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didi02453
New User
Joined: 02 May 2006
Posts: 3
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 Posted: Tue May 09, 2006 7:43 am Post subject: "How much time do I have?" |
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That seems to be THE question when anyone is faced with a terminal illness. And I think the doctors seem to pull numbers right out of the air.
My friend's primary doctor initially told him 3-5 years -- this was VERY unrealistic and unhelpful, and was obviously based in ignorance. But my friend clung to those numbers until they were wrenched away from him.
The next time we saw that same doctor, he said "1-2 years at the outside -- but realistically, not too many people make it that long." Hd did say one helpful thing ''Hope for years, but make your plans based on months."
I've heard that when an oncologist says "1-2 months" the patient hears only "2 months" -- 3-6 months, they hear only "6 months" - etc.
When we saw the oncologist, he said 6-18 months -- which I think is STILL way outside any reasonable time range I'm seeing in the literature or reading on this forum. Six weeks ago, my friend was a healthy 55 year old with a responsible job and a rich, full, life. Since then, he has been diagnosed, has lost 20+ pounds, has developed about a zillion nasty symptoms, has had repeated problems with clots, and has had a heart attack. Given the incredible speed of his decline, I'm just not seeing another year or year and a half here!
I'm also worried about simple practical stuff - my friend wants to change his will, etc... but he thinks he has lots of time to take care of those details. I'm not so sure. And in addition to being his health care proxy, I'm his executor -- and I have visions of *years* of conflict with his siblings if he does not make clear arrangements prior to his death.
I know it's not reasonable to expect that a doctor's crystal ball will say N months, that those N months will be evenly good quality (or possibly a gentle, gradual decline), and that the death will come on the assigned date. I do know that. But on the other hand -- it seems like in an effort to give patients hope, the doctors swing way out there on their estimates -- and I'm sorry, but I find that neither fair nor helpful.
About the only medical folks I trust are hospice nurses -- toward the end, I have found that they have almost uncanny ability to see the timeline of the person's illness.
I woke up weepy and grumpy and generally distressed, and I'm rambling here. I will stop now.
Didi |
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freeio
Senior User
Joined: 20 Dec 2004
Posts: 116
Location: Guntersville, Alabama
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| Posted: Tue May 09, 2006 9:00 am Post subject: Unfortunately, doctors largely shoot in the dark. |
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Didi,
One of the most important lessons I have taken from my own cancer experience is that the doctors really do not know as much as the patient would like. Even with the best doctors, facilities, and tools, they cannot see what is really going on inside of a person.
In September of 2004 I was given three months at the outside to live, and yet I am still here. As I continue to go from one stage to the next, and go through one test after another, the doctors have a hard time agreeing on what is happening inside of me, and even less agreement as to what should be done. As troubling as this is, yet I know that they are doing their best to get me through this.
My advice it to make sure that important things get done quickly. When my dad went through all of this, he waited too long to take care of the legal matters, and then was not considered competent to sign legal documents. It made certain things very difficult. As a result, as soon as I was diagnosed with cancer, my wife and I went straight to the lawyer's office and made sure every required legal document was correct and properly signed and witnessed. This is very important, and absolutely must not be put off.
I am sorry to hear of your friend's troubles. Stand by her/him as best you can, and your presence will be most appriciated.
Cheers!
Marty
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html |
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jenjoey
New User
Joined: 23 Apr 2007
Posts: 7
Location: Louisiana
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| Posted: Mon Apr 23, 2007 12:54 am Post subject: Re: "How much time do I have?" |
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Marty,
I am SO NEW to all of this and I looked up a forum just to see what was being said. I REALLY almost left until I read about your experience.
I met the LOVE OF MY LIFE JOEY when I was 16 y/o........ things happened and of course we went our separate ways. RECENTLY (December) we reconnected and are now engaged to be married. I know he was diagnosed right befor Katrina (he was 27 y/o)....... with PC. We haven't even really had any serious discussions about him "being sick" as he refers to it. I don't want to upset him with the feelings I have about it (because I think that is selfish of me). So I am looking for somewhere I might find comfort (somewhat) from people who are dealing with this most horriable illness.
Jen[/quote] |
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