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Old 04-17-2008, 01:07 PM   #1
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Join Date: Aug 2007
Location: US
Posts: 7
SingleGirl HB User
I'm new, I'd love to hear experiences of others if you get time...

First of all, as far as I know, we do not have a diagnosis of cancer at this time and I pray it stays that way. I'm here b/c I want to better understand the process involved in care so I can know what to expect and what questions I should be asking...

My dad first went into the hospital for severe gall bladder issues last fall. Back in the hospital last month w/a mass on his pancreas 3x the size of his pancreas. Now, weeks passed, got an external drain. Back in the hospital w/several infections and now, reports of new masses on prostate, bladder, and spleen.

I'd like to know the experiences of care you've all had throughout this process. As much as I'm trying to have faith and respect the system... I can't help but wonder if they aren't letting my dad get more and more sick b/c he doesn't have insurance or money and was rejected for Medicaid. He only has his VA benefits.

How much waiting is normal in between tests? How much waiting is normal in between appointments?

I don't know how much of this is just me knowing too much about how sometimes people do slip through the cracks and how much of this is just me being a daughter who is so very, very scared.

From first sight of the mass until today has been almost 2 months. It took about 6 weeks to get the drain and the mass had grown another 4 cm by then and was joined by a half dozen other pancreatic cysts.

Thank you so much for allowing me to share. Any info is appreciated.

Last edited by mod_007; 05-08-2008 at 12:03 PM. Reason: See posting rules - do not post claims about specialist knowledge

 
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Old 04-23-2008, 04:14 PM   #2
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Join Date: Mar 2007
Location: Lydia, SC USA
Posts: 80
gpgscott HB User
Re: I'm new, I'd love to hear experiences of others if you get time...

Hi, I saw your post a day or so when I first returned to this site and did not know what to make of it.

Your situation is not conventional.

What you are describing with your dad does not sound like prostate cancer, it sounds like some other sort of cancer process that is involving many internal organs.

I am sorry if you think you are not receiving appropriate treatment. Someone has to be the advocate, and if he is not able maybe that needs to be you.

Thanks for posting and I hope you are able to help your father find an appropriate treatment.

Scott

 
Old 05-04-2008, 08:15 PM   #3
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Join Date: Sep 2006
Location: L.A./ Ca. /USA
Posts: 106
jackcc HB User
Re: I'm new, I'd love to hear experiences of others if you get time...

hi single


Your problem doesn't sound like prostate cancer to me either.
I'm with the VA too. We have to remember that there are so many Vets needing medical care that sometimes the wait times are very long. It doesn't mean that they don't care. The doctors are excellent and very professional. And they do care. Some procedures require a longer wait time than others. Its not like going to private doctor. You do have a right to push things a little. Find out who runs your VA facility and talk to them. Waiting time varies with the problem and the needed treatment for it. Some wait times are months. And never miss an appointment because it'll be a long time to the next appointment. I hope your dad and you will be okay. Two months is a short wait and "six weeks" means the hopping right on it. I know its stressful for you. But they won't forget your Dad.

Last edited by jackcc; 05-04-2008 at 08:21 PM. Reason: add to

 
Old 05-07-2008, 11:42 PM   #4
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Join Date: Aug 2007
Location: US
Posts: 7
SingleGirl HB User
Re: I'm new, I'd love to hear experiences of others if you get time...

Thank you so much. Both posts were very helpful... My dad is very resistant, to the point of cruel verbal abuse, to anyone stepping in and trying to be an advocate for him... and it hurts.

The last 48 hrs, he has been spiking a fever and won't get out of bed, but refuses to go back to the hospital. He just won't listen to what we have to say.

I'm trying really hard to be respectful of his decisions right now, but after 3 weeks of it, I lost my temper really badly 2 nights ago and said some horrible, hurtful things to him...

This process is just awfully difficult and he's keeping all of us at a distance... and it's hard to respect when we feel so pushed aside.

Sorry to rant, my entire world has changed in the last month, I left my job to help out here and I'm just really disappointed in myself that I said such horrible and awful things to a man who is so sick.

Thanks again, be well.

 
Old 05-08-2008, 10:56 PM   #5
Senior Member
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Join Date: Sep 2006
Location: L.A./ Ca. /USA
Posts: 106
jackcc HB User
Re: I'm new, I'd love to hear experiences of others if you get time...

Being a caregiver is a tough job. I was one for many years. It takes a lot out of you but its still worth it. When we get on in years and sick, its good to have someone to care. Combative as he is, hes' lucky to have a daughter to care for him. As beaten down as he is, he probably doesn't realize how lucky he is. But maybe in time he will. Hang in there and God bless you both.

 
Old 06-03-2008, 02:37 PM   #6
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Join Date: Feb 2008
Location: USA
Posts: 93
vic77 HB User
Re: I'm new, I'd love to hear experiences of others if you get time...

These may not be easy things for you to do, but you must remember this is your dad's life and his decisions; and he may may not choose the things we think or wsh he would. Also, he may getting angry because he feels he is being pushed to make decisions about a condition he has not fully accepted yet. He is an elderly gentleman facing a horrible illness; immagine the decisions he has to make. The best thing you could do for him is just be there for him and lilsten, and if he asks for advice, give it; but for his benifit and yours, don't force your wants and needs onto him, he has enough on his plate.

Vic

 
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