sad, mad, glad....ho hum!

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cher8871
cher8871 Member Posts: 64
edited March 2014 in Caregivers #1
my dad is at the point where he cannot be left alone. he was DX with NSCLC Adenocarcinoma w/4 mets to brain 04/21/10. has had two craniotomies. they removed the biggest tumor in his brain, which was in the cerebellum, but the other 3 are too imbedded. the lesion on his lung was too close to his heart to biopsy and because it had already gone to the brain he was not a candidate for lobectomy. he had 13 rounds of radiation that ended in mid june. his vision has gotten worse and the decadron they have him on has made his legs EXTREMELY weak! well, they say it's from the steroids anyway, yet he still has plenty of upper body strength. he eats well, most of the time, has no pain and is for the most part cognizant. he gets confused about what day and time it is. i am an only child and myself, my husband and my 9 year old son live with my dad. i have an aunt and uncle that help with doc visits but either me or my hubby are here 24/7. i feel guilty because i get mad that i can't just leave and do what i want to do.....i can only imagine how my dad must feel. in march he was fine and now he's absolutely not fine. will never drive again, work again.....they've given him a year as a prognosis. he was in the hospital for dehydration a couple of weeks ago and since then he has not been the same. i am afraid that his cancer has spread to other places but the docs say nothing has changed MRI wise, other than he has increased swelling where the removed the tumor. if his hands shake, they blame it on the steroids...if the shaking gets better, they say it's from the steroids. they want to start giving him Avastin every other week. it's taken me 5 whole days to talk him into it. i explained that it would improve his quality of life. he keeps saying if something else happens to just knock him in the head.

i know i'm rambling.....sorry about that. i just needed to vent i guess. sad, because i hate seeing him this way. mad at cancer! glad that he got his disability and will be able to draw his pension from work and still have good health insurance. ho hum, because i'm feeling sorry for myself. i feel stupid just saying it.....

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  • ketziah35
    ketziah35 Member Posts: 1,145
    #2
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    .y mother has cplon cancer.
    .y mother has cplon cancer. It is hard to watch those that you luv go through pain. It is normal to feel the way you are feleling. My mom hs been severrly dehydrated since she started chemo. It made her seem like she was a mopdy alzheimers patient. The dcs say that cancer treatmnt does that and ordered her to drink 80 oaz water a day epecially with the heat. She did and seems to be doing better.
  • kimmygarland
    kimmygarland Member Posts: 312
    #3
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    ketziah35 said:

    .y mother has cplon cancer.
    .y mother has cplon cancer. It is hard to watch those that you luv go through pain. It is normal to feel the way you are feleling. My mom hs been severrly dehydrated since she started chemo. It made her seem like she was a mopdy alzheimers patient. The dcs say that cancer treatmnt does that and ordered her to drink 80 oaz water a day epecially with the heat. She did and seems to be doing better.

    Cancer sucks
    And I hate it. I know how you feel, feeling like your life has been taken from you. I am my husband's caregiver and we just recently found out he likely has a recurrence. Biopsy is 8/23. I guess this will be my life.... constant worrying about tests, his blood levels, tumors coming back, etc. But I guess the alternative is that he is either cured - God I wish that would happen, or he is gone, and I sure don't want that. I have come to think of my life as "the new normal". They talk about that alot on the "Head and Neck" forum and I've kind of adopted the phrase. Not crazy about the new normal, but will just have to accept it and deal with it.

    It's all so scary. Hang in there, and I hope you can find a way to take a break soon.
  • kayaker01
    kayaker01 Member Posts: 20 Member
    #4
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    I AGREE CANCER DOES SUCK
    It sucks so very much! Not only for the patient but all those around them that love them and care for them.
    I am so sorry to hear about your father. I believe if you contact hospice they can arrange for in home care long enough for you to get a couple of hours relief.
    I think all of us caregivers at one time or other think we are feeling sorry for ourselves and maybe we are but we are only human. I do not think any of us should feel bad about it.
    GOD bless you and your family. FYI check out the "you might be a caregiver if..." good for a laugh/cry and to vent
  • Pennymac02
    Pennymac02 Member Posts: 332 Member
    #5
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    kimmygarland said:

    Cancer sucks
    And I hate it. I know how you feel, feeling like your life has been taken from you. I am my husband's caregiver and we just recently found out he likely has a recurrence. Biopsy is 8/23. I guess this will be my life.... constant worrying about tests, his blood levels, tumors coming back, etc. But I guess the alternative is that he is either cured - God I wish that would happen, or he is gone, and I sure don't want that. I have come to think of my life as "the new normal". They talk about that alot on the "Head and Neck" forum and I've kind of adopted the phrase. Not crazy about the new normal, but will just have to accept it and deal with it.

