heyjudefl1

After reading the messages above, I can see that we are all going through the same thing. The guilt-did we do all that we could do? Did we monitor the medications to make sure that our husbands were not being killed by too many drugs? I keep playing the night my husband died over and over in my head. What could I have done differently? He died July 3 and while I thought the last year was hell (he was dx in July 05) this is really hell. How I wish it had been me. Tami, Carleen I know how you feel. Part of you is missing and the horror of watching someone you love die in front of you is more than anyone should have to bear. You are never prepared for the reality of it. I tried to help him but it just wasn't enough. Nothing was enough. Each day now I suffer over and over and I just wish it would end. I don't really care anymore how it ends I just want it to end. I always had hope that if I just tried to help him that I could save him. Yeah, right. There is really no help and we are just left to pick up the pieces. I wish I could make things better but I can't even help myself. Everyone says "it takes time". I don't think there is that much time that would help me.

I am so totally shattered I don't know what to do. My husband died 3 weeks ago with lung cancer after a year of unbelievable hell. I cry in my home alone and tell everyone I am ok. But I am not. I smell his clothes and listen to his music and want him back. I want to die and join him because this life his not worth living. I drink wine which takes the edge off but only lasts for awhile. I lurk on this site because it makes me suffer more. When does the pain stop.

I debated for many days whether to write about my hospice experience. I did not want to influence anyone else who is facing the decision on hospice care. My husband Ray was diagnosed with NSCLC July 05. It was a year of hell for both of us. We had no life except cancer. When the cancer metastasized to the brain in Dec. 05 the medical profession really wrote him off. We still plodded along with treatments which were usually interrupted by medical problems and he never really completed any course of treatment. Hospice was mentioned so many times but we did not want to give up. To me Hospice was accepting death. Things got continually worse (the brain tumors were treated with radiation and Gamma knife, neurosurgeon said that the brain tumors would not be a problem)until about 2 months ago when he retained fluid in his feet and was having trouble breathing. Finally after no relief the oncologist said on the last visit, June 27 that we had 3 choices, Hospital, In Home Hospice or Hospice in a facility which happened to be in a regular hospital. It was presented to us that there would be all kinds of help both physically and emotional. After many sleepness nights and 24/7 care we decided to speak with Hospice. I really was desperate for some help. The representative came that night 6/27 and she explained what they would do. Half way through the conversation she said that it would be good for him to go into the hospice facility for a couple days so that we could get ourselves together and then he would come back home. We agreed. By this time it was 8p and she said that the earliest they could send a medical transport was midnight. I refused and the response was, "Well if you are going against my advice you will have to deal with this tomorrow." I told her I would not deal with it tomorrow and that if they did not come the next day to forget about it. They did take him the next day. The care was not very good and their philosophy was to die with dignity which in essence meant being drugged. No Pain. No Nothing. They (doctors/nurses) kept asking me if I realized why he was there as if I was mentally deficient (maybe I was). I had to continually fight the system (their system). I always knew I still was in charge and he was in the hospital and had access to emergency help. I and my daughter stayed with him 24 hrs a day and did all of his care. Sunday, July 2 about 6p he started having extreme breathing problems. The nurse said that he was going into pulminary failure and I could either let him go peacefully (morphine) or I could elect to take him to emergency but that I had one minute to decide. I begged him to tell me what to do. He just kept saying, Judy I can't breathe. I could not do this to him and I said I wanted to get him help. Obviously, against their advice. The nurse actually left him there gasping while she went to get the form for me to sign to release him from Hospice. They did try to help him in emergency but again I had to fight for him. He died right after midnight on July 3. I am inconsolable and while I do have doubts at times I think I made the right decision. I would do it again. I have never heard one word from Hospice. I guess because I did not play the game their way. My experience is not what I had always heard about Hospice. Sometimes I think it may have been my attitude but they are supposed to be the professionals and deal with emotions that cannot be compared to anything else in life. I think if anyone makes the decision to enter Hospice you still have to maintain control over the treatment and your life. It is not an irreversible decision and you can't just accept everything blindly. I hope our experience was unusual and that most others find comfort and help. My grieving goes on and gets worse every day. My life will never be the same and I only hope that sometime in the future I will feel whole again. Judy

