New here, but not new to cancer.

My husband has Stage 4 colon cancer with extensive mets to liver and lungs. He had resection of the primary tumor in April and began chemo in May. his treatment is palliative, but so far his response to chemo is good. He is feeling pretty good and side effects are less than what most people experience. I am a long-term breast cancer survivor with the BRCA genetic problem. i have lost my dad, uncle, and sister to cancer, not to mention my own boobs and other body parts. Lots of loss and grief in my world due to cancer, but nothing compared to what I am about to lose with my husband. 

I am a highly educated cancer patient and now, cancer advocate and caregiver for my husband. My life sucks and I think it is okay to say that. It's also okay to say that I have anger, sadness and some anxiety about the future. The problem is my husband thinks all negative thoughts and feelings are unacceptable. He is not in denial about his illness or his odds. He is a nice guy and everyone, well pretty much everyone, loves him. I love him too, but right now I do not like him very much.

I have suggested to him that we need grief counseling. 

I would like to hear from other spouses dealing with terminal (I am not allowed to use that word around him) colon cancer caregiving issues like these. 

And just so you know, I have plenty of friends, a good family, A good life. I just don't want the constant conflict and tension between my spouse and I to wreck what precious little time he has left. 

Comments

  • John23
    John23 Member Posts: 2,122 Member
    Not intending to be rude…..

    Re:
    “The problem is my husband thinks all negative thoughts and feelings are unacceptable. He is not in denial about his illness or his odds. He is a nice guy and everyone, well pretty much everyone, loves him. I love him too, but right now I do not like him very much……. I have suggested to him that we need grief counseling.” 

    “Grief counseling” for the “couple” (actually, for all involved) isn’t always a bad idea, or a good idea; grief or stress counseling can be of help to those that sincerely feel the need for it, but for many others it can be counterproductive. Any counseling is a very strict and personal choice, and the decision to undergo such “treatment” should be left to each individual involved.

    From what you’ve so eloquently posted, it appears that your spouse is handling it all quite well. There is no reason to necessitate “couple” counseling if only one of the individuals in the relationship is experiencing an uncomfortable situation.

    While it’s true, that one’s attitude may be disturbing to another, it is the one that is “uncomfortable” that would benefit most from counseling. You can’t change another person’s actions, but -you- may be able to change the way -you- cope with the situation.

    Can the answer be found in the question:
                          “why are you acting like it doesn’t matter”?

    We all suffer when our loved ones suffer; we can be of most help if we can cease dwelling on our own suffering.

     

    Live life today - for today; harvest what it offers.

     

    Above all, be well.

    John

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hi Dolly

    I am a survivor of cancer and was also a care giver to my sister who had stage 4 uterine cancer, so I have a bit of experience at this as well.  My sister died about 18 months after diagnosis.

    For me being a caregiver was not just seeing to her physical needs but also her emotional needs.  Being well educated, I knew the probable outcome for my sister from day one, but I did not insist that she accept it as the only possible outcome.  I was honest with her when she asked questions.  We never talked in terms of her being terminal (negative), but in terms of treatment giving her more time (positive).  Both were true, but the positive gave her the opportunity to better enjoy the days she had.

    It sounds to me as if your experiences with cancer have made you very "matter of fact" and you feel your husband must see his prognosis through your eyes.  You need to understand that each of us must find our own way to deal with the situation.  You say your husband is not in denial.  Accept that.  If he choses to not dwell on the negative, and remain as positive as possible, let him.  What does it hurt? 

    Counseling sounds like a good idea, for you.  It may help you come to terms with his attitude.  You need to find a way to be supportive of his emotional needs, even when that is different from your own sense of what is to come.

    All of us are going to die.  Some will go suddenly from an accident or undiagnosed illness.  For those of us with a cancer diagnosis, we just know ahead of time what may be the cause of our passing.  That does not mean that we must dwell on it daily or let it impact how we live our last days, however many that may be.

    Now is the time to support your husband in his desire to have positive days.

    Wishing you both the best,

    Marie who loves kitties

  • Dotty2121
    Dotty2121 Member Posts: 3
    John23 said:

    Not intending to be rude…..

    Re:
    “The problem is my husband thinks all negative thoughts and feelings are unacceptable. He is not in denial about his illness or his odds. He is a nice guy and everyone, well pretty much everyone, loves him. I love him too, but right now I do not like him very much……. I have suggested to him that we need grief counseling.” 

    “Grief counseling” for the “couple” (actually, for all involved) isn’t always a bad idea, or a good idea; grief or stress counseling can be of help to those that sincerely feel the need for it, but for many others it can be counterproductive. Any counseling is a very strict and personal choice, and the decision to undergo such “treatment” should be left to each individual involved.

    From what you’ve so eloquently posted, it appears that your spouse is handling it all quite well. There is no reason to necessitate “couple” counseling if only one of the individuals in the relationship is experiencing an uncomfortable situation.