    It's all so scary. Hang in there, and I hope you can find a way to take a break soon.

    How True
    I'm definately going to borrow that "new normal" phrase. It kinda made me take a look at my situation and realize that apparently, I HAVE adapted to a new normal--maybe thats one way of getting thru--the human spirit is an amazing thing. I will be thinking about you on biopsy day.
  • 1231kath
    1231kath Member Posts: 7
    #6
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    CHER, ITS HEALTHY FOR YOU TO
    CHER, ITS HEALTHY FOR YOU TO JUST LET IT OUT, ANYTHING YOU SAY IS NOT DUMP, WE AS CAREGIVERS GO THROUGH ALOT, MY HUSBAND IS IN STAGE4 OF PROSTATE CANCER HE IS STILL UP AND ABOUT WHEN HE IS HAVING A GOOD DAY, WE R ON THE NEWEST AND LAST CHEMO HE CAN HAVE, THE FIRST TEATMENT WAS AWFUL, HE SAID HE WOULD TAKE ONE MORE, THEY ARE GOING TO LOWER DOSAGE, AND IF HE GETS THAT SICK AGIN HE WILL TAKE NO MORE, ACCORDING TO STUDIES ON THIS IT WILL ONLY ADD 4-5 MONTHS, I SAY LETS NOT DO IT AND HAVE A GOOD QUALITY OF WHAT TIME WE HAVE LEFT TOGEATHER, BUT THATS NOT MY CALL.

    SO HON HANG IN THERE, YOU WILL BE IN MY PRAYERS.

    KATH
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #7
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    1231kath said:

    CHER, ITS HEALTHY FOR YOU TO
    CHER, ITS HEALTHY FOR YOU TO JUST LET IT OUT, ANYTHING YOU SAY IS NOT DUMP, WE AS CAREGIVERS GO THROUGH ALOT, MY HUSBAND IS IN STAGE4 OF PROSTATE CANCER HE IS STILL UP AND ABOUT WHEN HE IS HAVING A GOOD DAY, WE R ON THE NEWEST AND LAST CHEMO HE CAN HAVE, THE FIRST TEATMENT WAS AWFUL, HE SAID HE WOULD TAKE ONE MORE, THEY ARE GOING TO LOWER DOSAGE, AND IF HE GETS THAT SICK AGIN HE WILL TAKE NO MORE, ACCORDING TO STUDIES ON THIS IT WILL ONLY ADD 4-5 MONTHS, I SAY LETS NOT DO IT AND HAVE A GOOD QUALITY OF WHAT TIME WE HAVE LEFT TOGEATHER, BUT THATS NOT MY CALL.

    SO HON HANG IN THERE, YOU WILL BE IN MY PRAYERS.

    KATH

    Pain
    I read all of the posts in this thread and feel your pain. As many of you know my husband passed away in October, 2009 after a six year battle with colon cancer. He chose to buy as much time as possible and went through many chemos, radiation, surgeries, and targeted meds and had several recurrences. It really is a roller coaster ride with many downs. We learned to cherish the ups, though. It is a new normal and that normal keeps changing. My new normal now is grief, but I am learning to deal with that and move forward. Cancer effects the entire family and the role of caregiver is very hard. My husband used to tell me that my job was harder than his. Once when I told him I wished it was me with cancer and not him, he told me that was selfish. He didn't think he could deal with losing me. I don't know which role is harder, but I do know how hard it is to watch our loved ones sick and in pain. We question ourselves constantly, wondering if we are doing the right thing or everything we should be doing. We worry about the future and all the things that need doing in the present. We go through all the emotions, anger, sadness, stress, you name it. We grieve the life we had and expected to have. This wasn't our plan or the future we wanted. Cancer changes so many things. What it doesn't change is the love. Just keep that in front of you. Do the best you can at the time. Hang on. Celebrate the good times. Even a hug or smile makes good memories. Take care everyone, and remember that there are many here who understand your pain. Come talk to us. Sharing and venting helps. Fay
  • kimmygarland
    kimmygarland Member Posts: 312
    #8
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    grandmafay said:

