Bad news...what next

akbetty
akbetty Member Posts: 38
edited March 2014 in Caregivers #1
Yesterday we got bad news. My husband's recent scans show that all his tumors are growing, and there are some new spots as well. I feel like we've entered a new phase: "the beginning of the end." We weren't expecting great news, but this was so much worse than we anticipated. He was getting treatments of veneralbene (sp.?) all summer, and it clearly didn't work for him at all. Now we are trying to decide if it makes any sense to continue treatment. He has fought so hard since he was diagnosed in may 07 with stage four lung cancer, but I can see that he's getting tired. He's even been talking about his funeral and burial lately. I'm actually confused about what to do next. I know he wouldn't have made it this far without his amazing will and optimism, but I see him fading. It's breaking my heart to see him feeling defeated. Is it better to encourage him to fight, or to try to help him accept the inevitable? Has anyone else been in this situation? I never thought I would be in a position where I felt I was giving up.

Comments

  • seanslove
    seanslove Member Posts: 70
    #2
    to fight or not to fight
    akbetty,

    I have walked in your shoes so recently that my heart breaks for you and your spouse. You have one up on us,as we did not get a choice,and the choice we made was only a few day before Sean passed. In some ways I envy that you have time to live before the end,as you have fore-warning,which we really did not get. Upon my Sean's passing I obtained a complete copy of his medical records only to find that we had been lied to up to three days before he passed away,which really upsets me. All the scans,MRI's,and ultra-sounds we were told were clean,were not clean at all,but instead full of masses,which had he known about,he would have never went through the first chemo,as the chemo treatments took away any quality of life he may have had left.
    The worst part is I kept telling him to fight as I too was brain washed by his doctors that there was hope for remission,when all along there never was. At least now,I have some peace,upon seeing the records,that he knows I did not know,and only knew what he knew,and therefore,based my telling him to fight on what I thought was the truth.
    I know how it breaks your heart to see the love of your life go from being on top of the world to feeling the world is down upon his shoulders as I watched my Sean go through this and much more. Our fight was only three months,however,it is three months of our lives I will never forget a moment of. What I can say to you is what I always said to Sean, It's your cancer and in the end what you do is your choice and I stand 110% beside and behind what you want and will move heaven and earth to see your choices are carried out. Do not feel as if you are giving up,only that you are giving love and peace in a time where there is little peace or love left in his heart and mind. If your hubby is anything like my Sean,your love for him,as my love for Sean,and vice versus,is the one and only thing which our men continue to love for,so hold some peace in your heart and mind for this fact.
  • akbetty
    akbetty Member Posts: 38
    #3
    seanslove said:

    to fight or not to fight
    akbetty,

    I have walked in your shoes so recently that my heart breaks for you and your spouse. You have one up on us,as we did not get a choice,and the choice we made was only a few day before Sean passed. In some ways I envy that you have time to live before the end,as you have fore-warning,which we really did not get. Upon my Sean's passing I obtained a complete copy of his medical records only to find that we had been lied to up to three days before he passed away,which really upsets me. All the scans,MRI's,and ultra-sounds we were told were clean,were not clean at all,but instead full of masses,which had he known about,he would have never went through the first chemo,as the chemo treatments took away any quality of life he may have had left.
    The worst part is I kept telling him to fight as I too was brain washed by his doctors that there was hope for remission,when all along there never was. At least now,I have some peace,upon seeing the records,that he knows I did not know,and only knew what he knew,and therefore,based my telling him to fight on what I thought was the truth.
    I know how it breaks your heart to see the love of your life go from being on top of the world to feeling the world is down upon his shoulders as I watched my Sean go through this and much more. Our fight was only three months,however,it is three months of our lives I will never forget a moment of. What I can say to you is what I always said to Sean, It's your cancer and in the end what you do is your choice and I stand 110% beside and behind what you want and will move heaven and earth to see your choices are carried out. Do not feel as if you are giving up,only that you are giving love and peace in a time where there is little peace or love left in his heart and mind. If your hubby is anything like my Sean,your love for him,as my love for Sean,and vice versus,is the one and only thing which our men continue to love for,so hold some peace in your heart and mind for this fact.

