him to Xanax. It works better in some cases and does not seem to cause the problem as much. I know how frightening it can be to watch that. Hang in there and try to find out the cause. If it is medication there is a way to change it. Just insist on knowing what he is given then look up the medications on the net. You will be surprised how much you can learn that way. My best to you and I am hoping it is the meds and will be corrected soon. Lillian

Hi Greg Let us know if what you experienced is more of the reaction to Cistplatin. I know that like Carboplatin it is Platinum based. No one told us that Platinum builds up in your body and sooner or later causes problems until After Johnny ended up in the hospital. His temperature climbed to 104. Really high considering normal for him was 97. His blood pressure almost bottomed out too. The next day he was fine. No more problems until later when the anxiety started. I have sometimes wondered tho if that reaction could not have helped trigger part of the anxiety. Hang in there and be tough like you sound. You may have been there for Thanksgiving but Christmas is still ahead. Believe that you will be home by then and all will be well. You are just one year older than my youngest son. I guess I am a lot more like some of the people I critisize for having set views about lung cancer. I tend to think of it as a disease that attacks us older people. Shame on me when I see so many here that prove me wrong. Hurry up and get better. Prove all of the doubters wrong. One more shake up in their beliefs can't hurt!!! Lillian

I just need someone right now. I am so alone and so deperate. I handled the day okay until a short while ago. I was able to keep the memories from overwhelming me. But now as what was the last few hours of Johnny's life last year are upon me I just can't keep it under control. There is no one to talk to. No one who understands. My children tho loving are far away and they didn't know Johnny and can't concieve of the love we shared. His children just want to forget and go on. My niece is reachable by phone but talking to her is impossible. She lost her husband almost four years ago and still has problems talking about it. Anything I say about Johnny upsets her and she is bi polar. Johnny's niece has been my rock but she is taking care of her dad full time and dealing with her mom's medical problems too. So there is no one. I am as alone tonight as I was this time last year. I am still seeing the same images and still hearing him call me time and time again. Everything that happened that day is tormenting me. That morning he got so upset because his hands would jerk and he couldn't hold onto anything. I have learned sense then that it is called Myoclonus and is caused by morphine and some other drugs. While I was gone in search of something to eat his tray was brought to him. When I returned to his room the sitter informed me that she had ordered another tray for him because he had spilt his cereal all over himself and the bed. She said it with such disgust. When I got to him he had tears in his eyes and he said "I'm sorry mama my hand jerked. I didn't mean to spill it>" My heart was breaking for the pain that caused him. I told him that he had nothing to be sorry for I told him that I understood. When the new tray came I mixed his cereal with milk and fed it to him with a straw. He ate and drank everything on both trays. He was so hungry and so determined to make himself well again. Why did they have to torment him? That damn doctor that came to his room that morning made no attempt to help him. He just tried again to talk him into signing a DNR. Then he made him think that he would have a machine breathe for him the rest of his life and have to live with those jerking movements. They tried everything to scare him into doing what they wanted and still he refused. Because he wouldn't co-operate they just made sure that he stayed without monitors so long that he would die and they would not have to honor his wishes. I was there. I saw the pain that decision caused him. I saw him struggle with seeing himself like that and seeing himself die if he did what they wanted. I held his hand and I was there. No one else just me! I watched him toss and turn and try to sit up and then lay down again when the sitter pushed him back. I heard him call me over and over again. I watched when the nurse tried to put pills in his mouth and he pushed her hand away telling her that he would not take it unless she let him do it himself. I heard him question her because he was afraid that she was giving him Ativan again or codiene. Neither of us knew at the time that codiene comes from morphine. We never questioned when they gave him that garbage without him asking for it. They just kept saying it was to calm him down. They had him so drugged up with that and the Vicodin but still he knew enough to question them. Still he had the strength and determination to control his hand long enough to take my hand to his lips and kiss it. He wanted to fight for his life and he wanted to stay with me. He was happy for once in his life. He didn't want to die. He just wanted a chance and they robbed us both. I sit here and watch the clock and see the time and I know exactly what was happening at this time last year. I see it all and it is tormenting me. I can't stop the pictures and I can't stop hearing him call me. I have tried everything to get someone to at least look at what they did to him but no one will help. I have went through the channels with the medical board and I have written to members of congress and the media. All anyone is interested in right now is war. Just one good man who was tormented and died too soon means nothing to anyone. All they care about is war and the coverage they can get. I can't get his kids to help. They have questions too but they were not there. They didn't live through the horors that I did. They didn't watch him struggle to live and they didn't see him die. When they found out that the attorneys don't want to touch it because he had cancer they just let it go. I offered to pay for his medical records but they never would get them.. I have no rights because we were not married and if I did have any as his domestic partner they were swept away because I was his legal caregiver and the state was paying me. There is no where I can turn for justice and no where I can get the anwers to the questions that haunt me. Everyone thinks that because it has been a year I should "be over it". My God it is my life they are talking about. How can I get over that? How can I stop those pictures that play over and over? Who can I turn to? I have so much evidence if only someone would take the time to look. I am so sorry for going on so much. I just don't have anywhere else to turn right now and I feel like I am losing control. I have to be strong because I have to make a living and a life for myself but sometime it is just so hard to be strong when I hurt so much. When I need my Johnny so much. Lillian

