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Time for a change


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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.

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