lilyjohn Posted January 19, 2005 Share Posted January 19, 2005 Many of you know that I have been writing the story of mine and Johnny's relationship and my life sense his death. I have often shared some of that writing with you. You have been very patient with me and kind. There have been many discussions here about some of the things that I have written about. Things that are very important to me. Now I have fininshed writing my story. I'm not sure that I will ever even try to do anything with it. It has helped me get as far as I have come so it has served it's main purpose. The last chapter is a short one but it sums up all that I have learned and some of the beliefs that I have come to know sense Johnny's death. I would like to share it with all of you. I think there is much that you can relate to so please bear with me. Last chapter: Being a care giver is one of the hardest jobs a person can ever do. It can drain you physically, mentally and emotionally. It can also be one of the most rewarding things you will ever do in your life. It doesn't matter if you chose it as your profession or if it is thrust on you when someone you love needs that special care. When someone you love is diagnosed with Lung Cancer those things are multiplied ten times. Not only is your world turned upside down but your heart is turned inside out. Life will never be as you know it again. Not only do they have cancer but you do as well only in a different way. Most people who know Lung Cancer up close and personal describe it as a roller coaster ride. No other name could be so accurate. Just one small piece of good news can send you soaring to the heights then one unexplained pain or symptom can send you plunging down again. As a care giver there will be times when no matter how much you love someone it just gets to be too much. You just want to stop and get off but you can't because the ride is moving much too fast. Just when you think that you have given all that you have to give you will be asked for more. That is when you reach down into the depths of yourself and find more to give. The physical side of the disease is bad enough but the mental and emotional side are often more devastating. The two main treatments for Lung Cancer consist of pumping poison of one kind or another into a persons body. Poison that can not only kill the cancer but many other good body cells. Cells that are needed for a person to live a normal and comfortable life. Those poisons make a person's hair fall out and deplete the cells in the blood. Red cells that carry oxygen through the body and white cells that protect against other diseases. All of those things produce emotional and mental side effects that destroy a persons sense of security. Add that deadly attitude that I talk about and you have a situation that that causes havoc in every life that it touches. I have written much about that attitude and now I want to try to explain what I mean. There are at least two sides to that attitude, each as dangerous as the other. Lung Cancer is the only major disease still seen as something a person brings upon them self. Even AIDS has become a disease that people no longer see as something that people deserve because their life style asked for it. Sense tobacco smoke has been linked to Lung Cancer most research into other causes have been stopped. Billions of dollars are spent world wide every day trying to find a cure for AIDS and other forms of disease. Lung Cancer has become the biggest killer in the world yet only a fraction of the money spent for research on other diseases is spent on Lung Cancer. Why? Could it be the stigma attached because of the connection to tobacco smoke? The idea that people bring it on themselves? Only 15% of smokers ever develop Lung Cancer. On the other hand nearly one third of those diagnosed have never smoked or been exposed to excessive amounts of tobacco smoke. The fastest growing number of new diagnoses is in women in their thirties and forties who have never smoked nor been exposed to smoke. It seems that should make someone take notice and try to find out why. I have heard some real horror stories associated with that part of the attitude. There are actually people who have been called liars because they tell people that they never smoked but still have Lung Cancer. Not only by those who don't know any better but by those in the medical profession who should know better. Then there are those who are not diagnosed until they are in the latest stages of the disease. Why? Because despite having all of the symptoms their doctors would never order tests for Lung Cancer, in some cases not even a simple chest ex ray. The reason given was because they did not smoke so they could not have Lung Cancer! And that came from professionals. People that a person has to trust their life to. Now I come to the other side of that attitude. The side I know is responsible for Johnny's death and possibly hundreds if not thousands of others. Lung Cancer even when caught in the earliest stages is considered a killer. No matter how determined the patient or the doctor is to beat it there is always that underlying thought. Even the best most aggressive doctors do not really have faith that the person can be saved. They may try to always show a positive attitude but what they would never say in words comes through in both body language and often in the treatments they prescribe. Medications can be a God send for someone who is suffering. They can also be killers when given indiscriminately. Often those drugs are given to Lung Cancer patients under conditions that they would never be given to anyone else. There are multiple warnings about them affecting a person's breathing. There are also warnings about mixing some of those drugs. I will never forget what I was told by that pharmacist on the Washington medical board. "When a person is diagnosed with Lung Cancer they are considered terminal and all precautions no longer apply." I have been involved in many discussions about statistics. Most people agree that they are not only inaccurate but dangerous. Statistics take away hope when they are as bad as those associated with Lung Cancer. I believe that those statistics are what cause doctors to not have any hope of curing a person and throw away caution when giving drugs that can and do kill. How many deaths actually occur because of those drugs not cancer? Those statistics are at least partly responsible for that deadly attitude, the treatments given because of the statistics cause more deaths. A vicious circle