Author Topic: Share your cancer journey - and any other personal medical advice  (Read 196238 times)

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Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #100 on: April 29, 2020, 11:08:54 am »
It's about six months later, how are you feeling now Pete?


@jafo2010

Sorry for the late reply. Just saw your post.

Was doing better,but damned if the chemo brain isn't getting worse. Pressure in my head makes it feel like it wants to explode,and is even affecting my vision.

Think my lungs are filling up again because there is a lot of pressure in my chest,and I am having trouble breathing again.

Had a couple of moments,one right after the other yesterday,where I got so dizzy I thought I was going to faint. At the time I was going inside an Ace Hardware store,and luckily I had a basket to hold onto. Stood still for a few minutes,and it passed.

A hour later I am feeling a "flutter" in my chest again and having more dizzy moments,so I drive a mile to the nearest fire station and they hook me up to a machine that shows my pacemaker is occasionally kicking in to keep my heart beating,but other than than things seem ok. They want to take me to the hospital anyhow,but I refuse,and go back home.

I was sleepy when I got back home so I laid down on the couch to take a nap,and slept between 12-14 hours.

Evidentially I was exhausted from lack of sleep. Probably going to take a nap shortly because I am still sleepy.


Can't remember anything for more than a minute or two before I start forgetting it.
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Offline mountaineer

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Re: Share your cancer journey - and any other personal medical experience
« Reply #101 on: April 29, 2020, 12:11:26 pm »
Let them take you to the hospital @sneakypete , especially if it seems your lungs need to be drained again. Please.
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Offline Bigun

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Re: Share your cancer journey - and any other personal medical experience
« Reply #102 on: April 29, 2020, 12:14:07 pm »
Let them take you to the hospital @sneakypete , especially if it seems your lungs need to be drained again. Please.

I second that motion @sneakypete
"I wish it need not have happened in my time," said Frodo.

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Offline skeeter

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Re: Share your cancer journey - and any other personal medical experience
« Reply #103 on: April 29, 2020, 12:30:46 pm »
@jafo2010

Sorry for the late reply. Just saw your post.

Was doing better,but damned if the chemo brain isn't getting worse. Pressure in my head makes it feel like it wants to explode,and is even affecting my vision.

Think my lungs are filling up again because there is a lot of pressure in my chest,and I am having trouble breathing again.

Had a couple of moments,one right after the other yesterday,where I got so dizzy I thought I was going to faint. At the time I was going inside an Ace Hardware store,and luckily I had a basket to hold onto. Stood still for a few minutes,and it passed.

A hour later I am feeling a "flutter" in my chest again and having more dizzy moments,so I drive a mile to the nearest fire station and they hook me up to a machine that shows my pacemaker is occasionally kicking in to keep my heart beating,but other than than things seem ok. They want to take me to the hospital anyhow,but I refuse,and go back home.

I was sleepy when I got back home so I laid down on the couch to take a nap,and slept between 12-14 hours.

Evidentially I was exhausted from lack of sleep. Probably going to take a nap shortly because I am still sleepy.


Can't remember anything for more than a minute or two before I start forgetting it.

Well dangit, get some rest. And keep us posted.

Offline Gefn

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Re: Share your cancer journey - and any other personal medical experience
« Reply #104 on: April 29, 2020, 12:31:35 pm »
Oh dang @sneakypete

Please feel better. I hate thinking of you being sick.
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Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #105 on: April 29, 2020, 01:21:27 pm »
I second that motion @sneakypete

Let them take you to the hospital @sneakypete , especially if it seems your lungs need to be drained again. Please.

@mountaineer   @Bigun

There are a couple of problems with this. One is the local docs will stick a needle in my back and drain the lungs,but won't put in a drain tube. Each time they stick a needle in my chest,it costs me a lot of money I don't have to pay the fees because it is considered to be an ER procedure and the VA claims I need to go to a VA hospital to have this done. I am an Agent Orange veteran so I can't buy any supplemental insurance,and medicare doesn't pay it all.

The VA refuses to pay for any of my recent surgeries or operations because I didn't get prior approval. I didn't get prior approval because I went there to the ER in an ambulance,and to get approval I would have had to call a number in another state and asked permission first. I didn't have that number,and frankly,had other things on my mind at that time.

It's irrelevant,anyhow. It's an excuse the VA uses,not an actual reason. I have been through this with them before. They stall and stall until most vets are so afraid of losing their credit that they pay out of pocket to keep the phone calls and letters from happening because they just add stress.

I put my new congresscritter on this a couple of months ago,and have heard nothing from his office. The guy before him died,but he wouldn't have hesitated an instant to get pushy with them if he needed. This guy is new and knows nobody,is owned favors by nobody,and his staff doesn't seem to really care. Maybe I am wrong and they are working in the background? Maybe it is even partially my fault for not following up on it and reminding them once a week?

This is possible because due to chemo brain,I had forgotten all about it until the telephone calls and letters from collection agencies started arriving.

Temporary break. Finish the post in a few minutes.

 Ok,sorta back again.

Another part of the reason is I can't afford to pay for another ER visit,in addition to the doctors fees.

I WILL do this if it gets as bad as it was a year ago,but I'm not there yet,and still hoping the VA kicks in before I have to do it.

