Need help and support

decko2
decko2 Member Posts: 10
My partner is dieing of Liver disease and now my father may have cancer. My father started having breathing problems in January 2004; a few weeks ago he went to the doctor who thought he had Pneumonia and given steroids. The internal med doctor sent him to a pulmonologist who sent him for a CT scan. They found swollen lymph nodes and something in/on his liver. They did a biopsy. Now they are thinking cancer metastasized in his liver and TB. I am scared and do not know what to do. I can not lose my only living parent and my partner of over 10 years at the same time. She was diagnosed 3 years ago and does not have much longer as she is not a transplant candidate. I am not strong enough. I put on a strong face for them, but it hurts so much and if I lose them I will be without anyone to talk to about this. I lost my mother 8 years ago suddenly of a heart attack and my grandmother over 2 years ago to a car accident. Sorry I am going on and on, but I don't know where else to turn. Thank you for listening.

Comments

  • kayetera
    kayetera Member Posts: 13
    Decko2,

    I am so sorry you are having to go through this experience. Especially with two of your loved ones at the same time.

    Do you have a cancer center in your community? They offer support groups for caregivers (family members of cancer patients). It sounds like you desperately need someone to lean on right now and to talk to. Also, call the American Cancer Society and see what chapters are near you, they may also have some ideas on how to get you some help to cope with this.

    Does your partner and your father have a good oncologist? Also, check into hospice care. They also provide emotional support for the families, especially when it comes to end of life care.

    I will pray for you and your loved ones. I hope that what I had to suggest helps in some small way.

    Teresa
    Tx
  • decko2
    decko2 Member Posts: 10
    kayetera said:

    Decko2,

    I am so sorry you are having to go through this experience. Especially with two of your loved ones at the same time.

    Do you have a cancer center in your community? They offer support groups for caregivers (family members of cancer patients). It sounds like you desperately need someone to lean on right now and to talk to. Also, call the American Cancer Society and see what chapters are near you, they may also have some ideas on how to get you some help to cope with this.

    Does your partner and your father have a good oncologist? Also, check into hospice care. They also provide emotional support for the families, especially when it comes to end of life care.

    I will pray for you and your loved ones. I hope that what I had to suggest helps in some small way.

    Teresa
    Tx

    Teresa
    Thank you so much. I will give them a call. My father has to go in for a CT of his head. He has admitted he is scared. That made this harder for me as he has never said that to me in my 35 years.
    I will keep everyone updated.

    Cheri
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    Wow, I am relly sorry to hear what you are going through. There's a lot of support on this site to be had. Once you and your dad find out what is going on, you can get valuable information here on the appropriate discussion boards. Do they think it is colorectal cancer? It is interesting that they are doing the head CT.....I know the waiting and not knowing aspects of cancer are the hardest. Try to get your dad to take a step back, breathe, and wait and see what they find out. Easier said than done, but no use worrying so much before you know what is going on! You have enough on your plate w/ your partner. Try to take care of yourself too! You can't forget about yourself girl!
  • decko2
    decko2 Member Posts: 10

    Wow, I am relly sorry to hear what you are going through. There's a lot of support on this site to be had. Once you and your dad find out what is going on, you can get valuable information here on the appropriate discussion boards. Do they think it is colorectal cancer? It is interesting that they are doing the head CT.....I know the waiting and not knowing aspects of cancer are the hardest. Try to get your dad to take a step back, breathe, and wait and see what they find out. Easier said than done, but no use worrying so much before you know what is going on! You have enough on your plate w/ your partner. Try to take care of yourself too! You can't forget about yourself girl!

    Hello. I got the dreadful news today. My dad had Metastatic Cancer they believe began in his lungs and spread all over. They did a whole body/bone scan today. My step mom said he had tumors all over. She also gave me even worse news the prognosis is not good. He starts chemo Monday. They are doing VP16 & Platinum. He is on Oxygen 24/7 as his saturation is very low, he is on pain meds and his bowels are hurting his bad as his liver is grossly enlarged due to the tumor. I can honestly say I hoped I would never need this group even though I know it is a great thing.
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    decko2 said:

    Hello. I got the dreadful news today. My dad had Metastatic Cancer they believe began in his lungs and spread all over. They did a whole body/bone scan today. My step mom said he had tumors all over. She also gave me even worse news the prognosis is not good. He starts chemo Monday. They are doing VP16 & Platinum. He is on Oxygen 24/7 as his saturation is very low, he is on pain meds and his bowels are hurting his bad as his liver is grossly enlarged due to the tumor. I can honestly say I hoped I would never need this group even though I know it is a great thing.

