kimblanchard Posted June 28, 2003 Share Posted June 28, 2003 Hi Everyone, I am looking for an honest opinion on the situation with my husband. I realize that reading my post alone will not give anyone a complete picture of what he is going through but I feel like no one (doctors) really knows where he is at or they want to sugar coat his condition (or give him a death sentence). At least the people on this board are actually living with lung cancer or have taken care of a loved one with LC and can give me some honest insight. My husband has advanced NSCLC with adeno and squamous cells. His left lung has advanced disease (not sure if it is cancer or just cancer related). He has mets to his lymph nodes, liver and bones. He cannot breathe for an extended period of time w/o oxygen (as of this week). He has a really good appetite but he is afraid to eat too much because he has bad diarrhea. Other than getting up to use the bathroom, he is bed ridden. He is alert, has good color in his face and looks hydrated. If he wasn't in bed with an O2 tube, you wouldn't think he is sick based on looks alone. I am staying positive, hopeful and optimistic but I am getting the feeling from others that there is little hope. A social worker got involved at the hospital and suggested that we get hospice involved so that he can go home and be comfortable to die. I have read some very encouraging stories on this board and I definitely don't want to give up (and I don't want Chris to get to that point either). I am upset because I feel like the doctors, nurses, social workers and basically everyone is treating me like a child because of our age difference (23/50). I want what is best for Chris, I can handle whatever that is. Right now, I am taking care of him at home 24/7. I have read stories about people going out and about there normal lives after a chemo treatment, and Chris is in bed day and night (I don't feel very optimistic about that). Do we have any real honest hope here?? Has anyone here been this sick and it has turned around? I can handle the truth, whatever it is. Any insight is greatly appreciated. (I gotta go now, Chris is really hungry for KFC.....that can't be a bad thing ) Quote Link to comment Share on other sites More sharing options...
norme Posted June 28, 2003 Share Posted June 28, 2003 Christina, Each and every person that goes through lc goes through it somewhat differently. my father, brother and three dear friends never went through chemo and radiation as bad as my husband did and maybe that is good for my husband, because he seems to me to be getting a little better each week now and they never made it. As I recall, your husband has not had any treatments as yet so he is ill from the cancer in his body. If you are having a hard time believing the drs and nurses why don't you try for a second opinion if he will go for it. if it is as bad as they say then hospice is a terrific program. starting hospice is not a death sentence. they will tell you of the cases they have had that looked to be bad then some of their patients make a turn around and no longer need the care of hospice. I have witnessed this myself with a friend. I also have a friend who is a hospice nurse and she has told me stories of unbelievable turnabouts of patients. Hospice can give you some relief and there are times when each of us needs relief when the going gets ruff...... Will say a special pray for you and your husband. i feel for you for you are so young to have to deal with this so early in your life. GOD BLESS. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 28, 2003 Share Posted June 28, 2003 Christina, I am not sure but I think I get from your note that your husband is in the hospital? My thought is, if at all possible, get him home. Does he need to be in the hospital for something he can't get at home? My personal opinion is you stay in the hospital just long enough to get what you need, and then you go home to familiar and lovng surroundings.. I think a home atmosphere is much more conducive to feeling well and he may then want to try more movement, doing small things, etc. If he is really in very bad shape, I would go with Hospice. It is a wonderful organization. And some people have actually gotten well under Hospice! Good luck and God's blessings. Don Quote Link to comment Share on other sites More sharing options...
sophia88 Posted June 29, 2003 Share Posted June 29, 2003 I'd ask the doctor for a prescript for the diahrrea and maybe something for possible depression. That is great he has an appetite. Have you tried Ensure protein in wild berry flavor. I pour it over ice and my Dad loves it. (So does my 14 yr. old!!!)Get him home if you can...hospital always make my Dad's spirits low. (Too much doom and gloom there.) My Dad's oncologist keeps telling him it is treatment and one's own strength and will....your husband could be up and around. Determination abounds on this board. It is tiring for you I am sure, but you are not alone. We are all in this battle together. Email me anytime. Quote Link to comment Share on other sites More sharing options...
rayroy Posted June 29, 2003 Share Posted June 29, 2003 If pleurodesis works he will breath much better. He should experience much more relief and be able to walk more. My dad was told about hospice back in December, he eventually went on it in late April. He is still alive today, although slowly getting worse. Be positive, life can be extended, but look for other opinions and doctors that are willing to do something. If it wasn't for this board, I amy have quit looking for treatments a long time ago! Good luck Quote Link to comment Share on other sites More sharing options...
teresag Posted June 29, 2003 Share Posted June 29, 2003 You wrote: "He has a really good appetite but he is afraid to eat too much because he has bad diarrhea. " What is he eating? Too much Ensure, and other foods that don't contain fiber, can make diarrhea worse. And ironically, not enough things that don't contain fiber can do the same thing. So try modifying the fiber in his diet AND find out the cause of the diarrhea. If it's an infection, the diarrhea alone should not be treated (the cause should be treated), and stopping the diarhea can actually be detrimental. If it's a treatment side effect, the opposite is true. Best of luck to you both, Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 30, 2003 Author Share Posted June 30, 2003 Hi everyone, Chris came home from the hospital on Thurs evening. He was brought home by ambulance. I came home from the hospital earlier to help two respiratory specialists setup a hospital bed and oxygen. When Chris came home, the ambulance people brought him in on a stretcher and placed him directly on his bed. That was a difficult night. It made Chris depressed to see a hospital bed in our living room. It made everything real. He was REALLY cranky that night but has since gotten better (emotionally). I agree that it is better to have Chris (or anyone) home than in the hospital. The hospital can be very depressing. Earlier last week, I was actually afraid to be home alone with him though, because his breathing was so short. I had to call 911 a little over a week ago because he absolutley could not catch his breath. Luckily he recovered before the ambulence got here (fifteen minutes later!! ). As far as his diarrhea, I am going to speak to his doctor about that and hopefully get him a prescription. He has been eating ALOT lately. His appetite keeps me hopeful that he is doing better. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 30, 2003 Share Posted June 30, 2003 Christina, so glad your husband is home. I do think that is best. It can be harder on the caregiver, however, so be sure and take care of yourself as well. I speak from experience. Don Quote Link to comment Share on other sites More sharing options...
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