It is ridicilous for the VA to insist I drive to another state and back to get a simple procedure done that I can get done at a local hospital. Especially since there is no such thing as driving to a VA hospital for an emergency procedure. You MUST have an appointment for any type of surgery.

Any emergency patient that walks in their door gets put in an ambulance and sent to a local hospital,and I can do that at home and save a lot of time,money,and grief.

BUT......,as I said above,when it gets really bad again,I will go to the local ER to have it done and get billed again. Bad as it is,it is MUCH better than driving a couple of hours and then get so mad I want to choke somebody out. Especially since I no longer have the wind to chase the bastards down.
« Last Edit: April 29, 2020, 01:31:24 pm by sneakypete »
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Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #106 on: April 29, 2020, 01:58:52 pm »
@mountaineer   @Bigun  @Gefn  @skeeter

UPDATE!

Just got a email from my congresscritter's office,and it seems that the VA has now agreed to pay THOSE SPECIFIC hospital bills. They are supposed to make an appointment with me soon for me to meet with someone from the hospital to sign papers.

Nothing was said about the other 3 hospitals I was sent to,the surgeons,nurses,and other related fees,but this is,at a minimum,a crack in the dam.
« Last Edit: April 29, 2020, 02:00:28 pm by sneakypete »
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Offline Bigun

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Re: Share your cancer journey - and any other personal medical experience
« Reply #107 on: April 29, 2020, 02:07:25 pm »
@mountaineer   @Bigun  @Gefn  @skeeter

UPDATE!

Just got a email from my congresscritter's office,and it seems that the VA has now agreed to pay THOSE SPECIFIC hospital bills. They are supposed to make an appointment with me soon for me to meet with someone from the hospital to sign papers.

Nothing was said about the other 3 hospitals I was sent to,the surgeons,nurses,and other related fees,but this is,at a minimum,a crack in the dam.

Great news @sneakypete! It's a damned shame veterans have to through all this BS just to get what they need and deserve.
"I wish it need not have happened in my time," said Frodo.

"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."
- J. R. R. Tolkien

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #108 on: April 29, 2020, 02:16:45 pm »
Great news @sneakypete! It's a damned shame veterans have to through all this BS just to get what they need and deserve.

@Bigun

I  honestly hope I am wrong,but the VA is like every other bureaucracy at the top,concerned with their budget more than anything else. As a result,I suspect it is semi-official,handed down from the top but not in writing,to cut every corner they can cut,even going so far as to try to get vets so pissed off they don't come back again for care.

I quit going to the VA Hospital in the early 70's,when a clerk there finally got me so mad I dragged the bastard across his desk and was in the process of choking him out when the security cops grabbed me.

They then decided I had PTSD (I don't,and never did) so they insisted I attend a "PTSD Rap  Session" (no kidding) to discuss my anger issues,and got so mad there at all the posers telling phony war stories about how stressed they were from the war,that I actually stood up and told them all they were a bunch of bleeping posers who were trying to rip the VA off for early retirement checks,and walked out after telling the shrink leading it that he should be ashamed of himself.

Didn't go back to another VA hospital for several years,and it was a different one in a different state.

BTW,I have GOT to write this. One of the worse offenders there was a guy that was the local president of "Point Man International",a professional PTSD group". Know what his job was during the VN war? He was a freaking radio operator on a Navy Destroyer patrolling offshore of VN. He TESTIFIED (yes,just like at a religious meeting) that he was so scared of the VN paddling out to the ship at night,scaling the sides,and sneaking in to murder him in his sleep that he used to sleep with a bayonet beneath his pillow. Don't ask me where a sailor on a destroyer that is a radio operator in their communications shack found a bayonet. I don't have a clue.

His VP? That guy was  a cook with the 101st Abn Divison that "suffered through " a sapper attack on their main fire base. There he was,1 of thousands,potentially facing off with 10-15 sappers. Imagine the horror,knowing that cooks were prime targets for assassinations,right?
« Last Edit: April 29, 2020, 02:22:55 pm by sneakypete »
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Offline Bigun

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Re: Share your cancer journey - and any other personal medical experience
« Reply #109 on: April 29, 2020, 02:21:09 pm »
@Bigun

I  honestly hope I am wrong,but the VA is like every other bureaucracy at the top,concerned with their budget more than anything else. As a result,I suspect it is semi-official,handed down from the top but not in writing,to cut every corner they can cut,even going so far as to try to get vets so pissed off they don't come back again for care.

I quit going to the VA Hospital in the early 70's,when a clerk there finally got me so mad I dragged the bastard across his desk and was in the process of choking him out when the security cops grabbed me.

They then decided I had PTSD (I don't,and never did) so they insisted I attend a "PTSD Rap  Session" (no kidding) to discuss my anger issues,and got so mad there at all the posers telling phony war stories about how stressed they were from the war,that I actually stood up and told them all they were a bunch of bleeping posers who were trying to rip the VA off for early retirement checks,and walked out after telling the shrink leading it that he should be ashamed of himself.

Didn't go back to another VA hospital for several years,and it was a different one in a different state.

