I am SOOOOO sorry. Oh my, how are you doing? Is Dan home now? Why is Dr. W saying this - what do the CAT SCANS show? How is Dan - is he in a lot of pain?
You too can get us a message via Julie or Angie if you need anything - if Dan needs someone to talk to my husband will talk to him as he has the same stage of the same cancer. I am so very sorry Cheryl.
Hi, Mary. Yeah, Danny is home and we have a hospital bed in the living room and I can barely go in there without crying. I miss him so much already. He sleeps all the time and yesterday we went to see the Dr. The trip wore him out. He slept for hours and I gave him extra morphine to help us both rest.
He had two Gemzar treatments and then the Dr. said it wasn't working and why put him through it for nothing. We took his advice and got Hospice involved. I feel so darn disgusted with my self because I told them I wanted him here but I wanted him moved when the end was near so he doesn't die in my house. I would never be able to stay here knowing he died here. I know it's a stupid thing but that's the way I feel.
He hasn't eaten since the Dr. told him the tumor won't stop growing and I think he has given up. My cat gave up and I found him sleeping in the litter box. What the two have to do with each other, I don't know...
I'm sorry, I'm rambling on.
I hope to God that your husband keeps doing well, Danny never had a remission.
Someone old me that the Bible says man is promised 65 years and Danny should demand his.
You are should not be disgusted with yourself!(okay picture me stamping my foot here) Many said that mom was selfish for going into the hospice and that we should feel selfish for not being able to make her stay home. We were not selfish but realistic. So you can not win. It is you and Dan that have to make the choice and know that it is the best for you. Mom's biggest concern with the hospice was that she was worried that her and dad would no longer be married. Also Cheryl check with the hospice and make sure that you can sometimes stay the night. It will become more important to you. Also see if you can order the what mom called the daily specials, or meals. That way if you do not want to leave to go for a meal that you do not go hungry. But it is also important that you do get away for a bit each day. It is okay to cry with Dan. There is always so much more to say and I wish I could do more...... but remember, both you Cheryl and Mary, my thoughts and prayers are with your families both.
Cheryl, I have been following your journey and realize how hard this is, I have been through this a number of times with family.
May I make one suggestion...I would look at other medications for pain relief. I can not understand why the Doctors have not mention the Fentanyl patch, then use the morphine for breakthrough pain, of have a morphine pump for Dan, that way he can control how much he needs.It very hard to watch someone we love in pain and everything that the Doctors can do to relieve this should be done. God bless you both.
Hello everyone. Danny is now in the Hospice house for Pain relief. They are taking him off morphine and putting him on Methadone. The Dr. at the hospice house told me the Cancer was also in his liver. The regular
Dr. may have told Danny this but I never knew. The hospice house is going to keep him for a few days and then he will come home. At least thats what they say, but who knows. I can't believe all this...Pray for us to have strength.
Cheryl
This has been an awful day. The Hospice Dr. told me that Danny does much better and is in less pain when I'm not there. He is so worried about me that he suffers just looking at me. She then said that she was sure he has more than just a 'few days' if there are things we need to tell each other about how we feel. Like knowing each other since we were 11 and 12 years old counts for nothing. My God I always thought Hospice was for comfort not to bring us more misery. Sorry, but I am so upset that I can't even think. Think twice about Hospice...
My heart goes out to you and Dan. Now is this hospice a part of the place our husband's go to for lung cancer care? OR is this some outside organization? I am lost when it comes to hospice. How did you find them?
WOW...I am sure Dan wants you there w/him - that nurse is full of it. You have known each other since 11-12 years old? Wow...that is a long LONG time. I am sad for you both.
On Bob's last CT it showed cysts on his liver - I believe they are cancer, but it has not been "made official" as they are small - but - I read the report myself. It told me the cancer is indeed in his adrenal gland as I KNEW all along yet Dr. W had such a laid back attitude about. GRRR Honestly I think he is too darn laid back!!
