I want to appologize

[lilyjohn]

Now that I have told the whole story of the days leading up to Johnny's death I want to appologize. Not for telling his story but for causing offense to anyones senses or frightening them. That is not my intention. I just want people to be aware.

So many of the things that not only led to Johnny's death but caused us both torment that even my vivid discription can not show completely should never have taken place. Had one person been as insistant as I am to tell his story maybe what heppened to him would have never taken place. Had people been aware would they have dared to do some of the things they did?

I still have many questions about Johnny's diagnosis of lung cancer but that is not what really matters any more. The fact is that he had been diagnosed with it right or wrong. It was that diagnosis that caused the problems. I have learned much in the last two years. Once a person is diagnosed with lung cancer the attitude toward them changes. No matter how well they handle treatment or how well they respond to it they are still seen as a disease, a non person. Things are done to them and things said to them that would never be said to anyone with any other disease. It is that attitude that destroys lives if it takes them or not. Most people shy away from learning about lung cancer because of that attitude. When they are forced to face it because it has hit either themselves or someone they love they have to learn as much as they can as fast as possible. In my case I had no one to learn from. Everthing was trial and error. Mostly error on my part as well as others.

It has become my lifes work to do all I can to change that deadly attitude. If I step on some toes along the way or offend someone senses I am very sorry. That will not stop me. Our story is one that needs to be told. If somehow one person is spared some of the torment that Johnny and I faced I will consider it well worth the effort.

In the recent election we heard so much about morals. I find so much of that hipocritical. When I filed complaints about Johnny's treatment by Jump his behavior was excused because he claimed that treating Johnny when he would not sign a DNR went agains his morals. Still his morals and ethics allowed him to harrase and abuse Johnny's rights. People who cry about how precious life is when talking about abortion turn their back and allow things to happen like they did to Johnny and no one is held accoutable. Where is the morality in that?

So I tell our story every chance that I get. I may drive people away because no one wants to face the reality that I live with. If that is the case so be it. All I can do is plug on and hope that maybe someday just one person will be spared some of the torment that Johnny and I went through. When that day comes something will at last come from his death besides this terrible agony that torments my soul.

[SDianneB]

Once a person is diagnosed with lung cancer the attitude toward them changes. No matter how well they handle treatment or how well they respond to it they are still seen as a disease, a non person. Things are done to them and things said to them that would never be said to anyone with any other disease. It is that attitude that destroys lives if it takes them or not. Most people shy away from learning about lung cancer because of that attitude. When they are forced to face it because it has hit either themselves or someone they love they have to learn as much as they can as fast as possible. In my case I had no one to learn from. Everthing was trial and error. Mostly error on my part as well as others.

Lily, we all sort of learn through this, don't we. It seems like such a little time since I started down the road of dealing with this disease, yet it's been about 6 months already. Like you, I've had some frustrations with the way I've been treated by medical professionals (and I use the term loosely for some of them), especially the thriving bureaucracy that exists within the system itself that doesn't necessarily involve direct patient care.

I think sometimes that if I have one more oncologist look at me with that "blink-blink" look, and then say "well, it could be this or that or this ..." it will be time to scream!! With one, my mistake was expecting him to be a human being, and with another, I failed to find out her credentials and qualifications for treating lung cancer specifically (she's a breast cancer specialist I found out later -- my bad). I can't and don't *blame* either one, because they are who they are. But, I hoped for more when this started, and as a result, have developed a bad case of skepticism that isn't a great thing to have when one has cancer.

Fortunately, the other physicians I've seen have been wonderful. Unfortunately, the ones I needed most to treat the cancer -- the oncologists -- are the ones who have left me with a feeling of disappointment.

I talked to a friend this week who called to see how I've been doing. She lost 2 husbands to lung cancer -- both of them had severe brain mets by the time it was diagnosed. One never smoked a cigarette in his life, the other did. Her first husband, the non-smoker, went to a hospital where they were going to try WBR. The hospital had a new MRI machine, and as my friend found out later, it had been almost given to them on the condition that they do "x" number of procedures in it each month, and allow the company to send other potential buyers in to see the machine. Her husband was hospitalized for 18 days, and had 13 exams in that MRI machine. They were just using him as a piece of meat to run under the scanner and help meet their quota. (They were told these scans were needed to measure the effects of the radiation therapy he was getting. ) By the time she figured all this out, they were after her intensely to pay a big hospital bill (he'd been laid off and had no insurance). Once she confronted the hospital CEO, she didn't pay a dime. And the doctor who ordered all those scans refused to even discuss it with her, but did write off his bill too.

I often wonder what happens to people who are treated like this and don't know any better than to think it's "normal." I know the feelings of desperation that can come over you at times, and can see how very easy it would be to just do anything you're told in hopes that it will be the right thing.

And on Thanksgiving, the negative is there yes, but the positive side is that we DO learn, and we DO go on, and we DO try to find better care when we need it. At least in part, I have people like my friend and you to let me know I'm not the only one on the planet this happens to.

Take care.

Di

[kimblanchard]

Hi, Lilliejohn,

I don't have the answers, that is for sure, but I just wanted to let you know, I read every word of your saga, I needed to read it, and it was helpful. I gained knowledge and insight. Most of all, my heart goes out to you.

A few minutes ago I read about your miracle of finding the praying hands. So - I think Johnnie is okay and he wants you to be okay, too.

You have done what you could. May God Bless You. Margaret