decision

[lilyjohn]

Hello everyone!

I have been away for awhile. Not far away but away from this board. That has not been by choice but simply because I just don't have the time to come here often. When I do come I search for news of the people I know. My time is so limited that I am afraid that I am not up to date on all of the new people. There are so many that I get lost just looking and I am overwhelmed by the numbers. It seems that the monster is still alive and well.

I seriously considered dropping off of this board for a couple of reasons. I just don't have the time to offer the support that I wish I could but there is another reason that really made me stop and consider dropping out. I know maybe better than anyone how important hope is in the fight against LC. Sometimes that hope is very slim and I would never want to be responsible for anything that would shake someones hope and determination.

Most of you who have been around for awhile know my story. I have some pretty strong views because of my personal experience and no matter how much I would like to help I represent a battle that was lost. My Johnny did not survive. Semse his death I have learned a lot and had hoped that what I have learned could help others but I may have went about it the wrong way. I have been intent on telling people what to watch out for and sometime that is just not what people want or need to hear.

Never the less I have decided that I just can't leave here. Everyone here and what this site represents has become very important to me. Leaving here would be a big loss for me and I still feel that I do have something to contribute now and then. Having said all of that I will give you an idea of what is going on in my life now.

Right now I am facing the 3 year aniversary dates of the first weeks that Johnny and I were together and his diagnosis. That is not easy but I am so busy that it is more manageable that it would be otherwise. I have been working many hours a week. I work all day each week day and often do overnight or weekend jobs. Most of my work is light housekeeping and helping with personal care for older people who have dementia. It is not a physically hard job except for the hours and the driving that I have to do but it is a very draining job mentally and emotionally. For some reason I seem bo be in demand a lot and my boss knows that I need the work to make a living. It all works out for me and I get a lot extra from what I do.

I still have to one lady that I wrote about a while back. I now have her on a steady routine of showers and personl care. She is doing much better and now accepts other caregivers. She has still not come far enough to shower or change clothes for anyone else but I am working on that with her because I have been cut back to only one day a week with her starting next week. Her son is concerned that her insurance will run out in 3 years. Considering she is 91 that doesn't exactly seem like something he should be worrying about but that is not my decision to make. I just do what I can for her in the limited time that I do have.

I have also learned to not worry about making a living. Sometimes I will lose a client and wonder how I will make ends meet than something else comes along. I have learned to just do the work the best I can and trust God to handle the schedule for me. It always works out. More than ever I feel that I am exactly where I am meant to be and doing what I am meant to do. So many things have happened that just can not be coinsidence. Is that why my life has taken the twists and turns that it has in the past 5 years?

I want to relay a couple of situations that will show what I mean. About a month ago my boss got a new client. This lady just wanted a companion once a week. Someone to talk to and go a few places with her. She just moved here a year ago and knows very few people. What I learned when I met her was not only surprising but makes me feel that I am being gently guided. I found out that this lady moved here from the area that I grew up in. The town where my brother and the many of my family members still live. We have so much to talk about because of that. Then to top it off she told me that she is an 8 year LC surviver! She had part of one lung removed and followed up with chemo and radiation. So far NED. Could my meeting her have be coinsidece?

I was going every other week to do some vacuming and mopping for a lady who can't do it any more. About 2 months ago her husband had a heart attack and my job ended. Last week I was sent back to her. I learned that her husband died not long ago. When I got to her house she told me that she had just gotten back from visiting with her family in Washington and there was really not much work to do. Instead we sat and talked for the 2 hours that I was there. She just needed someone to talk to and I guess I did too. Maybe it is because I can relate to a person who has lost their soul mate that I can get them to open up to me. The first thing I always tell them it that I will not tell them that I know how they feel because it is different for each of us. That seems to be what we all want and need to hear and it is much easier to talk once that is said. Not only did I learn that day that her daughter lives in the same town that Johnny and I did but just up the street a few blocks from where we lived. Once again I have to ask can this be coinsidence?

I was asked to do a special job yesterday morning early. It meant leaving home at 7 in the morning and not getting back until nearly 7 last night. I worked 9 hours plus driving time. On all of my 4 jobs I had just minutes or a half hour to get from job to job. I needed the money and as hard as it was something told me to take the job. You see this lady just lost her husband and needed someone to just clean her bathrooms. Once there I found out that her husband had just died last Thursday. The funeral is today.Before I got started we talked for a while and that is when I learned that just a few months ago she lost her son to LC. She too has many of the same questions that I do. I left her my phone number for when she needs someone to talk to and I told her about this board. She is still in shock from her husband's death but even now she is not past the painful days of her son's illness and death.

Can all of these things really be called coinsidence? I really don't think so. I feel that for some reason I have been chosen to do what I am doing. I feel that all I have suffered has been to prepare me and get me to where I am now. Does that sound too far fetched, to much egotistical or could I be right?

So I have learned that I do still belong on this board. I may not have a lot to offer those who are still fighting but I can relate to those like myself who are still reeling from the lost of someone so dear to them. I still think about all of you and pray each day that someday soon the monster will be conqured. I want to be here when that day comes to join in the celebration. In the mean time please let me know if anyone has heard from Paddy sense she moved and if you know how Norme and Dolly are doing. There are so many other sisters in pain that I worry about. My heart goes out to all of you.

