New and anxious to post

[lilyjohn]

Hello everyone. My name is Lillian and I am afraid that I was so anxious to post my message that I did not follow protocal.

Johnny and I were sweethearts 44 years ago. I was but 15 at the time and he was 11 years older than I was. One day a family member told him to get lost. I had no idea why he disappeared. His return was a year and a half later just days before I married someone else. Our lives went their seperate ways until the end of 2000 when I had a very realistic dream that sent me in search of him.

My marriage of 41 years was never what a marriage is supposed to be. When I went searching for Johhny my marriage was at it's end. When I divorced in the beginning of last year I moved from Louisiana to California to be near what is left of my family, brother, nieces and nephews. It was hard to leave my children and grandchildren behind but I knew it was time to start a life that had some promise for myself. I needed to feel like a person again.

Johnny and I continued to talk on the phone and I knew that he had not been well for months. In May 2002 he learned that he might have lung cancer. On Father's Day June 16th while at the emergency room he called me. Everyone was telling him that he had lung cancer tho no real tesing had been done. I dropped everything and went to Washington to be with him and take care of him. The first few days were very hard because he ended up in the hospital with pneumonia. While there he was diagonsed with stage IV NSCLC tho still the testing left much to be desired.

He was started on Carboplantin and Taxol on July 17th. His attitude was the best I have ever seen. He was determined that he would beat the cancer and become a surviver. We had 3 of the happiest months of either of our lives. He improved daily and gained back all of the weight that he had lost plus more, a total of 30 pounds. He just breezed through the Chemo with no serious problems. He had everyone convenced that he would beat the cancer, everyone that is but the doctors and nurses at chemo. A remark from a nurse at chemo started a chain reaction that led to his death on December 2,2002 just 5 short months after being diagosed. Our life together was cut short.

So many things went wrong that it just didn't make any sense. When doctors start to tell you lies about a person's condition and refuse to answer basic questions it causes you to start questioning everything they do. Because of anxiety and panic attacks that his doctor refused to address he ended up in the hospital where he was given drugs that he was alergic to and then never monitored. His death was a direct result of that. I have been working sense his death to find not only justice for him but a way to prevent what happened to him from ever happening again.

I have written his whole story as many of you know. I have had several requests just from this message board and am always willing to send the story to anyone who wants to read it. I think that through his story many will be able to see what the pitfalls are to watch for. I will say that on this site, that is much more active than any of the others I am on, I see so much positive attitude and support for oneanother. I wish to God everyday that I would have had that at the time I needed it. Johnny's sons were not helpful to us. We were in the fight alone and being a novice I had no idea what to watch for. I believe had I known more Johnny would still be with me and I would not have this hole in my heart that never stops bleeding.

Sense his death I have become an advocate for patien's rights and for change in the way cancer is looked at. I want it to be seen as a chronic disease that is treated like anyother with the outlook that it can be beaten and will be. I believe that the attitude of the medical profession is so negative where cancer is concerned that many things are done to cancer patients that doctors would never even dream of doing to anyone else. That has to stop. Until that attitude is changed I vow on my Johnny's name that I will work tirelessly to see that change. It was that name that made me find this site. While looking for message boards to post my message I saw this one. The words that caught my attention were,Survival and Change. That is what my work is all about. Thank you all for being here. It is so wonderful to see the support that you give oneanother. Thanks too for the respone that I have gotten so far to Johnny's story and my other posts. You are all very special people and I know that together someday we can make those changes in attitude that are so important to survival.

Anyone else still interested in reading Johnny's story email me at lild@peoplepc.com and I will be happy to send it to you. I warn it is very long but I think worth the time it takes to read. My prayers with all of you. Remember Faith, love , hope, attitude and prayer are the strongest things we have to fight this terrible disease. Don't let anyone take those away from you. Thanks for everything. Lillian

[Cindy RN]

So sorry about your loss. You honor him with pushing for patients rights. Good Luck

[Guest Michael]

"a remark made by a nurse at chemo started a chain reaction that lead to his death...."

This is very irresponsible. I never heard of a nurse being so negative but anythings possible. However, it's not at all uncommon for Doctors especially Oncologists. The truth of the matter is Oncologist have very little trust and confidence in Chemo according to John Robbins, a leading expert on Nutrition & The Enviornment. A survery conducted by Mr. Robbins revealed the following:

Percentage of Oncologists who said if they had cancer they would not participate in chemo due to its, "ineffectiveness & unacceptable toxicity: 75% would not participate in chemo.

Regardless, Doctors and Nurses need to keep negative thoughts to themselves. Somehow, I would like to believe that the majority of medical professionals are not insensitive. Personally, I've only met one who was highly negative and this was several years ago. Maybe a sensitivity course in medical and nursing schools would help.

In my situation, I would want the Doctors to be very direct, blunt and to the point regarding my condition and chances of survival regardless of how negative so that I could either pursue other therapies or simply do nothing. But that's me.