    While it’s true, that one’s attitude may be disturbing to another, it is the one that is “uncomfortable” that would benefit most from counseling. You can’t change another person’s actions, but -you- may be able to change the way -you- cope with the situation.

    Can the answer be found in the question:
                          “why are you acting like it doesn’t matter”?

    We all suffer when our loved ones suffer; we can be of most help if we can cease dwelling on our own suffering.

     

    Live life today - for today; harvest what it offers.

     

    Above all, be well.

    John

    Thanks

    i think I wrote this post with nice words, but little clarity. I appreciate your comments. The last thing I want is to add to my husband's suffering. 

  • Dotty2121
    Dotty2121 Member Posts: 3

    Hi Dolly

    I am a survivor of cancer and was also a care giver to my sister who had stage 4 uterine cancer, so I have a bit of experience at this as well.  My sister died about 18 months after diagnosis.

    For me being a caregiver was not just seeing to her physical needs but also her emotional needs.  Being well educated, I knew the probable outcome for my sister from day one, but I did not insist that she accept it as the only possible outcome.  I was honest with her when she asked questions.  We never talked in terms of her being terminal (negative), but in terms of treatment giving her more time (positive).  Both were true, but the positive gave her the opportunity to better enjoy the days she had.

    It sounds to me as if your experiences with cancer have made you very "matter of fact" and you feel your husband must see his prognosis through your eyes.  You need to understand that each of us must find our own way to deal with the situation.  You say your husband is not in denial.  Accept that.  If he choses to not dwell on the negative, and remain as positive as possible, let him.  What does it hurt? 

    Counseling sounds like a good idea, for you.  It may help you come to terms with his attitude.  You need to find a way to be supportive of his emotional needs, even when that is different from your own sense of what is to come.

    All of us are going to die.  Some will go suddenly from an accident or undiagnosed illness.  For those of us with a cancer diagnosis, we just know ahead of time what may be the cause of our passing.  That does not mean that we must dwell on it daily or let it impact how we live our last days, however many that may be.

    Now is the time to support your husband in his desire to have positive days.

    Wishing you both the best,

    Marie who loves kitties

    Thank you

    marie who loves kitties,

    i love kitties too. And my husband. Thanks for responding.

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Dotty2121 said:

    Thanks

    i think I wrote this post with nice words, but little clarity. I appreciate your comments. The last thing I want is to add to my husband's suffering. 

    You're fine, Dotty.

    You didn't come across as though were you wanted to add to his suffering, but as a wife who is concerned and filled with love. Its a hard road to travel, as a patient (as you well know) and caregiver.  

    Sue - Trubrit

  • John23
    John23 Member Posts: 2,122 Member
    Dotty2121 said:

    Thanks

    i think I wrote this post with nice words, but little clarity. I appreciate your comments. The last thing I want is to add to my husband's suffering. 

    Suffering

    Sometimes, suffering can be so internal that we have trouble discerning it from a simple lackadaisical attitude.

    You’re suffering, how can you not be? And I’m certain your spouse is suffering as well. It’s worse than watching a train wreck in slow motion since you are: A. In the train, and B: You can’t judge the speed you’re traveling at.

    We all feel the pain, make no mistake about it. Those of us here, and all those that ever were here, all understand.

    And I think I can speak for all of us when I type the words:

    I am so, so sorry you are here.

    (I wish I had a magic wand)

    My very sincere best wishes for you and yours.

     

    John

  • vtspa6
    vtspa6 Member Posts: 172
    My husband does not feel like

    My husband does not feel like he has cancer even tho the rectal cancer is stage 4 with mets to lungs.  Before chemo, his only complaint was he could not have a bowel movement.  Thats it!  Actually it is the chemo that has him down, not the cancer itself.  He can breathe fine even with 30 spots in his lungs and the colostomy bag took care of the bowel movement problem.  He tells everyone that he feels fine and he doesn't believe anything is in his lungs.  In fact, he has mentioned he would consider stopping chemo (very scary thought!)  That being said, maybe this is how your husband is feeling.  Yes, there are times when I want to shake him into reality that stage 4 isn't a cold symptom, but I try to look at it in his shoes.  For me, I think I am more scared of the future than right now.  I know that something bad will happen but I don't know when and to what degree. 

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    vtspa6 said:

    My husband does not feel like

    My husband does not feel like he has cancer even tho the rectal cancer is stage 4 with mets to lungs.  Before chemo, his only complaint was he could not have a bowel movement.  Thats it!  Actually it is the chemo that has him down, not the cancer itself.  He can breathe fine even with 30 spots in his lungs and the colostomy bag took care of the bowel movement problem.  He tells everyone that he feels fine and he doesn't believe anything is in his lungs.  In fact, he has mentioned he would consider stopping chemo (very scary thought!)  That being said, maybe this is how your husband is feeling.  Yes, there are times when I want to shake him into reality that stage 4 isn't a cold symptom, but I try to look at it in his shoes.  For me, I think I am more scared of the future than right now.  I know that something bad will happen but I don't know when and to what degree. 