I may not be around as much as I would like to be for a while but my thoughs and prayers are never far away. God bless and keep you all. Lillian

[Ann]

Lil....I am so glad you made the decision to stay with us. As I have told you so many times, you have a lot of things to offer to people that are battling this monster. You are so good with words and you always seem to say things that make others feel better. That, my friend, is a gift that many people don't have. Although you may sometimes feel that your presence here is not important, I feel differently. God has a purpose for each of us and just maybe your purpose is using your gift to help others along this journey!!!!

[mhutch1366]

Lil.. I'm glad you're back . Stay back, please? You've been missed.

XOXOX

MaryAnn

[Haylee_38]

Lily, I echo Ann's post in saying I believe you are

a true gift to everyone. You really do have such a

way of writting in making people feel better. Plus

you are so informative and that can be of help to

others. I am very glad you are staying it would

be a great loss to everyone here if you left. Haylee

[nancy c]

Glad you're back and I do think God works in ways that amaze us. You are a saint. God bless you and keep us the good work, Nancy C

[Maryanne]

Dearest Lilly,

No, I also do not feel this is a coinscience. These are all happening for reasons. You are like a guardian angel her on earth, to be physically here to help these people. Because some lived in you town where you grew up and one where you and Jonnie lived is to me a sign.

I feel you are a healer and these people were chosen and sent to you. You have great insight and will get so much satifaction out of helping those in need. That is why you cannot leave this board. You do help people, not here physically, but by your words of wisdom and support.

We understand that you are busy and cannot answer posts like you used too. But that is okay as long as you keep in touch with us when you have the time.

Peace be with you as you will go far in your aferlife for helping those who seek you out and are so less fortunate than yourself. You really form a bond to them and that is what gives them hope to go on. Your encouragement is what shines through.

You are a blessing Lily, keep doing what you are doing as the power of G-d will guide you.

Maryanne

[lilyjohn]

I want to thank everyone for your kind words. Believe me when I say they mean a lot to me but you have to know I am only doing what I have to do. Going where life leads me. If tomorrow I had the chance to give it all up, even as important as my work has become to me, and have Johnny back with me I wouldn't even have to think twice.

I first came to this board nearly two years ago. I was so lost. Several months had passed sense Johnny's death. I could no longer tell myself that I was in the midst of a nightmare and would wake up. Everyday the reality of my nightmare was hammered home. I was so angry and so outraged. For months I had done reasearch and written letters. I had filed complaints about Johnny's treatment and the way he had died. That day I had recieved another denial to my claims against one of the hospitals. They didn't deny what they had done to Johnny. They just excused it all because he had lung cancer. To make it even worse if possible they had claimed that what they had done to him was ethical and humane. I am so sorry but when someone deliberately takes another life there is nothing ethical or humane about it, especially when that person has made it clear that he is willing to go through anything for a chance to fight for his life.

All I wanted to do at that time was tell our story. I wanted people to know what had happened. Part of me wanted to make people aware that those things do happen and what to watch out for but I know too that I wanted revenge. I wanted to tell enough people so that someday word would get back to them and they would know that they really hadn't gotten away with anything. It took me a very long time to get past that even now I am not sure that I am really past it. I want Johnny to have justice and that is the only way I see it can happen.

There were so many times I just wanted to give up. I was struggleing to make a living and I saw nothing in life to look forward to. I just wanted to lay down and cover up my head and forget that I was alive because life was nothing but pain. It was out of desperation that I started reading the posts here. It was those posts that helped me to realize that I just couldn't give up for so many reasons. There were so many brave people here fighting the battle of their lives. That reminded me of how Johnny had never given up and how much he had given to me, the chance for a new life. How could I give up when he faught so hard, when he wanted so much for me? How could I give up when so many were going through so much and not giving up?

Slowly my focus started to change. I was still angry and frightened. There were so many strange things that had happened to me after Johnny's death that I thought I was losing my mind. I started to read about other's experiences and understood that I was not alone. That things happen that we can not always explain away. I began to relate to people and something at work made me realize that God is with us and that Johnny really is in a better place. I learned that my life had given me so many experiences that I could easily relate to many people. I also knew that there are so many people that no one ever listens to any more. People who have a whole life full of experience and all they want to do is share those memories with someone. I let myself become the one who listened. I gave to them what I would want someone to give to me. It is in that way that I have found the real way to give Johnny's death meaning other than the memories that haunt me and the terrible pain that I live with.

So now I just do my job. A job that for some reason God has chosen for me. I don't know why He has chosen me. I have made so many mistakes in my life. I have a bad temper at times and I have a sense of injustice that can set me off and make me fighting mad. Why would God choose someone like me to do something so important? But I know that everyday God walks with me and guides me. Who am I to question His wisdom even if I do feel so inadaquit?

Everytime I meet someone who has lost their soul mate my heart aches for them and myself. It is different for each of us and no one really understands exactly how we feel but there are just so many things that we do share. So many things that we all go though. I hope by listening and sharing my own heartache I can help them feel that they are really not alone because that is the one thing that is the most frightening. The feeling that you are so alone because no one can possibley know or understand your pain.

So once again I thank you for your kind words. I thank you for being there with me when I hit bottom time and time again. But most of all I thank you for being the kind and caring people that you are. The only kind of people who could have made this such a special place. Lung cancer may have turned all of our lives upside down but it didn't win because we really are all survivers!