Where Are We?

SpouseDx0108
SpouseDx0108 Member Posts: 20
edited March 2014 in Caregivers #1
My husband has Stage IV colorectal cancer. He had a resection two years ago, chemo one year ago, bowel blockage in November, now another (partial) small bowel blockage. His doctor told me on the phone that the situation is "bad," and that the cancer is very aggressive. Mets to the lungs and peritoneum. There were two spots on his lungs in November, and now they say there are "multiple" lesions in the lungs and "belly." Oncology nurse/counselor said she would be surprised if there isn't mets to the liver as well.

Concerning the bowel blockages. The doctors won't commit to saying what caused the blockage. They said it could be that a loop of bowel is getting caught low in the pelvic area (as they feel is what happened the first time). This is a whole different situation, isn't it, than if the blockage is caused by tumors or bands? I mean, it still needs treatment, but if it's just getting "caught," the prognosis would be different?

The reason I ask is because I've read that bowel obstruction points to possibly 7 month survival time; and a second bowel obstruction, of course, makes the situation more grim.

It's hard to tell really how he's feeling. He's spent the most part of the last two years on the couch and in the recliner...in fact, he's always loved his recliner.

The oncology nurse said that my husband's oncologist is not one to ever give up, and he will most likely never recommend hospice. His primary surgeon may recommend it, though he's always painted a brighter picture than the reality has proven to be as well. I hate not knowing where we are.

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    ship lost in the fog
    After two years of fighting I know you’re exhausted, and now you’re in this frustrating place where you want some truth. It sounds like the nurse-counselor is being open, which makes it even more frustrating. From the sounds of it I would think that cure is not a realistic goal, and that efforts should be directed toward compassionate care. Both your husband and you deserve to be getting more support, regardless of a doctor's personal inclinations.

    When advanced metastatic disease starts moving fast in multiple sites, it is usually time to raise the white flag and get on with the very important business of letting go, which also takes time.

    Is this what you think, too? Instead of asking a proud doctor for a hospice referral, it is not unheard of to call a hospice agency directly, and let them handle the paperwork. Good luck, and hang in there. These are precious days ahead.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #3
    Questions
    I am sorry you are going through this very difficult time. I lost my husband Oct., 2009 after a 6 year battle with colon cancer. I think the oncologists sometimes have as hard a time letting go as the family and patient. We had to ask our oncologist to be "brutally honest" with us. I even had to ask specifically if it was time for hospice. Our oncologist had helped my husband buy 6 years of time, and he found it hard to "give up." I would encourage you to ask the difficult questions even if you don't really want to hear the answers. It sound like you have asked the nurse. Now it is time to ask the doctor. I firmly believe that it is better to get hospice involved as soon as you can. We only had them working with us for the last month. They can help in many ways. It was a relief to have a number I could call with questions and specific needs. They were particularly helpful with pain management and supplying such things as oxygen, medicine, and even a hospital bed. I called the on call nurse a couple of times the weekend before my husband died. I got answers that weren't sugar coated. Also, some doctors may not know that many hospices will allow continued palliative care now. They no longer require a patient to stop radiation, etc. if it is primarily to make the patient more comfortable.

    i also wanted to comment on the recliner. My husband loved his, too. He had back pain for the last couple of years, and even slept in his recliner for most of that time. He was so attached to it, that I had a hard time convincing him to try a hospital bed. He finally agreed to try it the last few days he was alive.

    I hope some of this helps. Please take care of yourself. Fay
  • SpouseDx0108
    SpouseDx0108 Member Posts: 20
    #4
    Barbara53 said:

    ship lost in the fog
    After two years of fighting I know you’re exhausted, and now you’re in this frustrating place where you want some truth. It sounds like the nurse-counselor is being open, which makes it even more frustrating. From the sounds of it I would think that cure is not a realistic goal, and that efforts should be directed toward compassionate care. Both your husband and you deserve to be getting more support, regardless of a doctor's personal inclinations.

    When advanced metastatic disease starts moving fast in multiple sites, it is usually time to raise the white flag and get on with the very important business of letting go, which also takes time.

    Is this what you think, too? Instead of asking a proud doctor for a hospice referral, it is not unheard of to call a hospice agency directly, and let them handle the paperwork. Good luck, and hang in there. These are precious days ahead.