    Sean's love
    Sean's love, I just want to say how sorry I am about the loss of your dear Sean, and how much I admire you for your wise and insightful comments since his passing. Your words have brought me comfort, and I, like you, will do all I can to make sure my husband's last days on earth are as pleasant as possible. As I face my worst fears in the coming weeks, I will keep you and Sean and your inspiration in my thoughts and heart.
    Thank you, Betty.
  • pattynonews
    pattynonews Member Posts: 176
    #4
    Might bring peace
    We have been through chemo and radiation still Jack was dx aug 2008, and we also have been in a trial study, and through all that his cancer has spread to some spots in his lungs and his liver, and we were ready to start a new study but Jack keeps having set back, And now starting a new chemo again, I ask Jack is this what you want to do and he tells me he wants to keep fighting,as long as there is hope I want to fight, But now Im wondering after ready your story should we get his records, but i do know we have the best doctors at the cancer center in Texas, CTRC is one of the biggest cancer center in American, I know it wont bring Sean back but I would look into an investigation of why they told you his scans were clean when they were not, it might bring to peace to you that you will be helping someone else so it does not happen to someone else,Hang there, You are in our prayers,

    Patty
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #5
    This Is Hard
    My husband has been fighting cancer for 6 years. I think we always knew that we were just buying time and we have been blessed with all the time we have bought. My husband credits PPMM (Power of Prayer and Modern Medicine). Now that time may be running out, and it's hard. My husband is sick and tired of being sick and tired. He is doing chemo, again, knowing that this is what the dr. admitted is a "Hail Mary Pass." My husband started talking about his memorial service early on. At first it bothered me. Then I realized that it was important to him. Now, it is a family joke. That may sound strange, but he has a great sense of humor. If we included everything he has told me he wants, the service would take all day. He has also told me he wants either Daffy Duck or Betty Boop on his grave marker.

    I have told my husband that I will support him whatever decision he makes. If he wants to keep fighting, I'll be with him. If he wants to stop, we will call Hospice. I don't think that's giving up. It's his life and his choice. We made sure that all our "affairs are in order." We've talked about end of life issues. We've laughed together and cried together.

    It's hard to think of being left behind. One of the the first things that ran through my mind when he was first diagnosed was that we weren't going to grow old together. That wasn't the plan! One thing we have learned on this journey is that plans change.

    Hold tight. There are many of us sharing this board. I just discovered the caregiver one. I was on the colon cancer one for a short time and will continue to follow it as well. Thanks for giving me the chance to share. I hope we can help each other. Fay
  • akbetty
    akbetty Member Posts: 38
    #6
    grandmafay said:

    This Is Hard
    My husband has been fighting cancer for 6 years. I think we always knew that we were just buying time and we have been blessed with all the time we have bought. My husband credits PPMM (Power of Prayer and Modern Medicine). Now that time may be running out, and it's hard. My husband is sick and tired of being sick and tired. He is doing chemo, again, knowing that this is what the dr. admitted is a "Hail Mary Pass." My husband started talking about his memorial service early on. At first it bothered me. Then I realized that it was important to him. Now, it is a family joke. That may sound strange, but he has a great sense of humor. If we included everything he has told me he wants, the service would take all day. He has also told me he wants either Daffy Duck or Betty Boop on his grave marker.

    I have told my husband that I will support him whatever decision he makes. If he wants to keep fighting, I'll be with him. If he wants to stop, we will call Hospice. I don't think that's giving up. It's his life and his choice. We made sure that all our "affairs are in order." We've talked about end of life issues. We've laughed together and cried together.