I have been fortunate enough to have never once visited a VA facility and hopefully never will.
"I wish it need not have happened in my time," said Frodo.

"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."
- J. R. R. Tolkien

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #110 on: April 29, 2020, 02:24:23 pm »
I have been fortunate enough to have never once visited a VA facility and hopefully never will.

@Bigun

I hope you don't,either.

In all fairness,they are MUCH better today than they were in the 60's and 70's and had all the "Anti VN War" employees and staff. Almost all of those bastards has died or retired by now.

BTW,read my update to the post above this one.
« Last Edit: April 29, 2020, 02:25:53 pm by sneakypete »
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Offline skeeter

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Re: Share your cancer journey - and any other personal medical experience
« Reply #111 on: April 29, 2020, 02:55:37 pm »
@mountaineer   @Bigun  @Gefn  @skeeter

UPDATE!

Just got a email from my congresscritter's office,and it seems that the VA has now agreed to pay THOSE SPECIFIC hospital bills. They are supposed to make an appointment with me soon for me to meet with someone from the hospital to sign papers.

Nothing was said about the other 3 hospitals I was sent to,the surgeons,nurses,and other related fees,but this is,at a minimum,a crack in the dam.
:thumbsup:

Offline Smokin Joe

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Re: Share your cancer journey - and any other personal medical experience
« Reply #112 on: April 29, 2020, 03:00:28 pm »
@jafo2010

Sorry for the late reply. Just saw your post.

Was doing better,but damned if the chemo brain isn't getting worse. Pressure in my head makes it feel like it wants to explode,and is even affecting my vision.

Think my lungs are filling up again because there is a lot of pressure in my chest,and I am having trouble breathing again.

Had a couple of moments,one right after the other yesterday,where I got so dizzy I thought I was going to faint. At the time I was going inside an Ace Hardware store,and luckily I had a basket to hold onto. Stood still for a few minutes,and it passed.

A hour later I am feeling a "flutter" in my chest again and having more dizzy moments,so I drive a mile to the nearest fire station and they hook me up to a machine that shows my pacemaker is occasionally kicking in to keep my heart beating,but other than than things seem ok. They want to take me to the hospital anyhow,but I refuse,and go back home.

I was sleepy when I got back home so I laid down on the couch to take a nap,and slept between 12-14 hours.

Evidentially I was exhausted from lack of sleep. Probably going to take a nap shortly because I am still sleepy.


Can't remember anything for more than a minute or two before I start forgetting it.
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Offline mountaineer

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Re: Share your cancer journey - and any other personal medical experience
« Reply #113 on: April 29, 2020, 05:43:32 pm »
Nothing the VA does surprises me. My late father was injured aboard ship while in blackout conditions during one of those great battles of WWII - I think Okinawa. Both wrists and a few vertebrae crushed. He battled the VA a good part of his life to get a partial disability, then they'd require him to visit the hospital to see a doctor to confirm that he was still disabled. Unfortunately, he never got a doctor who actually spoke English, so it was hard for him to communicate the message that he was in constant debilitating pain.

Near the end of his life, suffering from dementia, he had to go to the VA hospital in order to qualify for some nursing home assistance, and my mother refused to take him to the one closest their house. It had a terrible reputation. She drove him 2 or 3 hours to another VA hospital which, at the time, was pretty good. In recent years it's become notorious for having patients drop dead from insulin overdoses.  *****rollingeyes*****  So infuriating. Our vets deserve better.
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Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #114 on: April 29, 2020, 06:20:03 pm »
Nothing the VA does surprises me. My late father was injured aboard ship while in blackout conditions during one of those great battles of WWII - I think Okinawa. Both wrists and a few vertebrae crushed. He battled the VA a good part of his life to get a partial disability, then they'd require him to visit the hospital to see a doctor to confirm that he was still disabled. Unfortunately, he never got a doctor who actually spoke English, so it was hard for him to communicate the message that he was in constant debilitating pain.

Near the end of his life, suffering from dementia, he had to go to the VA hospital in order to qualify for some nursing home assistance, and my mother refused to take him to the one closest their house. It had a terrible reputation. She drove him 2 or 3 hours to another VA hospital which, at the time, was pretty good. In recent years it's become notorious for having patients drop dead from insulin overdoses.  *****rollingeyes*****  So infuriating. Our vets deserve better.

@mountaineer

I got taken off jump status and was undeployable,so I had to leave SF and go to a conventional army unit,and lose my 55 bucks per month in jump pay in addition to never getting to go anywhere.

To give them credit,the army offered me a medical retirement,but I turned it down because I knew if I took that I would never be allowed back into SF again,and I was so foolish I just assumed I would recover in a year or two,and be able to enlist again. No such luck. Not long after I got out,"Agent Orange" became a "thing",and I was automatically barred from enlistment because of it. I know this to be a fact because I tried. They were even going to let me keep my rank.

More to the point,IIRC,I was drawing something like $39 a month in disability pay in 1970,and because I had a formal disability rating,I was not eligible to draw unemployment pay despite paying into it all my life. Even in 1970 you couldn't even eat on 39 bucks a month.