    Simon & Garfunkel

    This reminds me of the line in the Simon & Garfunkel song 'Sounds of Silence' - Silence like a Cancer grows.  They call Cancer the siltent killer for a reason. 

    Just before the CT scan that picked up my liver met, I felt absolutely fantastic. I even said in my video blog that I was feeling pretty sure my scan would be clear, and there it was, a 2 cm tumour growing quite fast. 

    I would hate to be the caregiver, as I don't doubt that it is one of the hardest things a person will ever do. As the patient, all I can say is try to be as patient as possible, we're all dealing with it in our own ways. 

    Sue - Trubrit

     

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    Hello Dotty, sorry you have

    Hello Dotty, sorry you have to join us where we belong. I'm inclined to your husband's pov, I never want to hear talk of time frames or focus on the end more than I have to. I wouldn''t let them talk in those terms while my wife was battling a brain tumor for 6 1/2 years. The average lifespan for those who get a glioma is about 12 months now. Imagine her being told twelve months left when the reality was over six years. Why face each day with a best guess time limit in the back of your mind? With both of us in a cancer fight, money issues, raising a granddaughter with adhd and a defiance disorder, life sucked enough, though we still had some great moments. We had our arguements and hassles, but we also shared a lot of special times, knowing more than most how precious time had become. My view is do what you gotta to treat the stuff and then leave it be as best you can, and find the things you can share and enjoy together. I hope you find a compromise in how you and your man deal with this hard situation, since your both having to cope, and live with a hard reality, together.........Dave

  • lizard44
    lizard44 Member Posts: 409 Member
    Like the others have said

     I’m so sorry you are going though this. My father died of lung cancer  when I was 15.  Years later I was caregiver for my mother in the finals stages of her metastatic breast cancer.  Now I am being treated for stage 4 rectal cancer with mets to the liver.  So I, too have experienced both sides of the situation.

     There are so many emotions, some of which you mentioned:  anger, sadness, anxiety, frustration, helplessness, etc.  But one that you didn’t mention was hope. And perhaps that’s what your husband is trying to nurture by closing out any negativity.  We can  be very realistic about our conditions and about our odds of survival, but  somewhere in the back of our minds, we can also  harbor  the tiniest glimmer of  hope that maybe we’ll beat the odds or at least beat the statistics.  That we’ll be one of those, like some here, who  live  several years beyond what was expected based on  our condition and the statistics. Maybe it’s false hope (although I’m not sure there is such a thing),  maybe it’s an inability to face the truth for some, but maybe it’s a coping mechanism for some of us, too. Maybe it’s that hope that allows us to subject our bodies to treatments that  we know might cause us to suffer awful, debilitating side effects, in the hope that we’ll gain a little more time to spend with our loved ones, a little more time to tie up loose ends. It may be that this is not the case with your husband, and something else is at work. You say, “He is not in denial about his illness or his odds,” so is it safe to assume that you have discussed his diagnosis, treatment, prognosis, etc. in a pragmatic way at some point?  

    I know this must be so very hard for you and I do hope you can find a way to deal with both your emotional needs and his in the time you have left together, that you can find a way so that both of you can spend that time supporting each other and savoring life as much as possible for as long as possible rather than spending a large portion of that precious time thinking about dying.

  • geotina
    geotina Member Posts: 2,111 Member
    Dotty:

    I was the caregiver to my husband who passed away from colon cancer.  He lived three years longer than the doctors thought he would although no one doctor ever told him that.   We traveled a bit during his treatment even venturing to Vegas.   

    If I read your post correctly, and if I didn't I apologize, but you need to adjust your attitude a bit.  Your husband does not want to hear negative thoughts and feelings so stop whatever you are saying that is causing the constant conflict and tension.  Keep it to yourself.  He is in the fight of his life, and needs you to be positive, supportive, loving and see a smile.  

    Of course you of have some anger, sadness and anxiety, that is normal.  Of course you worry about the future, that is normal.  

    Enjoy what you have now, a husband handling his disease the best he can, and be a loving and supportive wife.  Do some things that make both of you happy and leave you smiling.  If you can take some weekends away, even a day trip, do so.  

    Take it from me being alone in life is horrible.   No one to eat dinner with.  No one there to talk to even about silly things.  No one to just sit and watch a TV show with.    No one to share the day with.   No one to help you with chores or fix something you have no idea how to fix.

    So, to sum this up, slap on a happy face and smile, give him a big sloppy kiss and tell him you love him.  Be encouraging not discouraging.

    Wishing you the best - Tina