So confused and broken hearted

mydeardad
mydeardad Member Posts: 7
edited August 2012 in Liver Cancer #1
I talked to my fathers doctor this morning. They want to implant the Therasphere’s on the 10th of September. I explained that he can hardly walk, his entire body aches and he is extremely fatigued. Not to mention the diarrhea that doesn't end. They decided to stop the Nexavar and I am taking him for blood work. Hopefully he will bounce back in time to have the procedure. They feel that it is more important to get them in at this point than to continue the chemo. The Nexavar will be restarted after the Y-90 is complete, probably one pill a day since he is only taking half of the recommended dose now.

This is just so darn hard; hard for me to watch and even worse for him to live through. The Dr.’s say that none of these treatments are for a cure; he will never be cancer free. Then why are we putting him through this. He loves long walks with my mom and their dog; he loves to fish and to camp. Those are all things that in his current state he cannot do.

So we are prolonging his life but for what? Where is the quality? At what point do you say the heck with it and LIVE. Live until the cancer does what everyone knows is inevitable?
I love my father and don’t want him to die. I apologize if I seem cold, believe me I am not. I am an absolute wreck. But is this fair to him? I am having a hard time helping him fight a battle when I know the outcome.

Comments

  • 1NYCGUY
    1NYCGUY Member Posts: 9
    #2
    you and your dad
    Hey there,

    I just wanted you to know you aren't alone. I know exactly how you are feeling. I know that you read my mom's story and you responded to me. So hopefully this is helpful.

    Your dad has chosen to fight the battle, my mom chose not to. I can't tell you who is right or wrong, but I know that my only job is to make it their decision. After my mom was diagnosed she said, "I don't want anymore tests. We know how this will end and I've seen too many of my friends get more sick from treatments than cancer. I don't want that."

    At that moment I realized that I couldn't make her go for more tests. I also felt what you were feeling which is why try anything if we all know it won't work. Here is what I've learned. Each of us address our problems differently. My mom chose to come home. She is bed ridden at the moment and her greatest pain is a bedsore on her tail bone. She lives with me and my wife. She still has no symptoms of this cruel disease, and she laughs, smiles and asks me to make or get her the craziest things. (Today, was a boston cream donut, a calzone and the some sherbet.) I get her anything she wants and realize that each moment is a blessing. My dad died of a heart attack 18 years ago. No symptoms, no illness,nothing, just stopped at a stop sign (driving with my mom and brother in the car) and put his head down. Gone, I never had a chance to say anything, never had a chance to kiss him one more time or tell him I love him.

    Now, with my mom, as long as she is not in pain, I feel like each day is a blessing. I try (don't always succeed) to accept each day as it comes. She has good days where I swear she isn't sick and others where I think it is the end. My thoughts range from, Hope to Dread. I hope she is getting better but I dread she might be in pain. Honestly, I've even thought once or twice that I am exhausted. I feel like we are all sitting around waiting for the inevitable. After I have that thought, I smack myself in the head and realize that I am wasting precious moments. I go sit in her room and whether she is awake or asleep I sit in her rocking chair next to her bed and watch whatever she has on the TV. (usually old TV shows, I've officially seen every episode of Leave it to Beaver.) Every now and then she wakes up and smiles. Sometimes she wants water,or ice chips, other times she wants a grilled cheese. Yesterday she asked me to make her mom's recipe for pasta faggioli (beans and macaroni). Took three tries to get it right, but I got it.

    My suggestion is, go talk to your dad. Ask him about his reason for doing the chemo. Is he doing it for you or your mom or is he doing it for him. Give him permission to make his choice and support it. If he like going for long walks get him a wheel chair and push it, or hook the dog up to it and your mom and push him. This is about him, all about him.

    I look at my mom, laying in bed. She asks my wife to help turn her (ascites is bad) and then she apologizes. I remind my mother that she spent so much of her life doing things for me, this is just a chance to return the favor.

    Kiss your dad ( I don't care if you are guy or a girl) tell him you love him. Tell him what a good job he did raising you. Just by you being on these boards looking for answers proves that he did something right.