When I finally did get a Agent Orange disability rating of 30 percent around 1977 or so,it was only a 30 percent rating that only paid about 250 bucks. The good news was the VA pulled my 10 percent disabled rating on my back because combined with the 30 percent for Agent Orange they would have had to pay me almost enough money to live on.

The good news is I took the test for the post office exam again,and when they tried to not hire me based on having a bad back,I waved my official US Goobermint medical determination that I no longer had a bad back to them,and they had to hire me. Managed to work long enough for the post office to retire from there.

It has to be said that the VA of today is 10,000 times better than the VA of the 70's was. All the anti-VN war employees of the 60's and 70's have retired now,and even if the medical treatment isn't as good as it should and could be,the vets are treated MUCH better. The typical VA employee of today seems to care,and seem to do the best they can do for the vets.
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Offline mountaineer

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Re: Share your cancer journey - and any other personal medical experience
« Reply #115 on: April 29, 2020, 06:27:34 pm »
It has to be said that the VA of today is 10,000 times better than the VA of the 70's was. All the anti-VN war employees of the 60's and 70's have retired now,and even if the medical treatment isn't as good as it should and could be,the vets are treated MUCH better.
Yeah, my father's worst experiences with them were in the 70s and 80s. The last hospital he went to, in 1993, was pretty good.
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Online Fishrrman

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Re: Share your cancer journey - and any other personal medical experience
« Reply #116 on: April 29, 2020, 06:32:10 pm »
I realize I'm dumb, but I'd like to ask:

If treatment in the VA health system is bad, why don't veterans just sign up for Medicare at age 65, and forget about the VA?

Is that prohibited by law, or something?

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #117 on: April 29, 2020, 06:46:10 pm »
I realize I'm dumb, but I'd like to ask:

If treatment in the VA health system is bad, why don't veterans just sign up for Medicare at age 65, and forget about the VA?

Is that prohibited by law, or something?

@Fishrrman

No,but the problem is most vets are injured while still in their 20's or 30's,and you have to be able to eat and live until 65 to start drawing SS.

Which is what I have done for the most part since I turned 62. SS pays most of it,and I just paid the rest out of my pocket.

I just can't do this when the treatment bills run up over 200 grand. I just don't have the money.

And,on principle,since the US Government promised to pay all my medical bills if I got permanently injured if I would put on a uniform and risk my life,I shouldn't even HAVE to pay it.

I normally just pay the doctors bills out of my pocket not paid by SS because it reduces the stress on me,but there is no way I can pay off bills like this,and as a disabled veteran rated at being 100 percent service-connected disabled now,I shouldn't HAVE to pay it.

I kept MY promises,it's time for the government to keep theirs.
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Offline jafo2010

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Re: Share your cancer journey - and any other personal medical experience
« Reply #118 on: June 08, 2020, 10:04:44 pm »
Pete, I just read the comments here.  Disgusting is the only word that comes to mind regarding the treatment you have received.  If it helps any, if you give us your name and whatever pertinent info needed, I think it would help if everyone here willing to do so wrote their politicians on the continued injustice to veterans, mentioning your issues specifically.  I thought the law Trump had passed resolved the issues for veterans.  If that is not the case, our writing our politicians, including Trump, might just create enough of a stir to get these stinkers in Washington to do their job.

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #119 on: October 12, 2020, 12:26:37 pm »
Ok,here is a run-down on my experiences with Stage 4 Lymphoma AS  OF THIS DATE.

I guess it begins with me being in VN in the late 60's,and running covert reconnaissance and "direct action" missions into Cambodia and Laos. As all of you of a "certain age" know,the USAF was dropping tons of a chemical known as "Agent Orange" all along the Ho Chi Mihn Trail in North Vietnam,Laos,and Cambodia,to kill off the trees and other vegetation in order to give the USAF and USN fighters and bombers a clear view of the road from North Viet Nam to southern Cambodia,so they could bomb the troop and supply-carrying vehicles traveling along the road,and disrupt the supply train to the NVA troops operating in the south,and using base camps in the "neutral" countries of Cambodia and Laos.

The knew where to drop the chemicals because of covert action team's like the ones I served on were infiltrating into both nations,and physically finding them,marking their locations on maps,and usually,ambushing a convoy or a troop movement to get the NVA forces to attack us in order to get a mass of them in one place so they could bomb the hell out of them.

At that time Agent Orange was determined to be harmless to humans,and  I have seen photos of USAF air crews literally opening barrels of it and loading it in the hoppers to spray it wearing nothing more than normal fatigue pants and t-shirts. Not a hat,mask,or pair of gloves in sight anywhere. Many paid a terrible price for this later.

Anyhow,while out on one recon missions and resting on the ground in our overnight position,I started getting a terrible itch all over my back. One that couldn't be satisfied by scratching. So bad I couldn't sleep at all that night,and neither could the rest of the team due to all the noise I was making from moving around and scratching. The team had to be extracted early due to me not being able to continue with the mission,and jeopardizing them safety.

Got back to the base camp and the camp medics couldn't diagnose the problem,so I was transferred from Recon Company to a Hatchet Force (direct action) platoon while healing. I went on a few patrols with them before it got worse,and was sent me to the 8th ( I believe) Army field hospital in Nha Trang,where they had a Tropical Disease department. They took one look and told me there was a USAF doctor at the USAF Hospital at Camn Rah Bay that specialized in "that sort of thing".