One of the biggest mistakes anyone can make is assuming things! Assumptions can be deadly. When Johnny first saw a doctor he was living alone on a low income. The doctor was incomptant and he assummed that because Johnny was older and on a low income that no one would notice or care what happened to him. When his first CAT scan came back showing the posibility of cancer along with other things it was assummed that what was in his lungs was all cancer dispite evidence that it could be something else. They assummed that they could do what they wanted and get away with it once the word cancer was mentioned.. Once the anxiety started they assummed it was the cancer not the way they were treating him. Finally they assummed that his quality of life was too bad for them to waste the effort on saving him. That was their assumptions now I will tell you mine. I assummed that all doctors were there to work toward saving lives and seeing that a person suffered as little as possible. Before he was diagnosed I asked if some of what was in his lungs could be sarcoids or fungus. I was told flat out no before any tests were done. I assummed that the doctors knew what they were talking about. When they said he could not have radiation because he was stage IV and it would burn him too bad I assummed that they knew better than I did. I had no idea that they were only capable of giving chemo in their clinic. I assummed that they would do all they could to help him because that was their business. I assummed that no doctor or nurse would ever do anything to deliberately take a persons life. I also assummed that the medical board would quickly step in and correct any wrong doing because they are there for the publics best interest. In the end everyone assummed that because they said that he died of cancer that no one would question them or their actions. Everyone of their assumptions and mine were WRONG. Most nurses work under staffed and under paid. They see only the records that the doctors choose for them to see. If they feel that something is not right in most cases they are afraid to question it. They don't want a reputation of not following orders. Often they assume that they are helping a patient even when they know that what they are doing is deadly. They believe that because the doctors tell them so!! There was a time when medicine was an honorable profession. When it had heart. That was before corporations became in charge. That was before medical practice and pharmysuticals(spelling) became the largest industry in the world. Now it is money and power and social standing that come first NOT people. Yes there are still a few good doctors and nurses but in most cases their hands are tied when it comes to really working for the patients. The most abused medication in the world is Vicodin. Doctors hand that out like giving candy at Halloween. Vicodin, Oxycodone and Oxycontin are known on the streets as the poor man's herion!!! There are other drugs that work as well and in some cases even better for pain yet they are seldon given. Delaudid is 10 times as strong as morphine in the treatment of pain without most of the terrible side effects. It is not used except in extreme and acute cases of pain mostly because the cost is so high. There is a standard group of medications that are always perscribed no matter what the illness and in some cases when there is really no illness. I know this because I see it everyday. That is one reason why I have chose to leave my job and move on. Everytime I see someone given Vicodin, Morphine or Ativan I cringe. I know what those drugs can do! I see them given out time after time routinely. You are very young still Adam and you are being forced to grow up far too fast by circumstances. I really feel for you and can sense your pain and frustration. I tell you all of the things I have learned because I don't want you to feel ashamed for asking questions and above all I don't want you to end up questioning yourself if something goes wrong. Try to get your other family members to take more of the responsibilty for your dad. See if you can find a way to have one of you with him at all times. Above all if you see something that you think is wrong or could be harmfull ask questions and get an explaination BEFORE it is done not after. I'm sure that I seem cynical but believe me I learned to be the hard way. I too didn't want to hurt anyones feelings. I didn't want people to think that I was hard to get along with and I didn't want to have them take out my behavior on Johnny. In the end those things did nothing for me or for him. You can make a difference in your dad'd treatment and peace of mind. You just have to remember you are there for him. Let your love for him guide you and leave the nurses and doctors take care of their own problems. you have enough of your own. God Bless you and help you. Peace of mind is a valuable thing keep it. Don't let them rob you of your dad or your peace of mind. Get those answers and demand that he be treated the way you think he should be. Your dad may live weeks, months or years. No matter how long he has you have a very long time to live with yourself. I don't want to see you live with the nightmare of self doubt that I do. Lillian

