I am just plain scared

gerryo
gerryo Member Posts: 50
in Colorectal Cancer #1
As my husband's caregiver I am always afraid. Am I doing the right thing encouraging him to continue his chemo or should I just let him decide? He has CRC with mets to liver, gallbladder, pancretis, lungs and god know where else. Oh yeah, he also has a horrible adbominal fistula that no one will even keep an eye on. CEA has been creeping up, but onc says his pet scans are stable. Do you let nature take its course or continue to fight.......possibly for a lost cause. Quality or Quinity? He depends on my opinions to help make his decisions. Am I only thinking about myself. I am so confused and scared trying to figure out what is right.

GerryO

Comments

  • buckeye2
    buckeye2 Member Posts: 428 Member
    #2
    I had to have a heart to
    I had to have a heart to heart with my husband regarding this very issue as he wanted me to be the decision maker regarding his medical care. That is an unfair place to put a spouse and needs to be said as I am sure he is not even aware that he is doing it. Decisions regarding quality or quantity are his and his alone. You take on the role of head cheerleader and support him. I hope that things begin to look up for you are your husband. Lisa
  • John23
    John23 Member Posts: 2,122 Member
    #3
    GerryO -
    GerryO -

    Lisa's right! It should be up to the one with the problem to
    make their own life decisions.

    We all were born with the unique ability to survive, just as all
    animals, fish, birds and plants. Yeah, I know that sounds corny,
    but it's life as life is.

    We each have an inner sense that allows us to be able to discern
    what will harm us, and what will not harm us. We alone, can hear
    our body's directions, not a physician, nurse or caregiver.

    But as a caregiver, or spouse, one should provide as much
    information as possible regarding -all- options, so an informed
    decision can be had.

    And it should be of utmost importance to get a second and
    third opinion regarding the results of tests taken, and the various
    options available.

    With something as serious as a terminal disease, all options
    and all opinions should be explored and weighed. Listening
    to only one opinion of a valid path to take, simply will not do.

    You can do your spouse the most good, by making appointments
    with a colorectal surgeons that are not of the same group or
    organization, and listen to what they have to say.

    Lastly, the decision to do chemo, radiation, or an "alternative",
    or to do both simultaneously, needn't be as big a choice as
    some make it. Many of us have battled cancer using other
    means, and are still here to talk about it.

    There are many options and various forms of treatment, but
    you won't know about them if you isolate yourself to one
    physician's opinion. And you won't hear about "alternatives",
    unless you do some serious research.

    Check the "profiles" of the people that contribute to this board,
    and you might find some interesting data regarding their choices
    and the results.

    Information is where you look for it; with a life-threatening
    terminal illness, there is nothing more important than knowing
    all the options available.

    My very best wishes to you both!!

    John
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #4
    Decisions
    You know you just have to do or say what you feel is right, which in turn leads to a discussion between the two of you, which leads to where he wants to be, with chemo or without, a lengthy discussion can lead to a decision, which can always be reversed. You have to discuss things like, is he staying on chemo just for you, because that is what he thinks you want, or is he staying on chemo because HE WANTS to hang around a little longer in spite of the side effects, so many questions you need to ask and answer to each other.
    In the end it is his decision and his alone, but that doesn't mean that you shouldn't have input in a discussion with him about the pros and the cons, so that he can make a decision that you can both be prepared to handle.
    Winter Marie
  • gerryo
    gerryo Member Posts: 50
    #5
    herdizziness said:

    Decisions
    You know you just have to do or say what you feel is right, which in turn leads to a discussion between the two of you, which leads to where he wants to be, with chemo or without, a lengthy discussion can lead to a decision, which can always be reversed. You have to discuss things like, is he staying on chemo just for you, because that is what he thinks you want, or is he staying on chemo because HE WANTS to hang around a little longer in spite of the side effects, so many questions you need to ask and answer to each other.
    In the end it is his decision and his alone, but that doesn't mean that you shouldn't have input in a discussion with him about the pros and the cons, so that he can make a decision that you can both be prepared to handle.
    Winter Marie

    First thanks to all who
    First thanks to all who replied. Really needed to hear from someoe. His biggest problem is the fistula. I am trying to set him up with a interventional radiologist at Emory. He specializes in adbominal plugs. My husband never has had an optimistic view on life and I have always been the cheerleader in our family. But he does not want to live with the fistula. So if the fistula cannot be closed he wants to discontinue his chemo. I cannot wrap my head around that since life is so precious and the fistula, in my opinion, is just a bump in the road. I do all his nursing care. How do I make him understand life is so much more important then wearing a bag because you have a fistula. I am just venting, as I know the decision is always his. Thanks again. Gerry
  • gerryo
    gerryo Member Posts: 50
    #6
    herdizziness said:

    Decisions
    You know you just have to do or say what you feel is right, which in turn leads to a discussion between the two of you, which leads to where he wants to be, with chemo or without, a lengthy discussion can lead to a decision, which can always be reversed. You have to discuss things like, is he staying on chemo just for you, because that is what he thinks you want, or is he staying on chemo because HE WANTS to hang around a little longer in spite of the side effects, so many questions you need to ask and answer to each other.
    In the end it is his decision and his alone, but that doesn't mean that you shouldn't have input in a discussion with him about the pros and the cons, so that he can make a decision that you can both be prepared to handle.
    Winter Marie
  • karguy
    karguy Member Posts: 1,020 Member
    #7
    gerryo said:

    First thanks to all who
    First thanks to all who replied. Really needed to hear from someoe. His biggest problem is the fistula. I am trying to set him up with a interventional radiologist at Emory. He specializes in adbominal plugs. My husband never has had an optimistic view on life and I have always been the cheerleader in our family. But he does not want to live with the fistula. So if the fistula cannot be closed he wants to discontinue his chemo. I cannot wrap my head around that since life is so precious and the fistula, in my opinion, is just a bump in the road. I do all his nursing care. How do I make him understand life is so much more important then wearing a bag because you have a fistula. I am just venting, as I know the decision is always his. Thanks again. Gerry

    First
    First your husband should not give up.Wearing a bag is no problem,you get used to it,and sometimes it is convenient,like when you get the runs,a friend at work said his is no problem,I have never had a problem with mine,and he should never give in to an evil disease ,and should fight it no matter what he thinks.I beat colorectal cancer,and now they tell me I have liver cancer with a golf ball size tumor,and I refuse to give up,or die yet,I am not going to let it win,and I hope your husband doesn't either.I know it is his decision,but I hope he never ever gives up.Good luck.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #8
    gerryo said:

    First thanks to all who
    First thanks to all who replied. Really needed to hear from someoe. His biggest problem is the fistula. I am trying to set him up with a interventional radiologist at Emory. He specializes in adbominal plugs. My husband never has had an optimistic view on life and I have always been the cheerleader in our family. But he does not want to live with the fistula. So if the fistula cannot be closed he wants to discontinue his chemo. I cannot wrap my head around that since life is so precious and the fistula, in my opinion, is just a bump in the road. I do all his nursing care. How do I make him understand life is so much more important then wearing a bag because you have a fistula. I am just venting, as I know the decision is always his. Thanks again. Gerry

    Oh heck
    Is that what he's upset about; a bag?? When I was given 4 to 6 months to live, I was on my knees saying "Hey Lord, if they can fix it by cutting everything out, I don't care if I have to wear a bag to live, I JUST WANT TO LIVE, anything, please Lord."
    I don't know how to have you convince him of it though, but by golly, there's plenty out there wearing bags and happy to be walking the earth and being with their loved ones. Maybe he could be persuaded to have a conversation or two with them?
    My heart goes out to you Gerry.
    Winter Marie
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #9
    gerryo said:

    First thanks to all who
    First thanks to all who replied. Really needed to hear from someoe. His biggest problem is the fistula. I am trying to set him up with a interventional radiologist at Emory. He specializes in adbominal plugs. My husband never has had an optimistic view on life and I have always been the cheerleader in our family. But he does not want to live with the fistula. So if the fistula cannot be closed he wants to discontinue his chemo. I cannot wrap my head around that since life is so precious and the fistula, in my opinion, is just a bump in the road. I do all his nursing care. How do I make him understand life is so much more important then wearing a bag because you have a fistula. I am just venting, as I know the decision is always his. Thanks again. Gerry

    Dear Gerry
    I wasn't real keen on having to wear a bag myself, but found the following very helpful in understanding that live can still be good.

    One of the best resources I had, other than my ostomy nurse, was the book “The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies [Paperback]
    Barbara Dorr Mullen (Author), Kerry Anne McGinn RN BSN OCN (Author).” It was loaned to me by my ostomy nurse, but you can buy your own copy on Amazon.com or probably at your local book store.


    I highly recommend it. One of the authors actually had an ostomy, so not just 'theory'.

    Marie who loves kitties
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #10
    Decisions
    I think you need to do all you can to support him and make things easy for him (as much as you can), but in the end he needs to make the final decision about what to do. Praying for you both.

    *hugs*
    Gail
  • coloCan
    coloCan Member Posts: 1,944 Member
    #11
    tootsie1 said:

    Decisions
    I think you need to do all you can to support him and make things easy for him (as much as you can), but in the end he needs to make the final decision about what to do. Praying for you both.

    *hugs*
    Gail

    "Have bag, will live":
    For me, its as simple as that.......steve

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