In a daze

In a daze
In a daze Member Posts: 7
edited March 2014 in Caregivers #1
The title says it all. My love of 20 years was dx with Pancreatic 4B around May 13. After all the tests scans etc we were told he has about two months. One month is up. He has mets to the liver,omentum and mysentery. CEA 19-9 was 7,434. At first he decided not to do any chemo-since it was only to help with pain and would not extend his life. Some "friends" talked him into doing everything he can. Tomorrow he will have his third treatment of gemzar. He has lost 30 lbs, is exhausted,can hardly eat,has nausea and some vomiting following chemo. Sweats sore throat etc. I have gone thru the hate the world and everyone, feeling sorry for myself,and exhausted but realistic stage. I have been actually enjoying our time together and feel even closer and love him more if that is possible. he has had the gift of saying his good byes to dear ones and friends. However-I am starting to feel crazy and want to slap everyone that tells me (or him) we should be hopeful. Hopeful for what? that he doesn't cry from the pain or isn't embarrassed that he is loosing his dignity? I am worried he will die every time he sleeps and I am worried he will live in anguish for an extended period. This message board is the only place i feel i can say these things. Thanks

Comments

  • ilvnazoo
    ilvnazoo Member Posts: 3
    #2
    wish everyone would shut up
    I so understand where you are coming from. My dh was diagnosed almost 1 year ago with NSCLC. It has been such an up and down road that I want to scream. The stupid things otehrs say and no one has the right to talk you into treatment that just makes you sick and will not cure you.

    Sending hugs and wishes,
    Take care of yourself.

    Lisa
  • AnnaLeigh
    AnnaLeigh Member Posts: 187 Member
    #3
    It's understandable that you are in a daze
    I am sorry you are having to face the loss of your loved one. I am sure your "Love of 20 years" is also your partner, best friend, and the person you had planned to spend twenty more years with. Feeling the loss of your husband and the loss of the future you two had put together is enough to put any one in a daze.

    People who want to be helpful (but don't know how) can just say the darnedest, most insensitive things !!!!!! Sometimes this will just let you know which ones stop and think before opening their mouths and which ones don't.

    Feel free to respond to those whose fall in the category of non-thinking, motor-mouths with **"I know you want to be helpful and kind but that statement does not help us right now"** - or - **"Sometimes trying to cheer us up can actually have the opposite effect. So we will just be hopeful that you never have to experience what we are going through"**

    They really mean well but they have no idea what you are living through because there is no other experience like it in this world. Nor is there anything they can relate it to or find a commonality with.

    Sorry you are having to go through this but glad you are able to enjoy the time you have left with the person you hold dearest.
  • bingles
    bingles Member Posts: 120 Member
    #4
    I feel your pain....
    Lost my husband of 32yrs this past April...from lung cancer....two months from Dx to passing....it was a wild ride.
    He also declined any pallitive chemo...preferring to go home and be comfortable....and he was.
    Do you have Hospice involved? they are wonderful with pain management as well aa a boatload of other things.
    Try not to be too hard on the folks in your life....no one knows what to say in this situation..yet they feel compelled to say something...it just human nature....acknowledge that they too might be hurting...although surely not to the degree that you are.
    Blessings to you and your family
    Pat
  • junklady
    junklady Member Posts: 88 Member
    #5
    I know the dazed feeling
    I know that feeling. I'm in the same situation. My hubby has end stage laryngeal cancer. I cry a lot, I'm angry at the stupidity of others. The comments they make just shock the heck out of me. Some think this situation is funny. They are not walking in my shoes and living with cancer everyday. Cancer is just NOT FUNNY. They just don't get it. I'm like you, always checking to see if he is still breathing while sleeping. It does drive you crazy. I feel I've been living in a box that I can't get out of for the past 10 months, but somehow I manage to make it through everyday. I wake up and say to myself, "What will today bring?" My personal way of venting, besides here, is writing everyday in my journal. By writing I can say whatever I want and no one will ever know. Makes me feel better. You take care and vent whenever you want. I'll be thinking of you.
  • ruthelizabeth
    ruthelizabeth Member Posts: 138
    #6
    junklady said:

    I know the dazed feeling
    I know that feeling. I'm in the same situation. My hubby has end stage laryngeal cancer. I cry a lot, I'm angry at the stupidity of others. The comments they make just shock the heck out of me. Some think this situation is funny. They are not walking in my shoes and living with cancer everyday. Cancer is just NOT FUNNY. They just don't get it. I'm like you, always checking to see if he is still breathing while sleeping. It does drive you crazy. I feel I've been living in a box that I can't get out of for the past 10 months, but somehow I manage to make it through everyday. I wake up and say to myself, "What will today bring?" My personal way of venting, besides here, is writing everyday in my journal. By writing I can say whatever I want and no one will ever know. Makes me feel better. You take care and vent whenever you want. I'll be thinking of you.

    Oh, yes
    I have been there, too. Don was fortunate to have great friends who came and just talked old times and work, but there were a lot of people who found the most amazing things to say, mostly to me.

    Even people who wanted to be helpful could be terrically insensitive. In Dec. one of the waitresses at our favorite restaurant waited till Don was away from the table, took me by the shoulders and said, YOu have to get ready. He's going to die. And I said, you're not telling me anything I don't know. She meant well and I understood that. I was less happy with the woman very early in our struggle who asked if Don had life insurance. Maybe she was trying to be helpful, but it didn't feel that way to me.

