The changing hands of time

[lilyjohn]

This time of year always makes me nostalgic. It brings a lot of both good and bad memories. I always find myself looking back but this time I am taking the time to note all of the changes not only in my life but in myself.

Eight years ago at this time I was just a few days away from the start of my last month with my Johnny. I was afraid, desperate and tired. I had no one to turn to. No one to help lead me down a road that I hadn't counted on and sure didn't want to travel. I had lost my mom to Lung Cancer in 1985 so I knew what the outcome could be but I had watched Johnny and his determination start to heal him. He was so convinced that he could beat the cancer that for a while he really was.

We lost the battle and my Johnny lost is life because of a careless remark by a nurse. How can you expect someone to stay focused on healing or fighting when someone takes away the one thing they need as much as love HOPE? That is what he did to Johnny and after that all I reached out to for help did the same. Because of that I lost not only the love of my life but my trust. Even after all of these years when I look back I know that that attitude and drugs took him away from me, not the Lung Cancer. We could fight that but there was no way and no one to help us fight that attitude. The lack of HOPE was the real killer.

I struggled to survive both emotionally and with my finances. I worked at the one thing that meant the most to me, being a caregiver. The pay was small and the hours long. The emotional rollercoaster continued, maybe that wasn't the best for me at that time but when I look back now I know it was what I had to do. I know it was what God wanted of me. To care for others was the reason that I was given that so precious few months with my Johnny. I needed the love and pain to bring me to a point in my life where I could do things that would make me proud of who I am. Something to make me feel useful and not selfish. Something to make my Johnny proud of me up there in his Heavenly home.

It was 10 months after his death that I found this web site. It was quite by accident. I was so angry at the way Johnny had been treated, so angry at everyone who should have been there to help him and wasn't. I came here because I wanted to tell his story. I wanted people to know that doctors and nurses do not always keep the patient's wishes and best interest. I wanted to condemn and I wanted to rage. I had met so many dead ends and still found no results and the anger and bitterness was turning me into someone I didn't know and someone I am sure my Johnny would never have recognized.

Once here for a while I started reading. There were so many stories both tragic and painful to read. I started to feel selfish for my own pain and anger because I realized I was not as alone as I had thought.

Very few of my first posts got any response but eventually people started to respond to me after I stopped raging so much. Last night I went back to my private messages starting from the first one. I read many of them and as I read letters from other people I began to see the changes in myself. I saw because so many others saw. One of my first responses was from Ann. She lost her Dennis just 2 weeks after I lost Johnny. We had many other things in common as well. We have never met face to face but I consider her one of my best friends.

After a while I got a letter, a very frank letter from Dean Carl. He not only told me how turned off he had been by my first posts but how he admired the change in me. We began to correspond and became friends. Over the years so many others here have touched my life. Many are gone themselves, many others lost loved ones and have dropped off of the board or just come to say hi once in a while.

I know that I don't come as often as I should. Time just seems to fly by now and I have so many projects that I never seem to have enough time for all of them. I am sorry to say that I have not given the kind of support here that I would like to. I don't know much about any of the new treatments, only what I read here and the ones that make the news once in a while. I guess you could say that my area of knowledge is grieving. That is why most of my time and attention is on the grieving section. I know grief and for some reason I seem able to reach many of the people who find themselves where I have been. I think that is because I have an ability to put those feelings into words and make people realize they are not alone. I do understand.

So once again this is getting too long. I think my whole point is I want the people who are just starting to struggle with grief to know that they are not alone. I want them to know that in time when they are ready if they channel the energy they spend on anger and self doubts and guilt (things we all tend to feel) into doing something positive for others they will become stronger and more able to cope with every day life with out the one they have lost.

I hope some of this makes sense. I hope that I don't just look like someone on a soapbox trying to push my own experiences at everyone. That is not my intention. My intention is to use the pain that I still live with to help others learn how to cope. To make people see that no matter how dark those days and nights are there is room for light in your lives still. Sometimes it just comes from using that pain to reach out to others. It isn't perfect but it gives back and sometimes that is enough. God Bless

[jaminkw]

Lily, you give and give. I only hope that in some measure it comes back to comfort you.

Judy in KW

[eric byrne]

Hi Lily,

Thanks for your wellwritten post,having completed my treatments I asked My GP if I could return to work,he replied,why not take some quality time out with your wife,as you have only two years left to live,adding, I once had a patient who survived five years with lung cancer,what a character-but you are not him!!!.My appointed lung nurse phoned me the day following my dx,during our conversation I happened to mention my work colleague,had told me his dad survived lung cancer for more than 10 years,and died with something quite unrelated to his lung cancer,her reply? Well Eric that wont be you,your tumor is in a bad position,well how long will I have then? five years? four years ? she replied,Well you are getting close to the ball park figure.

I just love the story about the honeybee,Its bodymass ratio to its wing surface area is so ill proportioned,that it just cannot fly,well since the honeybee dosnt know the first thing about the laws of aerodynamics if just goes ahead and flies.Well I have now passed my "sell by date" of two years given to me by my doctor and I am just going to keep going on posting here,boring the pants off everyone for years to come.

[lilyjohn]

Thank you Judy for your kind words. Eric I love your grit. Keep on fighting and don't let anyone rob you of hope. Without it what would you have?

When I first started my quest to inform people about the importance of hope and what having that hope taken away can do I posted on several message boards before I found this. I had many letters but I had two that stand out in my mind the most.

On man wrote me his story. He said after a few months of treatment his doctor told him to go home and get his affairs in order because he had 3 months to live. He told me that he went home got his affairs in order and decided that he was going to live. I never went back to that doctor nor had any more treatment. He had several other health issues that caused him some serious problems but as of the date of his letter he was still alive and doing well. The last line of his letter said but the way the day that doctor told me to go home and die was 6 years ago.

The other was from a lady who was a Breast Cancer survivor. I had written a paper about how the attitude toward cancer need to change. She told me that she kept a copy of my letter and when ever she got scared she would take it out and read it. She wanted my permission to share it with her Breast Cancer Survivor group because she too understood the importance of Hope and Positive attitude.

I have a copy of those letters stored on a disc somewhere along with many others. Sometimes when I feel that I am just spinning my wheels and not really making a difference I go back and read them and I know. I know only too well that no man has the knowledge nor the right to tell someone else when they will die. Only God has the knowledge and man has no right to dash hope or do anything to make their prognosis reality.

Again thanks for reading and sharing.

[lilyjohn]

Please excuse my typing errors. I tend to get on a subject and my mind and fingers work so fast that they loose coordination.