I got there and he took one quick look and told me "I am ordering you to be med-evaced from VN because I have seen this sort of thing before,and it will never get better as long as you remain in a hot and humid climate."

I told him I would go,but not until after I went on the mission I had already been briefed on,that was due to launch in a day or two.

I had already committed to it,been briefed,and the yards in my squad knew what to expect of me,and I knew what to expect of them,and it's dangerous to all to "switch cast members" in situations like that.  He smiled and said he was going to do it anyway,but this didn't worry me. After all,I had once been a member of a "snatch team" that went to the Army field hospital in Pleiku to "snatch" one of their patients away from them they were planning on med-evacing to a Army hospital in Japan due to a head wound. He found out about this,and gave us a call and told us to come after him. So that's what we did,and our camp medics took over his care until he finished healing so he could go out on more missions. Bad decision on his part because he was killed in action not long afterwards.

Anyhow,I wasn't worried because if we could do this for "Sugar Bear",(his code name),we could do it for me,who only had a bad case of acne,right?

Boy was *I* surprised when I got back to the camp the day before mission launch,and discovered my orders sending me back to Bragg had already been published,and I had already been replaced by a new guy who had never heard a shot fired in anger before. All my personal possessions had already been packed up,and my issue weapons turned back into the arms room. I gave the non-issued weapons to friends on other teams,and was flying out to Nha Trang that same afternoon to process out of VN and go back to the US.

WHO ever heard of anybody getting med-evaced from VN for acne??????

Anyhow,I didn't think much about it because I DID start getting better almost immediately,but to my surprise,I had to leave SF because my profile kept me from wearing a parachute harness,so I couldn't make parachute jumps anymore.

This was what caused me to get out of the army. I loved SF almost as much as I hated the rest of the army.

So I got out,and over the years had a few incidents where it came back for a while,and then disappeared. I did notice that after about 2 years of being discharged I developed a "bubble belly",but at first attributed that to having a LOT more time to drink beer and eat junk food,and doing a LOT less exercising.

I WAS curious about why I could hear "water" sloshing around in my stomach when doing something like riding in a car crossing railroad tracks,for instance,but the VA docs had no interest in checking it out,so they told me to "just ignore it,and it will go away".

It didn't,and a couple of years later "Agent Orange" became a big deal,and the US Military and the chemical company (Dow?) finally admitted it was a deadly poison that COULD affect humans.

Guess what some of the symptoms were.

Fast forward a couple of decades of total neglect by the VA doctors,other than telling me I was scamming the government for disability pay,and I am suddenly diagnosed with Stage 4 Lymphoma.

Guess which cancer is directly related to Agent Orange exposure.

So I get the maximum amount of chemo blasts allowed in the minimum amount of time,and my memory is still in recovery mode. Or at least I hope it is. I also got radiation treatment at first.

When it was done,my doc says I am maxed out on chemo,but good for the time being,and that mine was incurable,and WHEN it comes back "We have a little pill we can give you to take each day to help you deal with it. Meanwhile,I will schedule PET exams for you every couple of months so we can keep track of what is going on with your system.  I would get a PET test and see the doc the following week to get a reading on how I was doing.

Imagine my surprise when I go back in to get the reading for my most recent PET exam a couple of weeks ago,and the doc gets a surprised look on her face,and tells me "You are now cancer-free. The PET scan couldn't find a trace of cancer anywhere in your system."

I wrote this long post and went into details  in order to "set the stage" so you would understand how hopeless my situation seemed to be right up to a few short weeks ago.

   SO,"take heart fair friends,it ain't over until it's over!" If someone with MY background who is in their
70's and never once even pretended to eat healty,never met a drug they didn't like,drank whiskey to the point I lost track of what year it was and where I was living at one point, and smoked up to 3 packs of cigarettes a day for 30 years or more can make a full recovery,ANYBODY can make a full recovery!


The important thing to remember is to just keep dancing until the music stops. NEVER give up,NEVER!



« Last Edit: October 12, 2020, 12:35:15 pm by sneakypete »
Anyone who isn't paranoid in 2021 just isn't thinking clearly!

Offline Smokin Joe

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Re: Share your cancer journey - and any other personal medical experience
« Reply #120 on: October 12, 2020, 03:34:24 pm »
@sneakypete Thanks for posting that. I have a granddaughter who has fought off lymphoma a couple of times. The claim was that it was from exposure to anhydrous ammonia from a train derailment in Minot, ND, but I think there may have been a carload of Roundup on the train as well that may have leaked (Its a common herbicide up this way, used in mass quantities, and why I have always stayed away from spraying operations). But that's not the official story, so my suspicion is just that.

I worked construction with a guy in the early '70s who used 2,4,D on a golf green, but told me to get the hell away from it (I was 16, then), and I am glad he did. 'Murphy' had been in Vietnam, and said it was "bad sh*t", so I believed him. Turns out he was right. I haven't been a fan of herbicides or even bug spray since, and I think that has generally kept me healthier, despite some of the stuff I did in my 'bad old days', which I will not elaborate on.