Is Dan coming home? Your previous post indicated that he may be home in a few days, but this new one says they are implying he only has a few days left? SHOCKING how cold hospice is...I will NOT have Bob put through that - no way. He will stay here w/me as he does not want to die at the hospital - he wants to die in our bed in my arms. THAT will be hard...VERY hard.
I am so very sorry Cheryl.
Hang in there hon,
Mary
[This message has been edited by MaryP (edited 12-13-2002).]
[This message has been edited by MaryP (edited 12-13-2002).]
Cheryl, I don't understand where this Hospice is coming from, I volunteered for Hospice here in Canada and have never seen anything other then compassion for patient or their family.
If I am reading this right they are asking you not to visit because at those times Danny is in pain, is that right? Well I for one would not allow anyone to tell me where to be while my husband is so sick. When my hubby was in the hospital I spent every waking hour I could with him, other then working and sleeping.
No one has the right to take this time away from you.
I sure hope tomorrow is a better day.
Hi Cheryl, I am so very sorry for the pain, both physical and emotional that you and your husband are going through. I haven't posted on this board for quite a while. However, if I can be of any help to you please let me know. My beloved husband lost his battle with nsclc on March 30th. He was under hospice care at home for a month and a half. I have too say, that the hospice organization here was wonderful. My husband would not accept having a home health aid, but loved his nurse. The hospice staff helped me as much as him. If you aren't satisfied with the nurse try calling the hospice office and requesting another nurse. It is so hard to see the love of your life slip away, so do what you know in your heart is right for you and your husband. Don't let anyone tell you differently. God Bless You Both. I am here for you.
Today, I wasn't able to go to the hosice house to see Danny and when I talked to him he was so weak I could barely hear him. Mary P. no this Hospice is part of our insurance. The SWGH hospice is what I wanted but no such luck. This is called Hospice of the Western Reserve. I guess it is supposed to be the best but I would have to drive 71 to 90 past Dead mans curve and today with the traffic from the Browns I got sick just thinking about going.
I am going to call and tell my ins. to keep the darn Hospice and I will take care of him myself with plain old home health helping out.
No one should have to die this way. NO ONE. I don't know how any one can get through something like this and still function as a normal person.
Thank you all for letting me cry on your shoulders.
Cheryl
I am so sorry you are having such a rough time w/that darn hospice house. Shame on them. I am also very sorry Danny sounded so weak. I agree with you - I too would pull my Bob OUT of that type atmosphere and get him home with some nurse's helping me out. NICE nurse's. NO ONE SHOULD have to die that way. How utterly sad...
OH I am terrified of deadman's curve. I try to avoid it when I can. My one doctor is out East and I have to take it when I see her - but that is the ONLY time I will take it. Yes the traffic from the game would have been hectic.
How much involvment does Dr. W have in all of this now? Is he still Dan's doctor, or did Dan get a new one? Bob is seeing him Tuesday for labs/chemo/etc. I made up a nice basket of candles (I have my own candle company and I make candles for a living) for the staff and a special one for Dr. W and one for Julie. Julie took one of our dog's, Annie. Annie is a 3 pound Maltese. When we put the house up for sale and moved we had to make decisions as to where to place our dog's as we are only allowed one here - well we saw other tennant's w/two so they said we can have two also so I bought Bob a puppy for his B-Day last month. It was so sad losing three of our family dog's. CANCER SUCKS. I lost my home, three of my dog's, my health insurance as Bob quit his job and he is on SSD and he gets Medicaid. I am left w/out a thing. CANCER SUCKS.
You hang-in there and be sure to get some rest. It IS so hard - I barely function now as I have an anxiety disorder and I cannot go too many places due to it. I got a prescription for Paxil to help me overcome that and help me cope w/my husband's illness...I did not start it yet as I am scared of med's...so I too would like to know how the heck one CAN function under these circumstances in a normal fashion - one just cannot. We must try each day to get through JUST THAT DAY and take life as such - that is the way I do it.