    Pain
    I read all of the posts in this thread and feel your pain. As many of you know my husband passed away in October, 2009 after a six year battle with colon cancer. He chose to buy as much time as possible and went through many chemos, radiation, surgeries, and targeted meds and had several recurrences. It really is a roller coaster ride with many downs. We learned to cherish the ups, though. It is a new normal and that normal keeps changing. My new normal now is grief, but I am learning to deal with that and move forward. Cancer effects the entire family and the role of caregiver is very hard. My husband used to tell me that my job was harder than his. Once when I told him I wished it was me with cancer and not him, he told me that was selfish. He didn't think he could deal with losing me. I don't know which role is harder, but I do know how hard it is to watch our loved ones sick and in pain. We question ourselves constantly, wondering if we are doing the right thing or everything we should be doing. We worry about the future and all the things that need doing in the present. We go through all the emotions, anger, sadness, stress, you name it. We grieve the life we had and expected to have. This wasn't our plan or the future we wanted. Cancer changes so many things. What it doesn't change is the love. Just keep that in front of you. Do the best you can at the time. Hang on. Celebrate the good times. Even a hug or smile makes good memories. Take care everyone, and remember that there are many here who understand your pain. Come talk to us. Sharing and venting helps. Fay

    Grandmafay
    Thank you for your post and the reminder to cherish the ups. I guess right now would be an up for us as we are in a waiting stage and my husband is feeling pretty good. But we are so nervous and stressed over the WAITING we can't enjoy it. Ugh. I am so scared I will find myself in your shoes. This is all so damn scary and frustrating. And it affects the whole family. Our son just graduated from college and he's afraid to get a full time job because we don't know how much he'll be needed in the months ahead. He got a job today with a courier service that allows him some flexibility - but he wants to coach/teach and is afraid to pursue that real seriously at the moment until we know what is happening with his Dad. He is living at home with us, and I know he wants to move out, but doesn't want to leave me alone to care for his Dad. (love the boy - he is a wonderful, helpful, caring son)

    I guess the scariest thing of all is we will go through all this again, whether it be surgery, more chemo, more radiation, whatever, and it could very well still end badly. Docs say no - he still has a good chance, especially since it has not spread past the throat, but yeah, whatever, that's what they said the first time. Argh.

    My apologies - I try to be positive - but I'm tired and not feeling too positive today.

    Chin up....
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #9
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    kimmygarland said:

    Grandmafay
    Thank you for your post and the reminder to cherish the ups. I guess right now would be an up for us as we are in a waiting stage and my husband is feeling pretty good. But we are so nervous and stressed over the WAITING we can't enjoy it. Ugh. I am so scared I will find myself in your shoes. This is all so damn scary and frustrating. And it affects the whole family. Our son just graduated from college and he's afraid to get a full time job because we don't know how much he'll be needed in the months ahead. He got a job today with a courier service that allows him some flexibility - but he wants to coach/teach and is afraid to pursue that real seriously at the moment until we know what is happening with his Dad. He is living at home with us, and I know he wants to move out, but doesn't want to leave me alone to care for his Dad. (love the boy - he is a wonderful, helpful, caring son)

    I guess the scariest thing of all is we will go through all this again, whether it be surgery, more chemo, more radiation, whatever, and it could very well still end badly. Docs say no - he still has a good chance, especially since it has not spread past the throat, but yeah, whatever, that's what they said the first time. Argh.

    My apologies - I try to be positive - but I'm tired and not feeling too positive today.

    Chin up....

    Waiting
    Waiting is the hardest part sometimes. Once you know what is going on, you can have a plan. We like to have some control of our lives, or at least we like to think we have some control. For many of us, the greatest fear we have is losing our loved ones. I know it was mine. You need to remember, though, they are finding new treatments for all the time. More and more people are living with cancer as opposed to dying from it. Doug and I were blessed with much more time than we expected. I take comfort in that. We also had a very supportive family, church family, and friends. Our sons are grown, have families of their own, and live a little over an hour away. Yet they were always there when we needed them. About being positive, positive is different in different circumstances. We decided after the first recurrence that we could better handle things by just expecting the cancer to come back. Some thought we were not being very positive. We felt that we were being realistic. Doug did have a very positive outlook. He wanted to buy as much time as possible and make lots of memories. We did that. His mantra, by the way, was PPMM. That stood for the Power of Prayer and Modern Medicine. That kept him going. Fay
  • cher8871
    cher8871 Member Posts: 64
    #10
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    damn MRSA
    well, we've had to put off putting the port in for the Avastin. he has MRSA and it showed up on his right arm...have him on clindamycin for now. it was DISGUSTING!!!!!! nasty stuff that came out of his arm.....i just hope for the best. i want him to have a dignity and quality to whatever life he has left. i know i probably sound like i have given up....i have NOT but it seems for every step forward, we take 3 back since the day he was diagnosed. he sleeps ALOT these days....around 21 hours a day off and on. cancer really does SUCK!

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