I'm glad to hear you are on the mend. Maybe we can keep your cantankerous self around here for a while longer  :laugh:
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Offline berdie

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Re: Share your cancer journey - and any other personal medical experience
« Reply #121 on: October 12, 2020, 03:35:52 pm »
Like I've already said...you are tough. Imho this is great news and I celebrate it.

And if I haven't said so before...thank you for your service.

Offline mountaineer

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Re: Share your cancer journey - and any other personal medical experience
« Reply #122 on: October 12, 2020, 03:40:56 pm »
Love your story, @sneakypete  and am thrilled about the doctor's latest report.
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Re: Share your cancer journey - and any other personal medical experience
« Reply #123 on: October 13, 2020, 05:52:05 am »
@sneakypete you and yours, are in my thoughts all the time.

I am happy about your latest news. Hang in there, Sir, you got a lot of stuff to tell us about on here!

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Offline sneakypete

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Re: Cancer and care update
« Reply #124 on: January 18, 2021, 07:18:18 am »
@mystery-ak  @Right_in_Virginia  @EdJames  @Victoria33  @Freya  @Bigun  @SZonian  @Cyber Liberty  @roamer_1  @Sanguine @truth_seeker @RoosGirl @DCPatriot  @To-Whose-Benefit?  @BassWrangler  @Lando Lincoln  @mountaineer  @Elderberry  @GT Hawk  @berdie @Sighlass  @Applewood 

http://www.gopbriefingroom.com/index.php/topic,344993.0.html

I apologize if I missed anyone on the ping list above. In a lot of pain,haven't been sleeping,and am more than a little pissed off. These may not be good excuses,but they ARE the only ones I have.

Ok,I think everyone interested knows by now that all my PET scans for the last 9+ months have shown me to be cancer-free,despite an original diagnosis of incurable Stage 4 Lymphoma. Even my cancer doc seemed a little shocked when she first read the PET scan results to me. Had a BIG smile on her face,too! She is in what is in MY opinion one of the worse career fields possible when it comes to delivering good news. She,and the others on her career path deliver very bad news to someone on a daily basis,and this HAS to be a drag on your life. Especially when it comes to dying children. I do not mind admitting *I* am NOT tough enough to deal with that,and greatly admire the determination and inner-strength of character these MD's have.

Ok,enough of that. I have updates,and they are not good. My updates are more related to the medical situation created by this fake virus crap that has hospital rooms reduced by at least a third,and fewer hospital rooms means the bean counters who run the hospitals are VERY picky about who they will admit as patients.

IF you have a "generous" (from the Hospital Administrators POV) you are "golden". If the VA is your only insurance plan,you are screwed because they refuse to pay for a lot of the care you might need,and pay less than everyone else for the ones they do pay. Even then it takes them months to cough up the money. The end result of this is if you are a 100 percent service-connected disabled vet,you basically need to find a practicing Witch Doctor because no one else will sell you insurance anyone but a multi-millionaire can afford,and the VA Medical System seems to have a VERY focused care plan. For example,if you need a prosthetic leg or arm,you are definitely going to the right place when you go to a VA hospital to get one made. Thanks to the decades of guerilla war in the Muddle East with no actual attempt to win the damn thing,there is nobody on the planet that has more experience and knowledge on how to do this and what needs to be done.

If your problem is you need false teeth,a cast for a broken arm,meds for diseases like diabetes,etc,etc,etc,you are probably ok.

Mention the word "Agent Orange" and everybody shrieks on horror and runs for the hills. Seems like many in the VA system,starting with some of the doctors and definitely running rampant through the  management/beancounter level,STILL believe vets are trying to rip off the government for undeserved compensation. Part of this is due to the fact that most of the medical care professionals working for the VA are working there because they are not very good doctors and can't buy the insurance they need to work at a private practice (you can NOT sue the VA for malpractice),or recent med school graduates working to pay off school loans provided by the government.

Ok,enough background,although I will do my best to answer any questions that might be asked.

My current problem started maybe a year ago. Not sure how long ago it began due to both chemo brain and the chills and fevers I have been having for an undetermined amount of time. I am only able to focus well enough right now to write this because of the pain from my left leg,which is due to a botched operation at the local VA hospital to remove an "unspecified growth" in the 1970's. Had a "bump" about the size of a golf ball grown right up on the inside of my knee,right beside the knee,so not having any insurance or any money,I went to the VA to get it removed.

Being a VN vet,anytime and every time they cut something from me they can't or don't want to identify,they call it an "unspecified growth" and tell me if it turns out to be anything serious,they will notify me. So far they have never notified me of any results,good or bad.

In THIS specific case the biggest problem came from the incompetent VA surgeon forgetting to reattach the major blood vein that was supplying "the growth" with blood when they cut it out.

This killed the circulation in my left leg and caused it to swell so big I could only wear shorts,and it got infected and turned black and purple after a few months of them giving me more and more fluid pills to try to bring down the swelling. I finally told them no more damn fluid pills because I was so freaking dehydrated that my lips were sticking together,so they offered to amputate it and give me a prosthetic leg.

That was when I told them to go bleep themselves because I was going to see REAL doctors and get a second,and maybe even a third opinion.