    Awww, I am really sorry to hear about that! I was hoping it would not be so bad. It seems like the old saying "when it rains, it pours" is so true sometimes! Make sure to post on the lung cancer forum - there will be lots of people on there to help you, if you haven't already done that. I thought it sounded like colon cancer because of the spot on his liver (?)......Where do you live? Are there any major cancer centers nearby where you could join some support groups for family members? One other thought......as a cancer survivor myself, I have often wondered what I would do if I ever got to the stage that your father is in.....I would want to make sure that the doctors focused more on "quality of life" rather than trying to eek out a couple of extra months for me. I would say give the chemo a chance to work, but if it appears that it isn't then try and focus on the quality of his life so that he can feel as "normal" as possible and not have to be in the hospital unless it is absolutely necessary. Good luck with all of this. At least you have your mom and you guys can help each other through these terrible times!
    -Good luck, Susan
  • decko2
    decko2 Member Posts: 10

    Awww, I am really sorry to hear about that! I was hoping it would not be so bad. It seems like the old saying "when it rains, it pours" is so true sometimes! Make sure to post on the lung cancer forum - there will be lots of people on there to help you, if you haven't already done that. I thought it sounded like colon cancer because of the spot on his liver (?)......Where do you live? Are there any major cancer centers nearby where you could join some support groups for family members? One other thought......as a cancer survivor myself, I have often wondered what I would do if I ever got to the stage that your father is in.....I would want to make sure that the doctors focused more on "quality of life" rather than trying to eek out a couple of extra months for me. I would say give the chemo a chance to work, but if it appears that it isn't then try and focus on the quality of his life so that he can feel as "normal" as possible and not have to be in the hospital unless it is absolutely necessary. Good luck with all of this. At least you have your mom and you guys can help each other through these terrible times!
    -Good luck, Susan

    Susan,
    Thank you for all your help. I will talk with him, but he is such a hard head. I think it hurts me more that he does not seem to have his sense of humor any more. He looks so sick. By the way not to may you feel worse, but I lost my mother 8 years ago to a sudden heart attack. My falmily is down to myself, my sons, my father, my sister and her 2 girls. Everyone else has passed several years ago or more. I have made peace with those loses, but these two loses may just do me in. I keep thinking how much does god think I can take/handle? I thought I would never get through my mother's death. It took me almost 2 years to be able to talk about it, now I still think about it and cry, but the pain is not so bad.

    Cheri
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    decko2 said:

    Susan,
    Thank you for all your help. I will talk with him, but he is such a hard head. I think it hurts me more that he does not seem to have his sense of humor any more. He looks so sick. By the way not to may you feel worse, but I lost my mother 8 years ago to a sudden heart attack. My falmily is down to myself, my sons, my father, my sister and her 2 girls. Everyone else has passed several years ago or more. I have made peace with those loses, but these two loses may just do me in. I keep thinking how much does god think I can take/handle? I thought I would never get through my mother's death. It took me almost 2 years to be able to talk about it, now I still think about it and cry, but the pain is not so bad.

    Cheri

    Geez, I am sorry , I guess I was refering to your step-mom. Are you close at all? (my fault for not reading more carefully - sorry!) Seriously though, you need to be there for your sons and your nieces. You cannot allow yourself to go into a tailspin. At least you have your own health and still have people who love you! I know it is hard to look at the positive things when life seems so miserable, but having your own health is a true blessing. You need to get out and take care of yourself! Do things that you find enjoyable and smell the proverbial roses. From all of your hard life experiences you have learned that life is short and you have to take advantage of the time you have been given. I am sure your mother, your father, and your partner would not want you languishing around in misery. I hope that I do not sound too harsh.....but you can and will get through this as awful as it seems. Seriously, you have to try to focus on the good things. Go out and treat your self to a massage, or 12. Do some things that you enjoy. After all of this bad stuff has passed go to Hawaii or something. Be grateful for your own good health! I don't know what else to say. I hope this helps you. Take care, Susan
  • decko2
    decko2 Member Posts: 10

    Geez, I am sorry , I guess I was refering to your step-mom. Are you close at all? (my fault for not reading more carefully - sorry!) Seriously though, you need to be there for your sons and your nieces. You cannot allow yourself to go into a tailspin. At least you have your own health and still have people who love you! I know it is hard to look at the positive things when life seems so miserable, but having your own health is a true blessing. You need to get out and take care of yourself! Do things that you find enjoyable and smell the proverbial roses. From all of your hard life experiences you have learned that life is short and you have to take advantage of the time you have been given. I am sure your mother, your father, and your partner would not want you languishing around in misery. I hope that I do not sound too harsh.....but you can and will get through this as awful as it seems. Seriously, you have to try to focus on the good things. Go out and treat your self to a massage, or 12. Do some things that you enjoy. After all of this bad stuff has passed go to Hawaii or something. Be grateful for your own good health! I don't know what else to say. I hope this helps you. Take care, Susan

    Susan,

    I try to look at the good things and good times. I spent 5 hours with my father yesterday. It was time I spent telling him stuff I need to tell him and just sitting there while he slept. When he did get up he felt stronger and today he is doing better. My step mom is a royal pain. She is a Nurse Practisioner(SP) and is trying to treat my father. That is something I need to talk to his chemo nurse & maybe even doctor. She needs to be his wife not his nurse. She is over protective and thinks someone must watch him ever second. She thinks he will start bleeding internally. I don't know what watching him would stop that or even know. I just need to go tomorrow for his first treatment and see what I can get taken care of. I am afraid she is going to have him sign all kind of legal documents and he is not in the right mind to be making any legal decisions. Also I want to make sure he is making his medical decisions. She wants him to keep going and she hides the truth from him. That is not fair. I do not want to make waves, but I do not want her to make him suffer either. I want him to have a good quality of life if this has spread too far.