Take care Cheryl and thank you for posting - I think of you and pray for you and Dan.
bravo for you. take him home, it will be alot of work, but you can do it. insurance may pay for a nurse to come to your house. you are right, no one deserves that. it will mean everything to you and your husband. it has been a little over a month since my dad passed, and if i had had the opportunity to hold his hands during the past few weeks, i wouldn't have passed on it. get him home, cherish every moment, and keep up the fight. i know he will have some comfort in being home, and miracles do happen. i am thinking of you and praying for you and your husband. get him home, get him home, get him home, and hold his hand, and comfort him and whisper to him while he sleeps. you need this and so does he. get that nurse. please keep us updated.
I did it. First I called the Hospice Social worker and told her what the Dr. there said. She told me that she sees him almost every day and anytime any one enters the room he gets restless. She headed down there and got an ambulance to bring him home. I threatened to come in a squad car, and my brother would have done it. In the mean time I also let our insurance co. have it. When our case worker called me back it was set up that I decide where he goes and what treatment means a trip to the hospital. I found out that he could have gone to Metro or St. Johns West Shore. (Mary knows where these are.) Much easier drives and way closer. So they lied...
The Cancer Dr.(W.) is really only like a consultant now.
I have been bugging the heck out of Danny all day though. I told him I just have to touch him. He is in better spirits. I think having a Dr. tell you that you weren't going to die in the next few days meant to him that he probably had a week. My God how heartless could one person be. The Social Worker spent two hours with us and said we probably could read each others minds by now.
Any way I needed the push you guys all gave me and if I can return the favor, just ask.
Cheryl & Danny.
oh, i am so relieved. good for you, good for you, good for you. this is the thing, cheryl, you have to take the initiative. stay by your husbands side, he will be so happy to see you whenever he is awake. be constantly aware of his symptoms. this is your job now, but i know you can do it. all you can do for me is keep me posted. i am thinking of you. and am hoping for the best. mirrell
Dear Cheryl,
HI, I want to tell you something. I think that you are a very strong woman. I have read most of your postings and you have done all that you can to make dan comfortable. 2 months ago I lost my mother to stage iv lung cancer. When we found out about it, they gave her 3-6 months to live. But she was a fighter, she lived for a year and a half. I am only 20 and I have a brother who is 13 and a sister who is 17. My dad is not taking it well, he is very depressed and can hardly smile. She died 5 days before my birthday. My mother was my best friend and now she is gone. But she will always be with me. THose who we have loved will always bw with us no matter what. Remember that love is a precious thing and that one day we will be together again in heaven with god. I am so sorry for your and dans pain, i will pray for you,
love kd82
Cheryl! I was very shocked to hear of what the nurse said to you. Sometimes the nurses, are so used to this road that they will say what comes out of their brains without actually thinking about it. We had one nurse like that and Dad had her changed from mom's room on her shifts. Mom was always restless to when people came to visit. I think in some way, they too are nervous and wish to make you feel more comfortable. Towards the end mom was worried about coffee and always having it ready. She would also, after being attached to a alarm, she would often try and get out of bed and make it to the door. This was mom, a way that I will always remember her. Cheryl, remember too that you do not need to fill each and every moment with talking. Sometimes just sitting and listening to a cd did much to relaxed mom and made her feel more comfortable with visitors.
You must remember to to look after yourself! I did not and I relasped a bit with my kidneys which made me sicker in the end. I know that at the time, I was driving 18 hours to see mom, and staying with her did not seem at all draining.... but than I started staying the nights at the hospice and at least half the day then trying to look after my children the other half and sleeping. Needless to say, it was all very draining and I did not actually see that until after the funeral when I could not even drive the 9 hours home. Good luck Cheryl, my thoughts are with you and I watch daily for updates.
Hospice 
I am SOOOOO sorry. 