    It's hard to think of being left behind. One of the the first things that ran through my mind when he was first diagnosed was that we weren't going to grow old together. That wasn't the plan! One thing we have learned on this journey is that plans change.

    Hold tight. There are many of us sharing this board. I just discovered the caregiver one. I was on the colon cancer one for a short time and will continue to follow it as well. Thanks for giving me the chance to share. I hope we can help each other. Fay

    Thank you Fay
    It sounds like you and your husband are very close and supportive of each other. We haven't been in this fight as long as you have, but we also always knew we were just buying time. I think that's why I'm a bit surprised that I'm having such a hard time accepting that we are nearing the end of the fight. I feel almost as upset as I did when he was first diagnosed. I guess no matter how long the battle it's still hard to come to terms with. You are right: plans change. Good luck with your husband's chemo. I'll keep you in my thoughts.
    Betty
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #7
    akbetty said:

    Thank you Fay
    It sounds like you and your husband are very close and supportive of each other. We haven't been in this fight as long as you have, but we also always knew we were just buying time. I think that's why I'm a bit surprised that I'm having such a hard time accepting that we are nearing the end of the fight. I feel almost as upset as I did when he was first diagnosed. I guess no matter how long the battle it's still hard to come to terms with. You are right: plans change. Good luck with your husband's chemo. I'll keep you in my thoughts.
    Betty

    Feelings
    I don't think those first feelings of fear, shock, hurt and loss ever really leave us. We just push it to the back of our minds until it comes crashing back with each new poor scan, blood test or whatever. I can't speak for others, but that's how I feel. This guy is the love of my life. I don't want to lose him. I know I can take care of myself, but that's not the point. It's hard to accept that we're not in charge. I always think I am handling things really well until some little thing sets me off. Fay
  • akbetty
    akbetty Member Posts: 38
    #8
    grandmafay said:

    Feelings
    I don't think those first feelings of fear, shock, hurt and loss ever really leave us. We just push it to the back of our minds until it comes crashing back with each new poor scan, blood test or whatever. I can't speak for others, but that's how I feel. This guy is the love of my life. I don't want to lose him. I know I can take care of myself, but that's not the point. It's hard to accept that we're not in charge. I always think I am handling things really well until some little thing sets me off. Fay

    Fay
    I think you're right about our initial feelings never leaving us. I always say that I can have fifteen different emotions in fifteen minutes. It is hard to realize that we are not in charge. I'm always thinking, "maybe if I do this," or "maybe if I do that..." My husband is so much better today that I'm walking on air, and I guess I just have realize that we'll have lots of ups and downs all the time. I don't want to lose my husband either, but the most important thing is that we have them now, right? We'll stay on this roller coaster as long as it's going. I hope your husband is doing well.
    Thanks for sharing your thoughts.
    Betty
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #9
    akbetty said:

    Fay
    I think you're right about our initial feelings never leaving us. I always say that I can have fifteen different emotions in fifteen minutes. It is hard to realize that we are not in charge. I'm always thinking, "maybe if I do this," or "maybe if I do that..." My husband is so much better today that I'm walking on air, and I guess I just have realize that we'll have lots of ups and downs all the time. I don't want to lose my husband either, but the most important thing is that we have them now, right? We'll stay on this roller coaster as long as it's going. I hope your husband is doing well.
    Thanks for sharing your thoughts.
    Betty

    Hanging in There
    My husband is still hanging in there. This is the week without chemo so it's better than the week with chemo. We met with the radiology oncologist today. He decided to wait to see if the chemo is working before doing any more radiation. The radiation will only help with pain in his back and the dr. says whether it will help is a 50/50 chance. Since the tumor is near the spine, there is also some risk. It was a difficult decision for him to make. He is sleeping a lot because of the number of pain reliever he takes. Life is good, though, because he is still here. We also had a couple of good discussions today. Little things are much more important these day. I hope you have more good days. Fay

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