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Old 03-17-2017, 08:53 AM
 
Location: Sneads Ferry NC/Randolph NJ/Cape Coral FL
12,925 posts, read 24,052,828 times
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My husband passed on March 6th after a 13 month battle with stage 4 renal cancer.

I sit here now and second guess every decision I made regarding his health care when he no longer could. if I did this instead of that he might still be here.

Back on Feb 23rd his MRI showed 4 new tumors on his brain, 2 of them 2 inches. They wanted to do full brain radiation 5 days a week for 4 weeks and I said enough already, now I wonder if I made the right choice. Guess I will always second guess this.
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Old 03-17-2017, 09:16 AM
 
Location: In a house
21,902 posts, read 20,895,074 times
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You are not alone my friend. My husband was diagnosed with ALS. He ended up on a feeding tube, on a ventilator, and I administered his medications. His life was in my hands (of course God never left my side but at the time I felt pretty alone). He lost all use of his arms, hands legs and bodily functions. I never left his side. I slept on a mattress under his hospital bed in our home. At the time I always felt it was never enough or I was not doing it right. When Hospice stepped in to help they reassured me that I was doing a very good job but I still second guessed myself. I think since it has been over 2 years now I am more accepting of the facts. We can do our best and that is all we can do. You did not make the health care decisions on your own even though you may have felt like it. Your husbands doctors were there too. Even if you had agreed to do the full brain radiation would it really have helped and for how long? You saved him from the possibility of suffering a longer and very possibly worse pain. If it were me in your husbands shoes I would thank you for loving me and caring!
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Old 03-17-2017, 12:19 PM
 
4,316 posts, read 2,148,130 times
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Quote:
Originally Posted by cynwldkat View Post
You are not alone my friend. My husband was diagnosed with ALS. He ended up on a feeding tube, on a ventilator, and I administered his medications. His life was in my hands (of course God never left my side but at the time I felt pretty alone). He lost all use of his arms, hands legs and bodily functions. I never left his side. I slept on a mattress under his hospital bed in our home. At the time I always felt it was never enough or I was not doing it right. When Hospice stepped in to help they reassured me that I was doing a very good job but I still second guessed myself. I think since it has been over 2 years now I am more accepting of the facts. We can do our best and that is all we can do. You did not make the health care decisions on your own even though you may have felt like it. Your husbands doctors were there too. Even if you had agreed to do the full brain radiation would it really have helped and for how long? You saved him from the possibility of suffering a longer and very possibly worse pain. If it were me in your husbands shoes I would thank you for loving me and caring!
evidently that very expensive ALS drug your husband was on did very little good ?


I asked because my wife and I opted out of it after her neurologist claimed it was of little help.
I have yet to hear anyone claim it really helped.
The best I heard was it put the ALS disease on a decline or a plateau for a month or so, then the rapid decline continued.
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Old 03-17-2017, 01:00 PM
bg7
 
7,698 posts, read 7,627,262 times
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Quote:
Originally Posted by njkate View Post
My husband passed on March 6th after a 13 month battle with stage 4 renal cancer.

I sit here now and second guess every decision I made regarding his health care when he no longer could. if I did this instead of that he might still be here.

Back on Feb 23rd his MRI showed 4 new tumors on his brain, 2 of them 2 inches. They wanted to do full brain radiation 5 days a week for 4 weeks and I said enough already, now I wonder if I made the right choice. Guess I will always second guess this.
I wouldn't second guess that - 2 x 2 inch brain tumors??
Although the medical professionals are obliged to offer treatment, at that point it was certainly sensible, and indeed compassionate, to stop a hugely life quality-depleting treatment that would buy at average a few weeks with a lot of misery and suffering for the patient. On top of stage 4..


You made the right choice. 100 yrs ago, you wouldn't of even have to of made it, but you made the right one.
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Old 03-17-2017, 01:47 PM
 
Location: Las Vegas
13,432 posts, read 24,204,419 times
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Of course you second guess everything! I remember telling my H over and over that he didn't look good and it was obvious he wasn't feeling well. I asked, urged, and even begged him to get medical help but I think he knew it was his heart because of his family history and his symptoms. He had been laid off, he was an engineer, and in the end I guess he was more afraid of being in debt for medical bills than he was of dying. So he died.

He probably just needed a stent in his heart but it probably would have ended up costing 50 or 60K and he felt we couldn't afford it.
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Old 03-17-2017, 06:41 PM
 
Location: Somewhere in northern Alabama
16,841 posts, read 51,301,408 times
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Second guessing is completely normal. In part, it is an automatic function of the brain that has roots in survival and goes well outside of the immediate personal experience. Imagine back to a stone age tribe, where Ogg dies because of eating a certain plant. His mate second guesses events leading to his death and warns others in the tribe away from that plant. That characteristic of second-guessing, of looking at the events around the death of a loved one intensely, and thinking "what if?" is hard-wired and much of the reason humans survived through the ages.

