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faithbarbalace
faithbarbalace Member Posts: 15
in Ovarian Cancer #1
July 21, 2011 - 1:25am


> I have been asking for a detailed description of what to expect, physically , on progression of a dying patient. I have always walked my life in gratitude and love.I am not ready to die....but I know that I am. With never having more than 4months remission.I am fearful of the unknown part. I am good with the dying part of it, struggling with the suffering the unknown. Am I asking an imposible to answer question? Whenever I have had something happen that others see as horrible , I dont see that. I simply ask what next? Just do what is necessary, because it is what it is. Am I being morbid or weird, because no one will answer me

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  • carolenk
    carolenk Member Posts: 907 Member
    #2
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    I've been with dying people
    I've been with dying people many times. So I think about how I will go out when it is my time to go. Of course I'm gonna enroll in hospice. You can't take chemo & be in hospice unless the chemo is considered palliative rather than curative. It's because of money issues I think.

    Anyway, the hospice nurses are usually very helpful just as much for the family as for the person who is making the transition. I'm gonna expect to be given whatever drugs it takes to keep me sedated & painfree. I'm gonna stop eating & drinking. I'll be listening to whatever is being said although I won't join in the conversation (finally someone will finish their sentence without being interrupted!).

    I'll probably be in a hospital bed at home if I'm lucky to be able to die peacefully & stay out of the hospital. If I have a bowel obstruction, there are drugs that can be given to stop the bowel spams & pain (I already did a Google search on how to treat a bowel obstruction in a hospice patient). My family will lay their hands on my to ease my suffering & help me feel their love. I hope there there is a lot of laughter & storytelling going on around me. I'll be listening to Enya or whatever beautiful music my husband chooses to play (if I'm lucky enough to precede himin death).

    I'll probably be around for 3 to 7 days after I stop eating depending on how much fat I have left in my body. Then I'm gonna stop breathing & go sit with Jesus (just like in the book Heaven is for Real).
  • faithbarbalace
    faithbarbalace Member Posts: 15
    #3
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    carolenk said:

    I've been with dying people
    I've been with dying people many times. So I think about how I will go out when it is my time to go. Of course I'm gonna enroll in hospice. You can't take chemo & be in hospice unless the chemo is considered palliative rather than curative. It's because of money issues I think.

    Anyway, the hospice nurses are usually very helpful just as much for the family as for the person who is making the transition. I'm gonna expect to be given whatever drugs it takes to keep me sedated & painfree. I'm gonna stop eating & drinking. I'll be listening to whatever is being said although I won't join in the conversation (finally someone will finish their sentence without being interrupted!).

    I'll probably be in a hospital bed at home if I'm lucky to be able to die peacefully & stay out of the hospital. If I have a bowel obstruction, there are drugs that can be given to stop the bowel spams & pain (I already did a Google search on how to treat a bowel obstruction in a hospice patient). My family will lay their hands on my to ease my suffering & help me feel their love. I hope there there is a lot of laughter & storytelling going on around me. I'll be listening to Enya or whatever beautiful music my husband chooses to play (if I'm lucky enough to precede himin death).

    I'll probably be around for 3 to 7 days after I stop eating depending on how much fat I have left in my body. Then I'm gonna stop breathing & go sit with Jesus (just like in the book Heaven is for Real).

    god bless u for speaking your mind
    I happened to agree and relate to everything you said. Like i said i got that part. What i need to know is the part from chemo being worse than the disease, what body does. If i refuse chemo, let it take a natural course, what can i expect. Is there an average time when cancer will get to the point of recieving hospice.
  • carolenk
    carolenk Member Posts: 907 Member
    #4
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    faithbarbalace said:

    god bless u for speaking your mind
    I happened to agree and relate to everything you said. Like i said i got that part. What i need to know is the part from chemo being worse than the disease, what body does. If i refuse chemo, let it take a natural course, what can i expect. Is there an average time when cancer will get to the point of recieving hospice.

    Sorry I didn't understand
    Sorry I didn't understand what you were asking about. You already figured out the end, now you want to know how close to the end you are.

    You can be full of cancer and live for quite a long time. It all depends on what major organs are involved and how bad the ascites is and how fast you waste away. If you have cancer in a lymph node near a major blood vessel, when the cancer erodes into the blood vessel, you bleed to death--that's a quick way to go.

    If you are ready to stop chemo, you will move into another phase of your life...I think you can still work on healing without chemo. Sorry, no one can tell you how long you will live before the cancer or the chemo kills you. The cachexia is the biggest problem. There is something called hydrazine sulfate that has been used to help prevent that but you need to be under an alternative doctor's care.

    Hospice usually doesn't want to be called in unless you are within six months of your demise. You could ask hospice to interview you and they will probably give you a better idea of what to expect because they will be able to personalize the answer.

    (((hugs)))

    Carolen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #5
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    faithbarbalace said:

    god bless u for speaking your mind
    I happened to agree and relate to everything you said. Like i said i got that part. What i need to know is the part from chemo being worse than the disease, what body does. If i refuse chemo, let it take a natural course, what can i expect. Is there an average time when cancer will get to the point of recieving hospice.