Adam No you are not alone. It is your job to ask questions and to demand answers!!!!!!!!! Don't fall into the trap that I did. You are not there to be nice you are there for your dad! Nurses do make mistakes and some of them are very caring but there are others that will do anything a doctor tells them even if they know it is wrong. I suggest you get a small tape recorder and ask questions, get answers and make sure you have names and the names of medications. Let them know what you are doing. Yoour dad will be much safer then. Best of luck. And remember good nurses won't be offended just the ones you have to worry about will. Lillian

Adam No you are not alone. It is your job to ask questions and to demand answers!!!!!!!!! Don't fall into the trap that I did. You are not there to be nice you are there for your dad! Nurses do make mistakes and some of them are very caring but there are others that will do anything a doctor tells them even if they know it is wrong. I suggest you get a small tape recorder and ask questions, get answers and make sure you have names and the names of medications. Let them know what you are doing. Yoour dad will be much safer then. Best of luck. And remember good nurses won't be offended just the ones you have to worry about will. Lillian

Peggy I would love to chat with you. Let me know what time zone you are in and maybe we can get set up to talk. I have a great need to share and I feel that you do too. There is so much we could talk about and maybe help eachother. I have to go to work now but hope to hear from you soon. You can email me at lild@peoplepc and we can try to get a chat set up. Lillian

November 29th I am trying to find something to think about so the date does not continue to torment me. I don't want to remember that this date last year was the beginning of the end of my beautiful life with my Johnny. I don't want to see the things that happened to him and to us. I don't want to see his tears of shame for something that he could not help and above all I don't want to see the fear in his eyes and know the fear that was in both of our hearts.. I have been thinking about love and how I would discribe it. Love is sharing someones thoughts and feelings and respecting those things and knowing it is returned. Love is taking a person as they are and not wanting to change them or make them over. Love is acceptance of flaws and not only accepting but having pride in the person because you know the flaws are a part of them. Love is wanting to lift someone up when they are low and love is wanting to lift someone higher when they are high. Love is a touch or a look that needs no words and love is the joy of just being. Being loved is the most wonderful thing but being able to love totaly and unconditonally is the most precious of gifts. Love is just knowing without words and love is words that mean one thing to others but have special meaning between two people who love. Love is silly little pet names and love is tears and hope and pain. Love is what life is all about. Love is the most powerful force in the universe and beyond. Love is life, hope and dreams. Love is the eternal force and I believe that God is love. Is it any wonder that our pain is so deep when we know and have experienced all of these things and now don't know where to focus that love that joy that hope? Hold on to the ones you love with all of your might and all of your love. Remember to be patient and remember too that sometimes it is alright to be impatient just so you know it is the disease that you are impatient with or angry at not the one who you love. I have been truly blessed to have known a love so deep and have it returned so totaly but I know that all things have a price. The price I have paid has been dear but the love I have known has been priceless. Because of that I know that I have to grieve and I know that the pain will never really go away. I know too that tho I will go on to live a life different than I had hoped for I will live with the knowledge of that love and hope that in time it will give me the strength and courage I need to become a part of the world again. I want to be someone that my Johnny would be proud of and I want to live because I know that he loved me enough to want that for me. I know that I am rambling but I am trying to explain and encourage myself as well as anyone else who feels like I do. I am trying to ignor the date and I am trying to get the courage to go to work and face the problems of the other forgotten ones. The ones who know like Johnny did what indifference and selfishness can do. I thank you for your replys. Sometime I need a hug even if it is long distance! To all of you I wish you hope and peace but above all I wish you love. Lillian