    Support his decision and know that you have support here and I suspect in your family. I am a wreck too. I worry every minute of every day. I stopped crying for now. I told my wife and my brother. There will be time to cry, but right now, let's realize how lucky we are that we have a chance to see our mom and talk to her. As long as she is not in pain, I am happy for each moment.

    I know your dad is suffering and you are suffering right there with him. If he chooses to stop the treatments support him, if he chooses to continue them support him.

    When you need to scream, cry, or just question the crazy things that I am sure run through your head just message me.

    Good Luck and You and Your family are in my prayers.
  • shinmin1500
    shinmin1500 Member Posts: 11
    #3
    1NYCGUY said:

    you and your dad
    Hey there,

    I just wanted you to know you aren't alone. I know exactly how you are feeling. I know that you read my mom's story and you responded to me. So hopefully this is helpful.

    Your dad has chosen to fight the battle, my mom chose not to. I can't tell you who is right or wrong, but I know that my only job is to make it their decision. After my mom was diagnosed she said, "I don't want anymore tests. We know how this will end and I've seen too many of my friends get more sick from treatments than cancer. I don't want that."

    At that moment I realized that I couldn't make her go for more tests. I also felt what you were feeling which is why try anything if we all know it won't work. Here is what I've learned. Each of us address our problems differently. My mom chose to come home. She is bed ridden at the moment and her greatest pain is a bedsore on her tail bone. She lives with me and my wife. She still has no symptoms of this cruel disease, and she laughs, smiles and asks me to make or get her the craziest things. (Today, was a boston cream donut, a calzone and the some sherbet.) I get her anything she wants and realize that each moment is a blessing. My dad died of a heart attack 18 years ago. No symptoms, no illness,nothing, just stopped at a stop sign (driving with my mom and brother in the car) and put his head down. Gone, I never had a chance to say anything, never had a chance to kiss him one more time or tell him I love him.

    Now, with my mom, as long as she is not in pain, I feel like each day is a blessing. I try (don't always succeed) to accept each day as it comes. She has good days where I swear she isn't sick and others where I think it is the end. My thoughts range from, Hope to Dread. I hope she is getting better but I dread she might be in pain. Honestly, I've even thought once or twice that I am exhausted. I feel like we are all sitting around waiting for the inevitable. After I have that thought, I smack myself in the head and realize that I am wasting precious moments. I go sit in her room and whether she is awake or asleep I sit in her rocking chair next to her bed and watch whatever she has on the TV. (usually old TV shows, I've officially seen every episode of Leave it to Beaver.) Every now and then she wakes up and smiles. Sometimes she wants water,or ice chips, other times she wants a grilled cheese. Yesterday she asked me to make her mom's recipe for pasta faggioli (beans and macaroni). Took three tries to get it right, but I got it.

    My suggestion is, go talk to your dad. Ask him about his reason for doing the chemo. Is he doing it for you or your mom or is he doing it for him. Give him permission to make his choice and support it. If he like going for long walks get him a wheel chair and push it, or hook the dog up to it and your mom and push him. This is about him, all about him.

    I look at my mom, laying in bed. She asks my wife to help turn her (ascites is bad) and then she apologizes. I remind my mother that she spent so much of her life doing things for me, this is just a chance to return the favor.

    Kiss your dad ( I don't care if you are guy or a girl) tell him you love him. Tell him what a good job he did raising you. Just by you being on these boards looking for answers proves that he did something right.

    Support his decision and know that you have support here and I suspect in your family. I am a wreck too. I worry every minute of every day. I stopped crying for now. I told my wife and my brother. There will be time to cry, but right now, let's realize how lucky we are that we have a chance to see our mom and talk to her. As long as she is not in pain, I am happy for each moment.

    I know your dad is suffering and you are suffering right there with him. If he chooses to stop the treatments support him, if he chooses to continue them support him.

    When you need to scream, cry, or just question the crazy things that I am sure run through your head just message me.

    Good Luck and You and Your family are in my prayers.

    TO 1NYCGUY
    Dear 1NYCGUY,

    You are exactly right on every single word that you said. I am now with my husband who has advance liver cancer and taking chemo drug by mouth. There is no option for transplant, operation, or any of it. If this medicine is working, he has 2 years to live.

