Lillian's Story

Lung Cancer carer Lillian Duplantis and husband Johnny - Guide4Living

Lillian met the love of her life, Johnny, in February 1959 a few days before her 15 th birthday. In her words “it was as if when we met we had loved forever and only needed to meet.” But Johnny was 25 and a disapproving uncle warned him to stay away from Lillian (though she didn’t realise until many years later why he had broken her heart). She ended up in an unfulfilling marriage for 41 years until filing for divorce. She was reunited with Johnny when both realised their love for each other had survived a separation of more than four decades. In the intervening years Lillian’s mother died of lung cancer.

In 2002 Johnny was also diagnosed with lung cancer and Lillian says her world ended with his death at 4.55am on December 2nd of that year. Not surprisingly she has a lot to say about lung cancer – about the lack of funding for research, about misdiagnosis and the sometimes arrogant attitude of the medical profession towards the disease. So here is her story.

“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 person’s 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 person’s sense of security. Add that deadly attitude that I talk about and you have a situation that causes havoc in every life that it touches. I want to try to explain what I mean by that attitude. 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 themself. Even AIDS has become a disease that people no longer see as something that people deserve because their lifestyle asked for it. Since tobacco smoke has been linked to lung cancer most research into other causes has 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 x-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.

The opposite happens to those who have smoked like Johnny. When something is seen on an x-ray it is assumed that it’s lung cancer because the person smoked. Often testing is minimal. It takes a series of tests to not only determine if a person has lung cancer but what type it is. When the assumption is made often those tests are never taken. There are many things that can show on an x-ray. Even a CT scan can not give an accurate diagnosis. A biopsy of the lung is the only way to be sure and often it takes even more than that to give an accurate diagnosis. A lymph node biopsy is an indication but it is not a way to make a positive diagnosis. It also normally takes one to three days to get what information they can from one!

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 godsend 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 a cancer survivor! Someone who should have known better. When I questioned them about 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.

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 fitted into 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. 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 pulmonologist 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 the doctor he was going to (the referral doctor) 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 whether 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.”

Click here to read Lillian’s step by step account of the medical treatment he received after his diagnosis, including details of the medical blunders she believes contributed to his death.

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