lilyjohn

I set here at night reading all of your posts and my heart goes out to each and every one of you. You will never know how much I wish I would have had a place like this to turn to last year. Maybe if I had my Johnny would still be alive. It means so much to have some one to share with when you are in that battle. Unfortunatly I was in the battle alone with Johnny. We had no one to really help and I had no time to try to find a place like this. As I read each of your posts I see one thing in comon, You all talk about hope and fighting the good fight. I know how important that is. I believe that attitude is the best tool to fight cancer. Not just the patients attitude but the attitude of the ones he intrusts his care to. Soon after Johnny died I put those thoughts into a message that I wanted to get out to people.It is a message of hope. I have had much positive response to it. I would like very much to share it with all of you. I have put much effort in trying to make changes and searching for and demanding patient's rights. In some way maybe that can be my way of honoring my Johnny. 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 diagnoses of cancer is probably the most devestating 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 harmfull 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 interfer 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 interfer 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 personaly 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 enclude 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 posibility 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 wonderfull 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. I dedicate this and all that I can do to change things to him.

All medications have warnings about side effects and precautions. What I am saying is that in many cases those warnings are totaly ignored because of a cancer diagnosis. I was told that by the pharmacist at the medical board. He said that cancer especially lung cancer is considered terminal and all precautions are no longer considered. Ambian and Ativan are both benzadiapines. They are usually well tolerated but in some people they cause adverse reactions especially the Ativan tho it says that is usually dose related. The one thing all of the drugs both opiods and benzadapines as well as antidepressants have in common is that they slow down breathing. When a person is not breathing as fast nor as deep as they should carbon dioxide builds up in their blood causing an unbalance of blood gases. That can be dangerous but also it can be mistaken for a worsoning of the cancer instead of a symptom of over medication. Any lung problem requires caution is using medications but when cancer is diagnosed doctors just don't worry about those things. I believe that they should use the same precautions and have the same kind of intent with cancer patients that they do with any other kind of disease. They should aim for a cure and the best health posible dispite statistics. I think that statistics would be far better if it were not for the indiscriminate use of medications especially the stronger pain medications. Granted some people really need them and it that case they should be used. I just think in many cases they are given far too soon or for much longer than required. The best way to find out about medicaitons is to read about it on the web. There you will find the side effects and warnings. Medication when used right can do wonders. I just think that because they know the dangers and they believe that cancer will never be cured they give time lines that in many cases would have a different outcome had they paid heed to those warnings. I hope this helps you. Go on the web and search. Make sure you know exactly why the medication is given and what the side effects are as well as the precautions. Don't just read. Study the information then ask questions and demand answers! Best of Luck to you and your dad. Lillian

Precautions and medications As any of you have read my posts know I blame Johnny's death on both attitude and medications. Because of that I have done a lot of research. That belief and a conversation that I had with a pharmacist who worked for the medical board in Washington as helped me with a theory. When I called the medical board to find out how I should dispose of the injection able morphine that the nursing home gave me he made a comment. This comment came as answer to my question about why did they give Johnny so many medications that clearly stated that he should not have been given them. This was his answer. "When a person has cancer especially lung cancer they are considered terminal and all precautions are no longer considered." I find that so wrong and I have come up with something that you may all find interesting and may agree with. When a person has cancer attitude can be so important as you all know. It is hard to keep a positive attitude with the medical profession constantly telling you that there is no hope. Because of that many people develope anxiety as in Johnny's case. Soon they are experiencing either pain or shortness of breath. Many times that is because of the anxiety and the medications that they are taking. Then they are given more medication witch they learn to depend on. If they don't have it the pain and anxiety gets worse. Soon it is not enough by itself so other medications are added. Doctors pay no heed to the precautions so many times the situation just gets worse. I believe that the doctors know that and that is why they give time lines for a persons life. They know that in many cases it is not the cancer that kills but the medication. I believe that is why so many people have such positive results from alternate treatments. I also believe that is why doctors don't want to discuss them. Treatments such as touch therapy and sound and visual therapy relieve stress and anxiety. Diet often helps ease the side effects of the chemo or radiation. Because of that the patient requires very little pain medication or anxiety or depression medication. They recieve spiritual and emotional support and that too helps with those things. Many people live longer better lives because of the alternate treatments and because they reduce the amount of the dangerous and adictive medications that they take. Does any of this make sense? I really believe that it does and that is why I support other things over medication unless the medications are absolutely necassary. That too is why I say seek help from other means not just doctors. The have tunnel vision and refuse to see other things as positive. Let's find a way to out wit them! So many people already have. I have read post after post on all of the message boards stating that the cancer patient is using these things behind their doctors back and the doctors can't understand why they are doing so well!! I have heard it said that a little knowledge can be dangerous. My answer is don't settle for a little knowledge learn as much as you can and then dig some more to learn even more. Cancer can be beat there are many alive to attest to that. Maybe the "cure" for cancer is knowing what to do and what not to do. I also believe that a person should be told why they are feeling the different reactions of their body. Knowing the exact reason, not just a few words that frighten more than anything else, can mean the difference between a good quality of live and torment. Lillian

I wrote the following message after my Johnny died. I hope it helps. If you want to see what attitude can do request Johnny's story by emailing me at lild@peoplepc.com The story is long and detailed buy it may give you some valuable informatioin on what to do and what not to get caught up in. Best of luck 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 diagnoses of cancer is probably the most devestating 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 harmfull 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 interfer 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 interfer 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 personaly 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 enclude 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 posibility 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 wonderfull 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. I dedicate this and all that I can do to change things to him.

Hello I am new to this message board. I belong to several others and I have a message to get out to people. I have found that Hope can do wonders and taking away hope can often kill. The man I was living with and going to marry was diagnosed with NSCLC in July 2002. His prognosis was one to two years depending on how he responded to treatment. He had chemo and after the first 6 treatments the nodules had shruk 50% and he had gained back all of the weight that he had lost plus more. At total of 30 pounds. He had the best attitude and was determined to fight the disease and was doing a very good job untila chemo nurse and his doctors started telling him that no matter how good he was doing there was no HOPE. That led to anxiety that they refused to address and then to panic attacks witch again his doctor chose to ignor. To try to help himself he turned to the Vicodin that he had had earlier. It made the anxiety worse but instead of warning him of that the doctors and nurses had the same answer each time I questioned his use of it."He has lung cancer what difference does it make if he becomes addicted?" that attitude and the uncontrolled anxiety that was never treated until it had gotten out of hand and the addiction to the Vicodin he developed sent him to the hospital seeking help. The help he got was to give him medication that he was alergic to and blame the bad blood gases on the cancer. They continued to give him more medication and then never monitored or took his vital signs for several hours. When I questioned I was told that he was just tired and that they did not want to disturb him. As a result on December 2, 2002 only five months after beging diagnosed he died. It was not the cancer that killed him. It was attitude and taking hope away from him. Is there anyone else who has had and experience similar to this one? Sense his death I have set out to try to make changes in the system that allows these things. Part of that process was to write in detail his story. It shows just how fast a situation can get out of hand and turn a possible cure of remission into a death sentence simply because of attitude and taking away HOPE. The story is very long and has much detail. I will share it with anyone interested and would love to hear other stories like mine or stories of survival and how attitude and Hope helped. Please email me with anything you have that I may be interested in and if you would like to read John's story. God bless all of you there. I know first hand what you are going through. Maybe someday with persistance and hope we can change the outcome of this terrible disease. Lilyjohn lild@peoplepc.com