My God will the pain never end? I can be doing something and think that for a while I am a normal functioning person. Then like a freight train out of nowhere the memories hit me and I feel myself falling apart. How do I get past these aniversary days? These days that last year were the final days of my Johnny's life. How do I rid myself of the fear and anger and pain? I don't want to be the kind of person who hates and seeks revenge but still I find myself wishing that the ones who let Johnny suffer needlessly would have to go through the same thing. I want them to pay for what they did and I want them to know why. His life was so precious to me but to them he was just another case another face among thousands. They didn't even know him but they decided that his quality of life was not worth saving. How could they do that? How do they live with themselves? I have this overwhelming feeling that I should be able to go back and see the things that I missed. I should be able to go back and stop the drugs and demand his wishes be respected and acted on. I feel like I am living a nightmare that never ends and the answer is there somewhere. There has to be a way to go back and relive these days last year and change the outcome. Somehow there has to be a way to take the pain away. I have to find a way to laugh again instead of cry. But I don't know how. I just don't know how to feel anything except pain and this anger that is consuming me. How can people who are supposed to care, people who are supposed to heal and provide comfort do the things they did? How do they live with themselves knowing that they took away not only someones chance to fight for his life but his dignity and his peace of mind? My God when will the memories of those last days and hours stop tormenting me every minute of my life? I am so sorry to put this on all of you. I know you have so much of your own to deal with especially this time of year. I am just so alone and so lost I am tired of hurting and I am tired of the anger but I don't know how to stop it. I don't know how to find peace and above all I just don't know how to cope. I turn to God and I know he is watching over me. I know somewhere my Johnny is watching over me too, but my arms are so empty and the nights are so long. Lillian

Please take nothing for granted and don't let anyone else do that. Research everything and above all get copies of those test results. I can not imagine a doctor saying something like that but then too I have seen so many things in the past year and a half that I know some are not as ethical as we would hope and think. As for the symptoms don't borrow trouble. There are so many things that have the same symptoms. There are a number of fungi and there is also Sarciadosis and Cystic Fibrosis. Sometimes just a severe infection can cause the same symptoms.. In short it takes a lot of testing to know for sure what is going on. Make sure that all of the tests required are done. Never let any one get away with taking shortcuts. Never let anyone just assume. When they tell you something demand reasons and the information that backs up what they say. The more you know the more you are able to face the beast or anything else that you may have to deal with. I pray that it is not cancer and that whatever it is is healed soon. Enough people have to fight this monster already. This is one area where there is no comfort or satisfaction knowing that you are not alone. The more company you have the more suffering there is for someone else. Stay positive and above all never give up hope. It is the one thing that everyone needs to fight. Without it you are drifting on a sea that can swallow you before you know what is happening. God Bless you for caring. I am touched to see so many daughters-in- law concerned and willing to help there family. I remember my Johnny's daughter-in-law and how much she loved him. She was not any real help but her love was there and he knew it. She too knows how much we have lost. I hope that you never have to learn that at least not for many many years. My best to you. Lillian

Cathy Everyone is telling you like it is. I have had many losses in my life. With each one it does not get easier but harder. Memories are precious to me even the bad ones. In 1974 I lost my youngest brother at the age of 37. The day after Christmas 1974 Johnny's sister(my best friend was found beaten to death on a military base north of San Francisco. In October 1978 My oldest brother died at the age of 49 from a heartattack. In March 1985 another brother died of a heartattack at the age of 50. Just a few short months later on October 12th my mother the most gentle hard working person I have ever known died of lung cancer. Then on January 12,1994 my dad died less than two months before his 86th birthday. I lived far away from them and didn't see them often. In many ways I never really confronted my pain at their loss. Then last year when I went through a very painfull divorce and came back home to California I had to start facing all of the deaths in my life. I had to finally realize that they are no longer here but I know too they are always a part of my life. I think it was because of that along with the fact that Johnny and I had been apart for so many years and finally found eachother that makes my pain now so much more intense. I have so many memories of my childhood both good and bad and I have learned to cherish them all. Johnny's death was so sudden and so unexpected that we had little time to make new memories so the ones that I do have are so very important to me. Somehow I feel like they are all I have now and even the bad memories of the last few days are welcome. I know in my heart that in time it will get better. I have been there so many times that I have learned that. Knowing does not stop the pain or the questions. It has always been talking about the people I love that has helped me cope but with Johnny's death I have so few people to share with. I can't expect my children to understand. They only know that I was with him not their dad. Kids even grown ones have selective memory. Last year right after Johnny's death I joined an online berievement group. There was a poem there that says so much. Last night while feeling very down facing the aniversaries of those terrible last days I decided to take a chance and send that poem to my daughter.. I have not heard back from her. It explains our situation very well and probably what so many of us are facing from our family and friends. Maybe you too can use it as a gentle reminder. My best to you and all of you this holiday season. May our loved ones let us know they are near and our hearts learn once again how to feel more than pain. Lillian The Elephant in the Room. By: Terry Kettering There's an elephant in the room. It is large and squatting, so it is hard to get around it. Yet we sqeeze by with, "How are you?" and, "I'm fine"..... And a thousand other forms of trivial chatter. We talk about the weather. We talk about work. We talk about everything else--except the elephant in the room. There's an elephant in the room. We all know it is there. We are thinking about the elephant as we talk together. It is constantly on our minds. For, you see, it is a very big elephant. It has hurt us all. But we do not talk about the elephant in the room. Oh, please, say her name. Oh, please say her name again. Oh, please, let's talk about the elephant in the room. For if we talk about her death, Perhaps we can talk about her life. Can I say "Barbara" to you and not have you look away? For if I cannot, then you are leaving me Alone....... In a room......... With an elephant. Posts: 35 | From: NYC | Registered: Fri December 27 2002