My husband, Ray Nicholas just could not fight this hideous disease anymore. He died Monday, July 3 with his family at his side. The last year sucked every drop of life out of us. I wanted so much to help him but I couldn't. His suffering the last few days was too much to bear but I still wanted him to live. I did not want him to leave me. I feel so alone and I cannot face life without him. It is not fair that there really is no hope or help with lung cancer. He was a wonderful husband, father and friend and will be missed by many. He did not deserve what he was given. I have had a great deal of anger and frustration in the last year but I did find comfort on this site. I did not post very much but I did read many of the messages and even found a little hope now and then. It is too late for Ray but I hope that soon there will be help for the many that are facing the lung cancer battle. My thoughts are with you all. Judy Nicholas

I am overwhelmed at the response to my very depressing message to introduce myself to the message board. I was in tears just reading the kind thoughts that so many expressed. Truly, I do try to be positive and live each day to the fullest with my husband. It is just so hard to see him like this. We had a bad weekend because he had stopped taking steroids (dr. said cut down). After restarting the steroid on Sun. he was doing better. Yesterday he slept from 4A to 5 P. Just when I start to think he is doing better he seems to go down again. He was supposed to start a new chemo yesterday (Avastin) but Sun. night he said he just did not feel up to it and needed some time to recoup. As much as I wanted to see him doing some treatment, I understood his need for some time. I go up and down based on how he is. If he is ok I am ok. He has a hard time getting up from chairs, etc. as his muscle mass has shrunk (from Steroids??) I could go on and on but I am sure you have all been there, done that in one way or another. Please know that I so appreciate your thinking of us and it does help to be able to express my thoughts-good or bad, something I am not able to do very often with anyone. Judy

Thanks for answering. Husband DX with NSCLC Aug. 2005. Started Trial with Tarceva Sep. 2005 Hospitalized Oct. 2005 for Fluid Around Heart-Drained Back on Tarceva after hospital/New Scan Showed some Enlargment of Tumors-No Longer qualified for Trial. Nov. 2005 started Tarceva (not on trial) with Alimta. December 2005-seemed disoriented-Mri of Brain showed spread to brain. Dec. 05-Jan. 06-Had 11 WBR treatments Jan. 06-Went to Sloan Kettering for 2nd Opinion Feb. 06-Mri of Brain showed tumors shrunk/Pet Scan of Chest showed some enlargment of lung tumors Mar. 06-Trouble breathing-Went to emergency/put on ventilator/dx pneumonia because of aspiration/nothing to do with lung cancer. After 6 days in hospital was a little better and breathing ok. Chemo stopped. April 06-Gamma Knife for last tumor in brain. Very successful. Brain cancer should not be a problem. April 06-Oncologist told my husband that it was up to him if he wanted to do more chemo. He is scheduled to try Avastin Mon. April 25.

I have just joined this message board. My husband was diagnosed with NSCLC in Aug. 05. We are both so devestated and really have lost hope. The doctors have been negative (just a little bit of positive would have helped). Sometimes I feel very alone but I have been reading messages on this site and realize that there are so many others in this horrible situation. We went from a wonderful life to a very unhappy life. I cry all the time and feel so depressed. I so wish for our life back instead of this nightmare of appointments, hospital stays, etc. Sorry to be so down but I keep asking myself where this "quality of life" is. Everyone says to take each day one day at a time. Easy to say but not very meaningful when we face this every day.

I am new to this message board. My husband was diagnosed with Stage 4 lung cancer last August. It has been so devestating.The emotional ups and downs are almost more than I can bear sometimes. He is very depressed and angry (understandably). Our life has become nothing but dr. appointments, hospital stays and always waiting for the other shoe to drop. He has had some chemo treatments, full brain radiation and he is about to start another round of chemo on Mon. The doctor has not ever been positive in any way and sometimes I think my husband is sorry he did any treatment at all. We also flew to NY for a 2nd opinion but the dr. there really was not helpful or positive at all (contrary to all we had heard about Sloan). I think he did it for me because I just couldn't stand the thought of not at least trying anything we could. I don't think either of us has smiled or enjoyed anything for the last 9 months. If we had just had some positives we might have been able to have some quality of life and a little hope. Sorry to be so depressing but I am just so down. Judy