So I went to see a local vascular surgeon,and he told me "No problem. I can restore most of the blood flow to your leg by putting a synthetic vein in your leg above the bad part,and then running it down your leg to attach it to what remains of the good part down low. It won't be a perfect solution,but it will save your leg."

He then told me the "but",which was,"I can't do this right away,though. First we have to kill the infection before I can operate."

Believe it or not,he killed the infection using neoprene pads that were impregnated with the metal silver. Silver kills bacteria like nobody's business! Once a week he would take off the bandages on my leg to remove the neoprene pad,and it would be absolutely coated with a black substance that looked like tar. What it was,was dead bacteria.

Soooo,this pretty much solved the leg problem for a couple of decades. Yes,my left leg remained swollen,but nowhere near as bad as it was,and I had good circulation and feeling in it.

End of Part 1 Part 2 follows

 







Anyone who isn't paranoid in 2021 just isn't thinking clearly!

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #125 on: January 18, 2021, 08:03:01 am »
@mystery-ak  @Right_in_Virginia  @EdJames  @Victoria33  @Freya  @Bigun  @SZonian  @Cyber Liberty  @roamer_1  @Sanguine @truth_seeker @RoosGirl @DCPatriot  @To-Whose-Benefit?  @BassWrangler  @Lando Lincoln  @mountaineer  @Elderberry  @GT Hawk  @berdie @Sighlass  @Applewood

http://www.gopbriefingroom.com/index.php/topic,344993.0.html

 

 
Part 2

So now that we have the history taken care of,we get to present time,that SEEMS to have began with my cancer diagnosis.

For months now my left leg has been so swollen with pus that I can only wear big overalls or shorts. My left is too big to fit into regular pants. It is not black and purple like it was the last time it was seriously infected,but it does hurt like a bastard. It is not unusual for me to go two days in a row with no sleep or only a couple of hours,thanks to the pain.

So I decide to go to a different VA hospital that is about 250 miles away because I have  heard so many good things about it,and sure enough,it is so different the staff there might as well be aliens from another solar system. Maybe THE nicest bunch of people I have ever dealt with,as well as the most helpful. No,I did NOT get to see a vascular surgeon that day. The system just isn't set up that way,but I did get an appointment to see one  a few weeks later,and it was a real revelation when I did.

Within 10 minutes of my scheduled appointment the surgeon himself walked out into the waiting room,introduced himself,shook my hand,and led me back to his office to have me explain my problems,answer his questions,and have him do an ultrasound test on my left leg.

When he finishes,he tells me "The bad news is that the VA is not equipped to deal with your problem,but I have a few ideas and need to talk with the chief of surgery to see what we can do. Please sit tight. I should be back in a few minutes."

When he came back he has the Chief of Surgery with him,and she smiled at me,shook my hand,and told me they had decided that I needed to be sent to a private clinic that WAS equipped and qualified to deal with my problems,and to not worry about the expenses because they would have the VA pay all the expenses under their "fee basis program".

Not only that,but the private clinic was only 130 miles from home,and they also told me they would pay my travel expenses and motel expenses.

Sooo,they sent me home to wait.

Then the whole Covid-19 thing blew up,which means that both the VA hospital AND the private clinic lost at least 1/3rd of their available patient rooms.  Not to mention their  staff.

Which means that the bean counters that run the private clinics start to pick and choose patients based on their health insurance plans.

Which means a few months later I got a  letter from the director of the private clinic telling me I do NOT have "a vascular problem,but a wound care problem,and they do not do wound treatment,so were referring  me back to the VA for treatment."

The SAME VA whose Chief of Vascular Surgery had told me they were not equipped to treat me,and referred me to that private clinic because they could,and because the clinic had a contract with the VA to treat VA patients the VAMC couldn't help.

A short time later I get a letter in from that same VA hospital telling me I have an appointment at their wound treatment clinic in 30 days or so,and that if I miss that treatment it can result in the loss of my "privilege" to be treated at the VA hospital.

These cretins expect me to drive over 500 miles round trip and rent a motel room overnight,JUST TO GET A FREAKING BANDAGE CHANGED,and are threatening to remove my VA Hospital privileges if I miss the appointment.

Keep in mind that I am changing these bandages 2 to 3 times a day myself,right here in my house.


Sooo,I called my new Congresscritter about this,and learned that "Due to Covid-19 our office is closed,so please call XXX-XXXX."

I call that number and get his office assistant who is now running his office from her home. I told her about this and even sent her an email,but to be  honest I was so out of it at that time due to fever and Oxy that I have no idea what I said or what she said to me.

Been meaning to call her back,but due to fever and being bombed with pain pills,I kept forgetting.

Now the pain is worse than ever,my fever is returning,and the local doc is refusing to refill my Oxy prescription because he is "afraid you will become addicted".

On top of that the vascular surgeon at the good VA hospital is not returning my phone calls or emails. For all I know,he may have been put on leave as the VA cut operating staff due to Covid-19.

Frankly,I am running out of options as well as patience. In NORMAL times,I honestly don't think this would be much of a problem,but thanks to Covid-19 the whole damn world seems to be in a full-fledged panic,and it is impossible to maintain communications.


