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After Johnny died and I realized that his treatment was not normal and that had led to an early death I decided to do something about it. I said at the time that he hadn't died because he had cancer but because everybody knew that he did. I filed complaints and strarted researching learning as much as I could. I felt that there were some things that people needed to be made aware of. Things that are often not spoken in public and never addressed by the medical field. Because of that I wrote a paper on my thoughts.

I posted it on many public message boards but was not sure anyone would read it. I was also uncertain if it would pertain to the ones who did read it. Therefore I started posting in on on line message boards and got some very uplifting responses. Still I was not satisfied. I wanted to hit closer to home. I wanted patients that his doctors were treating to become more aware. Because of the claims I had filed and no medical proof, just what I witnessed I could not make a public claim and name names or let my name or Johnny's name be known.

It was just a very few months after Johnny's death but I did one of the hardest things that I had done so far. I printed that paper and one about questions and precautions as well as one on the rule of double effect. I went back to the chemo clinic. It tore my heart out to go to that place again but I felt that I had to. Right down the hall from where we went every week for chemo there is a bathroom. I went into that bathroom and left a stack of those print outs. I only hope that some of the patients or their families got them before someone who worked there did and threw them away. I sure wouldn't mind if one of them got back to the doctors or they got questions from patients about them.

I posted this one here when I first signed onto this board. Sense there are so many necomers here I thought it might be worth posting again. So I copy it here as it was written. The only difference in the ones I left in that bathroom is that I left off mine and Johnny's names.

Two of the respones I got that gave me the determination to keep working for the changes needed were from cancer patients. One told me that she had printed this letter and whenever she started to doubt or lose hope she would read it. Anohter belonged to a breast cancer survivers group. She asked permission to post it in their monthly news letter. I only hope that these things have helped someone and that because of that my Johnny's death was not invain. Once again here are my thoughts and the goals that I work toward. Lillian

It's Time for a Change

It is time for a change in the way cancer is viewed. I recently lost someone very dear to me. It is my belief that it was not the cancer that killed him but mind set. From the minute that he was diagnosed everyone saw him differently. They saw cancer and death. Not a good honest and gentle man.

A diagnosis of cancer is probably the most devastating thing that a person can hear whether it is yourself or a loved one being diagnosed. The first thing we think about is death. It is a mind set that virtually everyone has. We are all guilty. We as loved ones hear the diagnoses and we concentrate so much on fear of the outcome that we are unable for a time to do research and other things that is needed to help the patient. Doctors are guilty because they give medications that can be harmful and addictive with the outlook that the person has cancer they are going to die anyway. They ask what difference does it make. They take hope away from the patient who then has to not only face their own mortality but think of the ones they will leave behind if they die. It can cause extreme anxiety yet that anxiety is overlooked too often. They blame every symptom on the cancer never considering that there could be another problem. This can interfere with treatment and start the person on a down hill slide that is hard to stop. It causes such havoc in a person's life.

I have seen and learned so much in the past few months about cancer and it's side effects. Emotional and mental side effects both in the patient and others. I saw first hand what hope can do and I saw too what taking that hope away can do. It can cause a person to be sucked into a whirlpool of misery that can not only destroy the value of the time they have left if they are terminal but seriously interfere with any chance they may have to fight the cancer or have it go into remission.

We all need to start looking at cancer a whole new way. This is the 21st century. There are many things that can help cancer patients and more being developed everyday. There is hope. It may be a small one in some cases but it is there. We need to nurture that hope not destroy it. Next year or next week a cure could be found. It is out there somewhere and will be found and made available. How sad that so many will die weeks or even days before simply because they are given up on. Because hope has been taken away.

I believe that doctors should be trained to work with a persons mental and emotional health as well as the cancer. They should offer every patient some small ray of hope. If they feel that they no longer see a chance of the treatment they are using working they should offer the patient a chance to become a part of the clinical trials that go on everyday. If they feel their is no longer any hope why not give it a try? They should also be required to tell people that their are alternate treatments that in many cases work. That information should be made available to the patients so they can decide if they want to try them.

Now this is something that is very important to me personally because it had such a tragic outcome for the man I mentioned earlier. Every patient is offered the chance to sign an advanced directive. In many cases that will include a DNR. There are many out there I am sure that will want to do that not wanting to face the suffering that may lay ahead. There are also those who are willing to take that chance. They want the right to fight to live. They make a decision that is right for them. It is not an easy decision to make. Not only do they have to face death but the possibility of a lot of suffering later. It is their right, their choice and their body. No one, doctor or others, should be allowed to badger them or try to force them to change their mind. A doctor should not be allowed to refuse to treat them or stall until it is too late to do what is required to follow those wishes. It is their duty morally and by law to see that those wishes are carried out. Once the decision is made the patient should be left alone. Being constantly called upon to restate that decision or change their mind can cause harm in more ways than one.

It is a terrible thing to have to watch someone you love struggle with the issues that cancer brings into their life. It is even worse seeing the fear and confusion that they live with everyday. Hope can be such a wonderful thing and it can do wonders. Taking away that hope can be as life threatening as the cancer itself. Why not start thinking of cancer as a challenge to be met? There is hope out there tho in many cases it may be a small one it is still there. Why not treat every patient as if they will be one of the good statistics? Who knows maybe that is all it will take to make it so.

I have had some heart rendering experiences the past several months. I don't want to see other people have to go through that. The man I speak of often told me that I should write. I always put him off because I never thought I had anything worthwhile to say. Now because of his death and what we went through together I have found something to write about. His name was John Fields. I dedicate this and all that I can do to change things to him.

Written January 2003

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