Hi Betina I have to respond to your post tho I am not sure if it is more for you or myself. I too am alone with no friends or family. This week I face all of the aniversary dates of Johnny's last days. I face them alone. I asked to work yesterday for Thanksgiving. I needed to not be alone yet while there I found myself shying away from people. I needed to be around others but I needed to be alone too.. I will tell you that the question of another life is one that is constantly on my mind. I have had so many experiences sense Johnny died that tell me that he is with me yet I need that so much that I question if it is real or just in my mind. I question even tho others have witnessed these things too. I have to believe because without that what is there? I need to know that there is a purpose for my suffering. I have to believe that in time it will end and I will once more know the joy of being with my Johnny. You see we were not as fortunate as so many of you were. We had only 5 months together even tho we had met and loved 44 years ago. A forced seperation took our lives in different directions. We each married and had families. I am so thankful for my children and grandchildren but at the same time I have so many regrets about the years we spent apart. His marriage as well as mine gave us something but they both took so much away from us. It was a miracle that in the last years of his life we found eachother again. That happened because of a prayer he said and a dream that I had.... Our love survived all of those years of seperation. I have to see this time now as another seperation and in time we will be together again. If not what is the purpose of life or even death? I have so much pain and anger but I know that I really need that for now. Without it I have no emotions. Everything else has dried up inside of me. I know Johnny would want me to find peace and even a little happiness because I know how much he loved me. I know too that he was so much like me that he would still cherish my hurt because he knows it is a sign of how much I love him. I moved here to be close to my niece last May but now she has moved and I find myself alone at this one of the most difficult times in my life. Soon I will move north and join her. She has a place waiting for me. It is in the mountains and close to the nature that both Johnny and I felt so much a part of. I am hoping that by going there I will find a way to make peace with myself and my God. I have to have faith but I am afraid to trust. I had faith once and believed my prayers were being answered and I let my guard down. Johnny died and I felt that my faith betrayed me. A part of me still feels that way but I have to find a way to let that go. I have to believe in time we will be together again. Not just for 5 months again but for time and all eternity. I was fortunate that I did not have to watch Johnny suffer from the cancer like so many of you have. Instead I had to watch him suffer from the knowledge that he had cancer and the fear that went with that knowledge when his doctors insisted on taking hope away from him and doing nothing to help him cope. I also had to watch him suffer the effects of the medication that they gave him the last days of his life. Medication that killed him and took away his chance to fight the beast known as cancer. Maybe in some ways I am lucky and he was too but in many others we were cheated. Cheated by cancer but above all cheated by the doctors and attitude. We were cheated by life but I have to believe in time we will have the last laugh. Time could not keep us apart. I have to know that death can do no more than time. I say to you it is the hardest battle you will ever fight in your life. I know because I am there and fight it everyday of my life. I have a destiny and you do too. What that destiny is we do not know but we have to go on and let life show us. If not what is the purpose of all of the suffering and pain we have had to endure? We share so much and have so much in common. My email address is lild@peoplepc.com Please feel free to write to me. I would love to hear from you and maybe we can be of help to eachother. There has to be something positive to come from all of our pain. God Bless you. Lillian