just continues. The statistics end up feeding themselves. The losers are always the patients who have to not only fight the disease but that attitude as well. Time and time again I encountered that attitude while caring for Johnny. I was even asked point blank what I was going to do when he died. I was asked that question at a time when he was so well that it seemed certain that he would beat the cancer. I was also asked it by an cancer surviver! Someone who should have known better. When I questioned them allowing him to become addicted to the Vicodin I was told time and time again "what difference does it make? he has Lung Cancer". The difference it made was his life, not only his life but the quality of both of our lives the last few months that he lived. When as a care giver to a loved one your hope is constantly under attack it takes a heavy toll. No matter how hard you try that hopelessness affects your behavior. It can also be transferred to the patient by body language and other things. I can not help but wonder if the medical professionals approached Lung Cancer like they do other diseases how many more lives could be saved. In most cases doctors treat an illness or medical problem like something they can either cure or control. I hope that someday they will apply that same attitude to Lung Cancer. Now I come to something else that I believe very strongly in. No one has the right to judge another's quality of life. No one has the right to end a person's life because they judge their quality of life as not worth saving. In almost every instance I have noticed that a person died not long after receiving Morphine. That is a subject that I have had lengthy discussions about with a number of people. I know that in some cases when a person is actively dying Morphine eases them out of this life with less discomfort. I have no problem with that. My problem comes when it is given when a person is not actively dying or for things it is not meant to be used for. Recently I learned about something called "futile care policy". It is something that is not well publicized so few know about it. It has also not been legalized in many places or hospitals. Because of what I saw with Johnny I know that many hospitals and doctors follow that policy even where it is not legal. I also know that they can put anything in a person's medical records to cover it up. That policy states that a doctor or hospital has the right to judge weather a person's life is worth saving. If they decide it is not they can refuse any treatment that could keep the person alive. They can also justify giving those drugs that kill by using that old rule of double effect. I have read several stories where treatment had been withheld from a person because they were considered unable to be saved or their quality of life not worth saving. A family member would not accept that and hired an attorney to fight for the person to receive care. Once care was ordered or another doctor took over the case the person recovered and went on to live and get stronger. I believe that no one has the right to play God! I know that cancer did not kill Johnny. I also suspect that he may not have had cancer. If he did I am sure it was in a much earlier stage than we were told. I strongly suspect that fungus was a large part of what was in his lungs. I have read about others who have had fungus at the same time as cancer even when never exposed to the things that Johnny had been. Johnny never fit the pattern of those who have Lung Cancer. Not from the moment he was diagnosed or during the time he was dying. As soon as he received treatment for pneumonia his condition started to improve. By the time he started chemo he had already started to gain weight. He had no pain once he received the therapy that relieved the pain in his shoulder and neck. His breathing steadily improved along with his lung sounds. While at chemo the differences between him and the others being treated were very obvious. During his death he displayed none of the things that are normally a part of the dying process, especially those associated with Lung Cancer. Not one time did he receive the proper testing needed to not only give an accurate diagnosis but to rule out other problems. He was never tested to check for liver damage caused by drugs. A standard precaution in most people being given any drugs that could affect their liver. He was also never seen by a pulmonaligist to evaluate his lungs or help with the problems caused by his disease and the medications he was being given. From the very beginning his treatment was substandard to say the least. Even more it was harmful. I believe that many of the reasons for that were because he was a smoker and also because he was older and alone before I got there. Often his doctor he was going to would not answer his questions. The only time that Johnny ever got any kind of answer or co operation from him was when his son showed an interest and went with him. I find something very wrong with that. Had his doctors tried to find out why he didn't fit the pattern they saw in other patients they may have saved him. At the least they could have saved him much of the mental anguish he endured because his anxiety problem was never properly treated. By following his case to learn why he did so much better than most others they could have possibly learned something that would help others someday. At the very least they may have learned how and what to check for that could be at least partially responsible for other things, fungus specifically. Because they tried to make him fit the pattern that they knew instead of finding out why he didn't he lost his life and an opportunity that could possibly have helped others was lost. I want to advise anyone who faces a serious illness weather it is your own illness or that of a loved one to find a support group. Not only will they help you deal with the emotional side of your illness but they can provide a wealth of information. There are hundreds of treatments for most diseases. Often we only know about a few of them. By joining an on line support group you can learn about what else is available. You can also learn what tests can help with a proper diagnosis. You can never find another place where you will learn as much as you will from the people who are in the same place you are or have been there. I only wish that I had found my message board while Johnny was alive. I know that it would have made a major difference in our lives. Johnny and I often spoke about our regret that we never had