The reality is usually that; given what you knew at the time, given the amount your own mind was able to function under stress, you did what you thought was best. That is all there is, that is all anyone can do. Treat yourself with compassion.
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Old 03-17-2017, 09:13 PM
 
3,962 posts, read 5,247,246 times
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Quote:
Originally Posted by njkate View Post
My husband passed on March 6th after a 13 month battle with stage 4 renal cancer.

I sit here now and second guess every decision I made regarding his health care when he no longer could. if I did this instead of that he might still be here.

Back on Feb 23rd his MRI showed 4 new tumors on his brain, 2 of them 2 inches. They wanted to do full brain radiation 5 days a week for 4 weeks and I said enough already, now I wonder if I made the right choice. Guess I will always second guess this.
A friend had full brain radiation because of metastasized tumors from breast cancer. After that, her brain gradually degraded so that she could no longer walk, had dementia, and all kinds of other complications. It got rid of the cancer in her brain but put her into a nursing home because she became so disabled.

My husband's oncologist said that full brain radiation almost always leads to "brain rot" (his name for it.) My husband didn't have that, thank goodness, but had specifically targeted radiation for his tumors.

Really, you should not try to second guess your decisions. Guilt is not a good way to live, especially when dealing with the grief of losing your husband. Was your husband able to participate in the decisions? It is always best when this can happen, but it isn't always possible. Be kind to yourself; understand that you did the best you could.

My condolences on the loss of your husband.
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Old 03-18-2017, 04:59 AM
 
Location: In a house
21,902 posts, read 20,895,074 times
Reputation: 14817
Quote:
Originally Posted by David A Stone View Post
evidently that very expensive ALS drug your husband was on did very little good ?


I asked because my wife and I opted out of it after her neurologist claimed it was of little help.
I have yet to hear anyone claim it really helped.
The best I heard was it put the ALS disease on a decline or a plateau for a month or so, then the rapid decline continued.
Exactly what we learned! He did try the drug but once we learned about what little it did and the side effects we decided to stop. Not to mention the price! So far I have not heard of any real drugs that helps with ALS. I have not kept up on it so I could be wrong--I hope so!
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Old 03-18-2017, 07:38 AM
 
Location: Sneads Ferry NC/Randolph NJ/Cape Coral FL
12,925 posts, read 24,052,828 times
Reputation: 10739
Quote:
Originally Posted by G Grasshopper View Post
A friend had full brain radiation because of metastasized tumors from breast cancer. After that, her brain gradually degraded so that she could no longer walk, had dementia, and all kinds of other complications. It got rid of the cancer in her brain but put her into a nursing home because she became so disabled.

My husband's oncologist said that full brain radiation almost always leads to "brain rot" (his name for it.) My husband didn't have that, thank goodness, but had specifically targeted radiation for his tumors.

Really, you should not try to second guess your decisions. Guilt is not a good way to live, especially when dealing with the grief of losing your husband. Was your husband able to participate in the decisions? It is always best when this can happen, but it isn't always possible. Be kind to yourself; understand that you did the best you could.

My condolences on the loss of your husband.
That was my biggest fear. After consulting with radiologist I ran it by his oncologist who said you need to understand, full brain radiation for that duration is also going to "kill the good guys in the brain as well", thats when I decided he had enough and I promised him when he was still very lucid no heroics to keep him here.

There is a part of me that knows I made the right choice but also a nagging part that questions if I did everything I could.
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Old 03-18-2017, 08:28 AM
 
Location: NW Nevada
13,341 posts, read 10,898,841 times
Reputation: 12285
Quote:
Originally Posted by njkate View Post
My husband passed on March 6th after a 13 month battle with stage 4 renal cancer.

I sit here now and second guess every decision I made regarding his health care when he no longer could. if I did this instead of that he might still be here.

Back on Feb 23rd his MRI showed 4 new tumors on his brain, 2 of them 2 inches. They wanted to do full brain radiation 5 days a week for 4 weeks and I said enough already, now I wonder if I made the right choice. Guess I will always second guess this.

Second guessing is inevitable in such situations. So sorry for your los. I do understand. I had to make some decisions a while back that had to do with both mental and physical health issues of a serious nature for my lady. Under rather emergent conditions. It worked out in the end but I always still wonder if I could have prevented it from happening at all had I done some things different. One certain thing I just KNOW wouldn't have happened had a done a couple things different. I didn't know that at the time, but it still et me up every day.


No, you are not alone. Not at all. Second guessing, hindsight, "had I just KNOWN", guilt feelings and grief. That's a nasty mix. I sincerely pray you have a good support system as you deal with this. It is a very heavy burden to carry all that around. What you're feeling is perfectly normal. I don't think that anyone who has been in such a difficult situation just has no doubts and never looks back. If there is such a person, I would be dubious about their ....moral character.


Again, my sympathy, and empathy are extended. I pray you find some peace and have some caring support to help you get there.
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