I know that I am replying to a post that is a couple of months old so I am not sure that anyone will read it. I do believe there is life after death of the body. At first I thought it was just because I needed to believe so badly. Sometimes still when the pain gets so bad I find myself questioning the experiences that I have been fortunate enough to have. I have always believed in God. How could anyone look at a child or a tree or a mountain and believe anything else. Surely no one believes that man could create such wonders! After Johnny died I went home to spend the night in our apartment alone. It was one of the hardest things I had ever done but I knew that if I didn't do it I would never set foot there again. He was everywhere but he was not there. I was in so much pain that I thought I would lose my mind. I prayed and I asked God and I begged Johnny to let me know that he is alright, not sick or afraid anymore. I thought my heart would burst with the pain and the need.. Wanting to feel close to him I took out his wallet and while looking for the lock of hair I had sent him earlier I happend to look behind a picture he had of me. When we had first gotten back in contact with each other after over 40 years I had written a poem and sent it to him. I had forgotten that he told me he loved it so much that he would always carry it with him. When I took it out to read it it was as if Johnny were there giving me my own words telling me that he will always be with me. the next morning I looked for the poem but it was gone. I searched everywhere looking for it even in the file cabinet and the garbage but it was no where to be found. On New Years eve as I was putting some of his personal things away I again got to the point that I thought I would go mad with grief and pain. I thought that if I looked at his old hospital and docter statements from medicare that I might see how much money they were losing by accepting only what medicare paid. I thought that might explain why they were so eager to let him die or I should say help him die.Anyway there in the middle of those papers that I had not been in in months was the poem open and faced up. Once again my own words telling me that he will always be with me. After that day so many things happened when I needed them the most. The night I went to his son's house and saw his remains in that damn cardboard box instead of a urn I thought I had taken all that I could. On the way home on my car radio for the first time I heard the song " I believe" What could be more of a sign then that? So many more things but it would take hours for me to write them and you would probably all think I have lost my mind. I will just say that like in the words of that song "every now and then as soft as breath upon my skin I feel him come back again and I believe"!!!!!!!!!!!! The poem I wrote for Johnny and found in his wallet and papers when I needed it so desperately. I'll Be There In the early hours of morning as nature for a new day does prepare Close your eyes and think of me and I'll be there When you walk beside the sea and the wind blows on your face Think of the one who loves you in a far off distant place When Spring begins in earnest all the world to renew I'll share in the beauty as I walk beside you In the warm soft days of summer as gentle breezes softly blow Think of all the love we shared in a time so long ago In the lazy days of autum with their colors red and gold Think of a love that has never grown old In the cold brisk days of winter when the sun the clouds do hide I'll be there to warm you , I am always by your side I pray that when the years have passed and this life grows to an end There will be a new life to share our love again Written for Johnny in 2001 Lillian BELIEVE!!!!!!!!!!

How does the idea of having a cancer patient's bill of rights sound to all of you. I know that congress has been playing with the idea of a patient's bill of rights for years. I'm not certain if all or any of their ideas have been acted on. I do know that even if such a bill is passed it has two flaws. One cancer patients have different needs than others and two there are no ways incorperated into their ideas that would allow monitoring to see if the rights are adhered to or punishment if they are not. I suggest that we all use our experiences to make a list of what we believe are cancer patients rights. Maybe use a thread here to do that. Once we feel our list is complete start sending it out by email asking for signatures. A lot of people can be reached that way. Then we could send it to members of congress and the media. It may not get a bill passed but it would sure put the plight of cancer patients in the public eye in a way that teaches them something that may some day benifit all cancer victims. Any ideas on this subject? As for me I have the first three rights already. 1. As a victim of cancer you have the right to be treated as a person NOT a disease. 2. As a cancer victim you have the right to decide if your life is worth fighting for. 3. No one has the right to harass or torment you if you chose to fight or not to fight the cancer. It is your body, your life and your choice. Please let me know what you think of this idea. Some how we have to make the rest of the world know that cancer is a disease that anyone can get and that if you get it you expect the same treatment and attitude that a person with any other disease or illness gets. Lillian