a child together. I have come to realize something recently. We may not have had a child together but our children do contain a part of both of us. I see a lot of myself in my children and grandchildren. Much of who I am I learned years ago from Johnny. He influenced how I think and feel about so many things. Because of that I have passed a part of him on to my children even tho biologically he is not a part of their lives. Last night I got an email from Johnny's youngest son. I think about him often and worry about where his life is going. I have lost the anger that I once had at him for things he said or did to Johnny. I can see that he is still a child in many ways. Johnny loved him so much that he passed that love on to me. Hearing from him last night made me realize that his son's have also become mine in some way. So we really do share not one but all of our children. Now I come to my beliefs and how and why they have changed. I also want to say something that I hope will make others more sensitive to those of us who have lost a partner. Losing anyone you love is a very painful thing. When that person is the one that you share everything with it is impossible to make others understand. In one way I am fortunate. There are many people who just can not face being alone for any amount of time. I do not mind being alone. I am seldom lonely any more. I value my time alone and often guard it selfishly. I miss Johnny with every part of my being. He completed me. It is very hard to know that I will never have an intimate relationship again. I am not talking only about the physical side of a relationship when I say that. I am talking about the things that make up a couple who belong together. I miss the hugs and the touch of his hand. I miss the light in his eyes when he looked at me. There is no one to share my deepest thoughts and feelings with. There is no one to laugh and cry with that knows just what makes me laugh or cry the way he did. There is no one who knows all of my faults as well as my best side. There is no one to love me unconditionally every day of my life even knowing my faults I know that there will never be another man in my life. I make that decision knowing that I will never have the things that I have lost. I make it because I know that there is no one who could ever be more than second best. Not only would that be unfair to him but to me and the memory of the love that I shared with Johnny. I am sure that there are those who read about my belief in the signs from Johnny who think that I have either lost my mind or am telling myself what I want to believe. I can certainly understand that. Just a few years ago I would have thought the same. I have heard it said that a true test of your sanity is if you question it. I have questioned mine so much that I am just about guaranteed to be sane! I have lost many people in my life time. Three out of four brothers have died and so have both of my parents. There have been many other family members and other people who were like family. I never experienced anything unusual after their deaths. I always believed in God and the Bible and it tells us that we will have everlasting life. I never really thought about it other than that. I didn't deny that life goes on I just didn't ever really think about it. I'm not sure why it took Johnny's death for me to start to experience things that have made me really believe that life does go on. Maybe it was because being so alone my need was so great. I think the real reason is because the bond between Johnny and I is so strong that nothing can break it. I have questioned myself time and time again. I have doubted what I have seen only to have things happen that I can not doubt. Once things started happening to me I became more aware of other people talking about what they have seen. Almost every person who I have met sense Johnny's death have had some kind of experience that tells them that their loved one is still with them. Many of the things that have happened to me have been shared by others. Until recently most people kept that kind of thing to themselves afraid that people would laugh at them or think they had lost their minds. Today life after death is a subject that has found it's time. You hear about it everywhere, on television in the movies and on the radio. There are hundreds of books written about it and more songs written each year. Not only does this give us hope of seeing the ones we love again but it gives us hope for ourselves. In a time when Earth seems to be plagued by more and more natural disasters we all need that hope. We also need to turn to God more. I can't help but believe He allows some of the disasters so we can find the best in ourselves and reach out to Him. It is time to bring my story to a close. I don't know where or when it will end any more than I know when or where it started. It is just time for me to go on to the next phase of my life. Time for me to live my life the best that I can until I leave this Earth for a better place. I have written many things here. There are some that I will go back and remove. I was very angry and wanted to somehow punish Johnny's sons for the way they had treated him and their seemingly lack of love for him. I wanted them to see how much he had sacrificed to keep them from being hurt. I wanted them to see just how much they have lost. I know that was wrong. Many of the things about their mother Johnny would never tell them. Not only did he endure years of mental abuse from her to protect them but he sacrificed the kind of relationship with them that he wanted and needed. If I let my anger be responsible for them learning those things it would not only be a violation of his trust in me but would make all that he endured have been for nothing. I know beyond a doubt that Johnny still lives in a dimension that exists somewhere close to ours. I believe there is just a thin vail separating the two dimensions and sometimes that vail slips and lets us have glimpses of that other dimension. I know that Johnny sees and knows what is happening in my life. I also believe that he does what he can to help me. I know that he is staying close to me because I need him so much but I believe it is much more. He still needs me and is waiting patiently until the day that I will join him. As the words of the song says "Every now and then as soft as breath upon my skin I feel him come back again and I believe." Quote Link to comment Share on other sites More sharing options...
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