    Yes, I did spend a lot of time listening to him breathe. I stayed close by until he finally got to sleep and then did what business I could at 1 or 2AM, sitting on the kitchen floor with the phone in my ear and one eye on the bed; it is possible to whisper forcibly and get some results.

    People helpfully offered me "miracle cures" with "guaranteed results." Others spoke disparagingly of the drs. we had and asked why we hadn't done this or that instead.

    I did my best to keep family informed and to suggest that they might want to come for his birthday, even if it was their only free weekend all month. I didn't want anyone to have permanent regrets. When they did come, they said, "Oh, he looks great!" Well, he didn't, but I let it pass. They said how glad they were that I was so strong. They urged me to think positive. It didn't make me feel better.

    It's a lonely world. YOu begin to wonder what surprises are lurking in the corner, waiting to pounce. YOu check the oxygen machine even though you can hear it working. You invent things to try to get some nourishment down them. People suggest milkshakes and you explain politely that he's lactose-intolerant; they don't understand. SOmehow they think that should all go by the boards in favor of getting weight on him as if cancer cancels out allergies. YOu vibrate between being good company for him and wondering what you'll do without him. People tell you how terrible their weekend was because they both had colds and it takes all you can do to say that if that's their only problem, they don't have one.

    It sounds as if you are dealing with the situation as well as anyone can. Know that he loves you and is grateful for your steadfast care. Go punch the shower curtain or scream while the water is running if you need to relieve the emotions. Remind yourself that you are doing a good job for someone who loves you dearly.
  • In a daze
    In a daze Member Posts: 7
    #7
    ruthelizabeth said:

    Oh, yes
    I have been there, too. Don was fortunate to have great friends who came and just talked old times and work, but there were a lot of people who found the most amazing things to say, mostly to me.

    Even people who wanted to be helpful could be terrically insensitive. In Dec. one of the waitresses at our favorite restaurant waited till Don was away from the table, took me by the shoulders and said, YOu have to get ready. He's going to die. And I said, you're not telling me anything I don't know. She meant well and I understood that. I was less happy with the woman very early in our struggle who asked if Don had life insurance. Maybe she was trying to be helpful, but it didn't feel that way to me.

    Yes, I did spend a lot of time listening to him breathe. I stayed close by until he finally got to sleep and then did what business I could at 1 or 2AM, sitting on the kitchen floor with the phone in my ear and one eye on the bed; it is possible to whisper forcibly and get some results.

    People helpfully offered me "miracle cures" with "guaranteed results." Others spoke disparagingly of the drs. we had and asked why we hadn't done this or that instead.

    I did my best to keep family informed and to suggest that they might want to come for his birthday, even if it was their only free weekend all month. I didn't want anyone to have permanent regrets. When they did come, they said, "Oh, he looks great!" Well, he didn't, but I let it pass. They said how glad they were that I was so strong. They urged me to think positive. It didn't make me feel better.

    It's a lonely world. YOu begin to wonder what surprises are lurking in the corner, waiting to pounce. YOu check the oxygen machine even though you can hear it working. You invent things to try to get some nourishment down them. People suggest milkshakes and you explain politely that he's lactose-intolerant; they don't understand. SOmehow they think that should all go by the boards in favor of getting weight on him as if cancer cancels out allergies. YOu vibrate between being good company for him and wondering what you'll do without him. People tell you how terrible their weekend was because they both had colds and it takes all you can do to say that if that's their only problem, they don't have one.

    It sounds as if you are dealing with the situation as well as anyone can. Know that he loves you and is grateful for your steadfast care. Go punch the shower curtain or scream while the water is running if you need to relieve the emotions. Remind yourself that you are doing a good job for someone who loves you dearly.

    Thanks to everyone
    I feel so much better after reading all the responses to my rant. Today I even used the "hope you never have to experience this" line. While we were at chemo a lady stopped me and said she could see the love between DH and me. She had been a caretaker for her DH with mesothelioma nine years earlier. She has had recurring breast cancer for six yrs.She told me it was easier having cancer than taking care of her husband.I just hugged her and thanked her for talking to me. I am feeling better and more capable of responding to comments rather than biting my tongue and wanting to be reactive. It is such a saving grace to have cyber friends that actually relate to my experience of the world right now.
    Elizabeth
  • halsons
    halsons Member Posts: 76
    #8
    we all know what you are going through
    I just like the others know where you are coming from. I lost my husband and best friend this year on Jan 12 to esophegeal cancer. We were married for almost 25 years and have four kids. I know everyone here can tell you important stuff to do but one thing I would like to tell you is tell him constantly how much you love him and don't hold back on anything you want to say to him. My husband and I talked about everthing even what we both wanted for burrial things and I am so glad we did. My kids thought we were crazy but I wanted to have him give a say in what he wanted and help me get mine ready as well. We laughed and cried and he even told me he was sorry he didn't treat me as good as he could and how much he loved me and that I was his everything. That was the best day we had in a long time. Two days later he passed away so I am so glad we had that important day and talk. I don't regret anything I didn't say and I have to words that he told me to keep me going. So please don't leave anything unsaid and do what he wants. We are all here for you. In my thoughts and prayers. Haley

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