    He has 13cm tumor and multiple tumors all over his liver. He said the pain is always there. Sometimes he has good day and sometime he is in pain. He is very strong in parson but his body is just not follow him as he wanted to.

    I cook for him, I walk with him, I dress for him, I bath for him, I eat with him, i watch movie with him at home, I laugh with him, I pray with him. I still can feel with him when he is in pain. We both married in January and we found out his cancer in May.

    I love him so much.

    Thank you for your words.
  • 1NYCGUY
    1NYCGUY Member Posts: 9
    #4
    shinmin1500 said:

    TO 1NYCGUY
    Dear 1NYCGUY,

    You are exactly right on every single word that you said. I am now with my husband who has advance liver cancer and taking chemo drug by mouth. There is no option for transplant, operation, or any of it. If this medicine is working, he has 2 years to live.

    He has 13cm tumor and multiple tumors all over his liver. He said the pain is always there. Sometimes he has good day and sometime he is in pain. He is very strong in parson but his body is just not follow him as he wanted to.

    I cook for him, I walk with him, I dress for him, I bath for him, I eat with him, i watch movie with him at home, I laugh with him, I pray with him. I still can feel with him when he is in pain. We both married in January and we found out his cancer in May.

    I love him so much.

    Thank you for your words.

    To Shinmin
    I am so sorry to hear about your husband. He is very lucky to have you there with him.

    Today my mom passed in my arms.

    It was at once the most frightening moment of my life and at the same time the most gracious blessing I could have received from God.

    I found that my prayer went from praying for a miracle, to praying for her comfort, to praying for her to pass away with little to no pain.

    My mom's battle was relatively short. She'd be sick since June with a severe infection that became septic. She spent several weeks in an out of the hospital before the cancer was found. The cancer diagnosis was unexpected by everyone including her doctor. From diagnosis to her last breath was less than 3 weeks.

    You have a long road ahead of you. I hope your journey is paved with blessings. Enjoy every laugh. Let him know you are there for him. As his illness progresses let him know more often.

    My mom asked for one thing when she was diagnosed. She asked to come home and not be poked by another doctor. We are fortunate enough to be able to have made that wish come true.

    For the majority of the past 3 weeks we had a great time. Mom was bedridden but it didn't damper her spirit. She lived her life with kindness and dignity and I wanted to make sure that she died that way. My brother, my wife and her sister and I took turns taking care of my mom. From bedpans to ice cream cake we did everything. We are all tired and I am sure that my exhaustion is damping some of my sadness. At the same time I know that we did everything we could for her. She was happy right up until she couldn't speak anymore. Even then in her sleep she managed a smile every now and then.

    Here is the one thing that I will tell you and anyone caring for a terminally ill loved one.

    When the time is right, you need to let them know that it is okay for them to go. Let them know you will be okay. I had done this with my mom weeks ago when she was still alert. I thanked her for raising me the way she did and told her that I was jealous that she would get to see my dad and the rest of our family.

    My brother did not. We are a very close family, but my mom and my brother had a more special relationship. He is disabled and she was elderly. On any given day I don't know who took care of who. They made it work and they had a lot of fun together. Today I told my brother he had to tell that to my mom. He said he couldn't. I told him he had to. She had been hanging on my a thread for 2 days. That is 36 hours longer than any expert gave her.

    So in his own way and in his own time he sat with her alone and told her. He then got up and went to rest his head for a few minutes, he dozed off. I sat there and held my moms had. She was in a coma/ deep deep sleep. I held her hand, kissed it, kissed her and told her I loved her.I reaffirmed for her that I would take care of my brother and that she didn't have to worry. I saw a little eyebrow raise. Maybe a muscle reaction maybe she heard me. I don't know. I kept sitting and watching her, whispering my appreciation and love to her. About 45 minutes after my brother gave his permission for her to go. She did. I woke my brother up and we both held her as she finally became peaceful.

    So tell your husband you love him and that you will be okay. Trust me even if his eyes are closed it will matter to him.

    Good Luck and God Bless.

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