    It depends on how aggressive
    It depends on how aggressive your disease is, for one thing. You could have six months, if your disease is not terribly aggressive and you have not yet started showing symptoms of end-stage, such as ascites, jaundice, etc.

    It's a personal decision and I understand why you might consider rejecting more chemo, but unless I had a very, very poor quality of life, I would accept the treatment. But that's just me.

    I would never consider going "cold turkey", however - meaning without Hospice support. Cancer can be a very painful death. Not always, but it can be. Depends on what organ systems are involved.

    My experience with chemo has been a love/hate relationship. I never considered it "worse than the disease", in fact, I think dying is worse than chemo. But then, I've never died, so don't take my word for it.

    Carlene
  • faithbarbalace
    faithbarbalace Member Posts: 15
    #6
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    Hissy_Fitz said:

    It depends on how aggressive
    It depends on how aggressive your disease is, for one thing. You could have six months, if your disease is not terribly aggressive and you have not yet started showing symptoms of end-stage, such as ascites, jaundice, etc.

    It's a personal decision and I understand why you might consider rejecting more chemo, but unless I had a very, very poor quality of life, I would accept the treatment. But that's just me.

    I would never consider going "cold turkey", however - meaning without Hospice support. Cancer can be a very painful death. Not always, but it can be. Depends on what organ systems are involved.

    My experience with chemo has been a love/hate relationship. I never considered it "worse than the disease", in fact, I think dying is worse than chemo. But then, I've never died, so don't take my word for it.

    Carlene

    omg!
    ladies thaaaaank you! this is exactly what I have been asking for nearly 5 yrs. you answered my perfectly . god bless u both!
  • faithbarbalace
    faithbarbalace Member Posts: 15
    #7
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    carolenk said:

    Sorry I didn't understand
    Sorry I didn't understand what you were asking about. You already figured out the end, now you want to know how close to the end you are.

    You can be full of cancer and live for quite a long time. It all depends on what major organs are involved and how bad the ascites is and how fast you waste away. If you have cancer in a lymph node near a major blood vessel, when the cancer erodes into the blood vessel, you bleed to death--that's a quick way to go.

    If you are ready to stop chemo, you will move into another phase of your life...I think you can still work on healing without chemo. Sorry, no one can tell you how long you will live before the cancer or the chemo kills you. The cachexia is the biggest problem. There is something called hydrazine sulfate that has been used to help prevent that but you need to be under an alternative doctor's care.

    Hospice usually doesn't want to be called in unless you are within six months of your demise. You could ask hospice to interview you and they will probably give you a better idea of what to expect because they will be able to personalize the answer.

    (((hugs)))

    Carolen

    thank u
    July 21, 2011 - 1:43pm

    thank u
    new

    I do have the end plans in order. that is not my issue. I was diagnosed in 2007 with ovarian, originating in the peritinerial wall. yes stage IV , already mastitized,and yes already running through lymphs. 5 surgeries, doing the 6th go round of chemo now. never had more than 4 months remission. I have not given up on chemo yet. It has been working to keep at bay. My question is about the physical progression, when the chemo regime is worse than having the disease. I will want to stop, or if they want to cut me again. cant bring myself to deal with specifically, anything like wearing the bag. I cant see allowing someone to keep taking pieces of me, and not have to benifit of being cured. I am leary of things that i dont know. I want a doctor or anyone to say well when it gets to your liver expect this, or when it reaches your lungs, expect that. I am not asking anyone to try to predict the future, these I thought were reasonable medical questions????? I am kool with god and all his plans for me. At the end has already been planned.
  • carolenk
    carolenk Member Posts: 907 Member
    #8
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    faithbarbalace said:

    omg!
    ladies thaaaaank you! this is exactly what I have been asking for nearly 5 yrs. you answered my perfectly . god bless u both!

    There's another discussion
    There's another discussion board for peritoneal cancer and it might be helpful for you to check in with them, too. I have a feeling you have more time than you think.

    (((hugs)))

    Carolen
  • kayandok
    kayandok Member Posts: 1,202 Member
    #9
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    Fear of the unknown
    I think that is the nature of fear. If we knew what to expect, we would not be afraid, probably. I have "witnessed" quite a few of my sisters die in the last 4 years. As Carlene mentioned, it all depends on where your tumors are, as to time and pain etc. The good news is, most of my sisters have not been in pain, thanks to the hospice care.

    I was dx 4 years ago, 3C, stage 3 and have also had several surgeries and lot's of chemo. I had an 8 month remission in the beginning, but been on chemo ever since. I have often thought about the end, and planned, in my mind the way I would try and orchestrate it. The reality is that, I can't control it, and will have to face some realities as they present themselves.

    I don't think you are being morbid, only trying to face your reality and take control of your life, the best you can. That way, you can let go of the fear, and enjoy the LIFE that is left.

    Hugs,
    kathleen

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