    Bless you and yours.
    Cheri
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    decko2 said:

    Susan,

    I try to look at the good things and good times. I spent 5 hours with my father yesterday. It was time I spent telling him stuff I need to tell him and just sitting there while he slept. When he did get up he felt stronger and today he is doing better. My step mom is a royal pain. She is a Nurse Practisioner(SP) and is trying to treat my father. That is something I need to talk to his chemo nurse & maybe even doctor. She needs to be his wife not his nurse. She is over protective and thinks someone must watch him ever second. She thinks he will start bleeding internally. I don't know what watching him would stop that or even know. I just need to go tomorrow for his first treatment and see what I can get taken care of. I am afraid she is going to have him sign all kind of legal documents and he is not in the right mind to be making any legal decisions. Also I want to make sure he is making his medical decisions. She wants him to keep going and she hides the truth from him. That is not fair. I do not want to make waves, but I do not want her to make him suffer either. I want him to have a good quality of life if this has spread too far.

    Bless you and yours.
    Cheri

    Hi again......Well it sounds like you are holding up pretty well! I was glad to see that you put a post in the lung cancer section. I hope someone can help you out who is going through some of the same things as your father. I agree that you should speak to the doctor about your father not being able to make his own decisions. Especially about the pain medications and whether he what the goal of the chemo is. Have you talked to the doctor about the LONG TERM GOALS of all of this? Your step-mom needs to realize if the doctors are just trying to extend your fathers life for a couple of months, or will this change his outcome? Your father should be able to take pain meds on his own, when he needs them. I hope you don't have to "have it out" w/ her. When I was diagnosed, my mother was just a total basket case. I expected her to be upset, but she just went on and on and acted like I was already dead and buried. She kept on saying that I was "her only baby girl" and that this is not "the natural order of things". You can imagine how I felt, newly diagnosed, and having to deal w/ her melodrama. I thought she would quit after a couple of days, but she was just beside herself and was calling my brother (who is a doctor, but not an oncologist) at all hours of the night, etc. etc. She would get all drunk and keep me on the phone for like 2 hours! It was horrible. Finally after a couple of days of this, I just totally went off and told her not to call me anymore because I could not deal w/ her ****! Amazingly, this worked. I am not normally disrespectful to my mother, but I had no other choice. She has been much better since then, and it's a good thing because it has been 2 years now! I guess what I am trying to say is that I hope you don't have to put your foot down w/ your step-mom, but you may have to. Hopefully the doctors will do it for you, that is why they get paid the "big bucks"! Well, let me know what happens.
    Take care, Susan
  • decko2
    decko2 Member Posts: 10
    Susan,
    You have such a wonderful heart and deserve the best care. You mother was dealing with her pain the only way she knew how. I am glad you in a sense "slapped" her into reality. My step-mom is so fake and pushy that would not work. My father lost his battle Wed 4-7-2004 at 12:30pm CST. He is now at peace and in no pain. My step-mother is such a ****. She went against my fathers wishes and had a religous service at the funeral home after cremation. The whole seemed to be directed to her, never mind my sister and myself. I know she was his wife (3rd), but the people sending all the cards and such are people I have know literally my whole life. It hurt more than my fathers passing. I was and am ok with his death. He was suffering and I told him to stay only as long as he felt he could. I would be fine and it was perfectly ok. We would all understand. Exactly 1 hour after I left him he died. I read the obit on Friday and my step-thing made a joke out of it in my eyes. Here is the link you have to read it and I will explain. http://www.legacy.com/kansascity/LegacySubPage2.asp?Page=LifeStory&PersonId=2115571 She did not need to put his high school or college(he quit) in there, his military is the wrong dates and the objector thing is a bad thing as he did not object, his first wife (my mother) was not a Roosa any more she was remarried in the 80's, she did not put in his grandchildren he had 4 with one on the way, she did not need to put the nieces, nephews and such in there. I am going to run a memoral for him with the truth. My father was a wonderful man who loved life, music, art and laughter. This obit started my war. Saturday after the service I found out that my fathers primary care doc the one who pronounced him was not only my nurse practioner step-mothers friend, but the doctor who was thrown in the brig when she refused to go to the middle east when we were there for Opperation Dessert Storm. She spent 15 month in there. Then I found out she also faked his death certificate and put liver failure instead of complications of cancer or just cancer. Without an autopsy she would not know and since he was cremated within 48 hours an autopsy was never done. See what I mean about the war.

    Thank you for all your support during my father's battle.
    Cheri