    Thank you
    Thank you, Barbara. I keep thinking that I'll wait until "after [fill in the blank]," I'll have a clearer idea of whether it's time to call hospice. Currently, it's "after we get a CT scan" because he just started a new round of chemo. A CT scan in a month or two will show us whether the chemo is holding the progression at bay.

    Maybe I should call hospice directly as you've mentioned. Honestly, they may be more realistic and direct than anyone else I've talked to. I don't know how I can look my husband in the eyes and tell him that it's time for hospice. He doesn't know...I'm positive he doesn't know that the end could be that close.

    Today, he's outside walking around with his fanny pack. He didn't feel bad at all after his treatment yesterday. Days like today make me think that I'm getting all worked up over nothing. I just don't know.
  • SpouseDx0108
    SpouseDx0108 Member Posts: 20
    #5
    grandmafay said:

    Questions
    I am sorry you are going through this very difficult time. I lost my husband Oct., 2009 after a 6 year battle with colon cancer. I think the oncologists sometimes have as hard a time letting go as the family and patient. We had to ask our oncologist to be "brutally honest" with us. I even had to ask specifically if it was time for hospice. Our oncologist had helped my husband buy 6 years of time, and he found it hard to "give up." I would encourage you to ask the difficult questions even if you don't really want to hear the answers. It sound like you have asked the nurse. Now it is time to ask the doctor. I firmly believe that it is better to get hospice involved as soon as you can. We only had them working with us for the last month. They can help in many ways. It was a relief to have a number I could call with questions and specific needs. They were particularly helpful with pain management and supplying such things as oxygen, medicine, and even a hospital bed. I called the on call nurse a couple of times the weekend before my husband died. I got answers that weren't sugar coated. Also, some doctors may not know that many hospices will allow continued palliative care now. They no longer require a patient to stop radiation, etc. if it is primarily to make the patient more comfortable.

    i also wanted to comment on the recliner. My husband loved his, too. He had back pain for the last couple of years, and even slept in his recliner for most of that time. He was so attached to it, that I had a hard time convincing him to try a hospital bed. He finally agreed to try it the last few days he was alive.

    I hope some of this helps. Please take care of yourself. Fay

    Thank you & I'm Sorry
    I'm so sorry you lost your husband, Fay. Six years is SUCH a long time to fight this battle. We've been fighting it, in a sense, for three years...although we didn't get an actual diagnosis until Jan 08. It's a long, lonely road.

    Others, as well as you, have told me that I should get hospice involved as early as possible, because there are so many things they can do to help. If nothing else, I can see how nice it would be to have someone I could call with questions. And I realize, too, that there are so many more benefits to their services.

    Yes, the recliner :) Even before cancer, he didn't have a lot of energy and he spent a lot of time in it watching TV...which is why it's sometimes hard to tell where he really is on the journey.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    SpouseDx0108 said:

    Thank you & I'm Sorry
    I'm so sorry you lost your husband, Fay. Six years is SUCH a long time to fight this battle. We've been fighting it, in a sense, for three years...although we didn't get an actual diagnosis until Jan 08. It's a long, lonely road.

    Others, as well as you, have told me that I should get hospice involved as early as possible, because there are so many things they can do to help. If nothing else, I can see how nice it would be to have someone I could call with questions. And I realize, too, that there are so many more benefits to their services.

    Yes, the recliner :) Even before cancer, he didn't have a lot of energy and he spent a lot of time in it watching TV...which is why it's sometimes hard to tell where he really is on the journey.

    Your Husband
    Hi and welcome to our caregivers discussion board. I recently lost my dad to ec with mets to his liver on 3/9/10. There does come a time when you have to realize enough is enough. You do have to respect your husbands decision. Even if he has not come to this decision yet. Sometimes as caregivers we do. Yes I agree, you need to call hospice. Hospice will be able to help you and answer any questions you will have. They will teach you both how to prepare for the end. It is a very sad time, but it is also a happy time because you and your husband can now give up this loooong fight and be at peace with it all. God bless you and keep you at this time. Hopefully the drs and nurses will be honest with you. It took my dad's dr 16 months to tell him he was terminal and it was ok to give up. Once my dad got all of our blessings, he passed away peacefully at home in his recliner chair!
    Tina

Discussion Boards