I can NOT be the only one having these communication/appointment problems.

Any suggestions that doesn't involve rifles?

« Last Edit: January 18, 2021, 08:28:40 am by sneakypete »
Anyone who isn't paranoid in 2021 just isn't thinking clearly!

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #126 on: January 18, 2021, 08:22:19 am »
I realize I'm dumb, but I'd like to ask:

If treatment in the VA health system is bad, why don't veterans just sign up for Medicare at age 65, and forget about the VA?

Is that prohibited by law, or something?

@Fishrrman

No,in fact,enrollment in Medicare is automatic on your 65th birthday.

The problem is Medicare does not pay ALL the bills,leaving you holding the bag for other bills you can't afford to pay.

And to be honest,in this day of "Big Corporate Hospital,Inc",even local hospitals are picking and choosing their cases. My "local" hospital (only about 25 miles away) used to be pretty good,and some of the local doctors were DAMN good!

Then "Big Corporate Hospital,Inc" moved in and bought the local hospital,as well as all the private practices of the local docs.

Remember my story of the local vascular surgeon who originally saved my leg? He is still there,but I can no longer see him because I have to schedule the appointments through his new masters at "Big Corporate Hospitals,Inc",and they channel me through their "wound treatment care program" every time I try,which has been 3 times now. When I go there,hoping to get  a referral to the vascular surgeon,the only thing that happens is some rube changes the bandages on my leg,and they don't even do a good job of that. The last one seemed better suiting to fixing flats at a tire store than working in the medical field.

3 visits now,3 times I have tried to get a referral to the vascular surgeon,and the last time had a really snotty nurse actually laugh at me when I asked.

IF I could see that doc,he could and would help me,but I can never get to see him.

My OPINION is that I never get to see him because it is more profitable to schedule other people,and there are only so many hours in a day that people can be billed.

If this isn't happening where you live yet,keep an eye out and start public protests when it does.

Do NOT listen to the local docs who tell you they will never sell out to the Borg. They will. I now have 3 good docs I used to see locally who made the same claim,but eventually they caved and sold out.

Billionaire corporations who are only interested in total domination and profits are almost impossible for a MD to fight. The only private doc I have left is my heart surgeon,who is in his late 70's,has a huge patient base,and can't be bought out because he loves his job and already has more money than his grandchildren can spend.
« Last Edit: January 18, 2021, 08:30:02 am by sneakypete »
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Offline Bigun

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Re: Share your cancer journey - and any other personal medical experience
« Reply #127 on: January 18, 2021, 09:43:44 am »
@sneakypete I'm sorry to hear about you having to go through all that and wish I had some helpful suggestion for you but I don't.  It thoroughly pisses me off that a guy like you, who gave so much, gets treated like that but it seems that I'm unable to do anything about that either.  The gooberment only needs us when they have some dirty work to do somewhere and once we are used up and/or they no longer need us you are on your own.
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Offline mountaineer

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Re: Share your cancer journey - and any other personal medical experience
« Reply #128 on: January 18, 2021, 10:01:18 am »
I'm with Bigun, @sneakypete - angry on your behalf, but feeling powerless.  :crying:
“All Democrats are not horse thieves, but all horse thieves are Democrats.”—Horace Greeley, 1872

Offline skeeter

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Re: Share your cancer journey - and any other personal medical experience
« Reply #129 on: January 18, 2021, 10:05:08 am »
I'm with Bigun, @sneakypete - angry on your behalf, but feeling powerless.  :crying:
'Powerless' is a perfect adjective to describe alot of things lately.

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #130 on: January 18, 2021, 10:32:24 am »
'Powerless' is a perfect adjective to describe a lot of things lately.

@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.

If you can just manage to back one into a corner and get your hands around his throat,you can get him to listen to reason. Otherwise you are on your own unless what you happen to want is also something he or she happens to want. They will then promote it as a unselfish act to help their constituents.
« Last Edit: January 18, 2021, 10:34:16 am by sneakypete »
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Offline skeeter

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Re: Share your cancer journey - and any other personal medical experience
« Reply #131 on: January 18, 2021, 10:33:48 am »
@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.
Thats when you can get them to admit there's a problem.

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #132 on: January 18, 2021, 10:35:17 am »
Thats when you can get them to admit there's a problem.

@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.
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Offline skeeter

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Re: Share your cancer journey - and any other personal medical experience
« Reply #133 on: January 18, 2021, 10:38:03 am »
@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.

Of course. Government now exists solely for its own sake. We're just its host.

Offline roamer_1

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Re: Share your cancer journey - and any other personal medical experience
« Reply #134 on: January 18, 2021, 11:56:42 am »
@sneakypete

I had much the same frustrations... And why I walked off. The money ain't in the healing, the profit is in the maintenance. They'll keep you coming back till you play out. You do well to see it for what it is.

So I went off the reservation and went my own way. Had I not, I would likely be dead. Them sombiches had me on buckets of pills that did nothing, and fought with me over pain relief. For years. YEARS.

I had a God moment FWIW, though I know your position on that, so  won't bore you with the miracle... But I will tell you this: Seven YEARS I spent in that damnable wheelchair, in screaming-yellow-bobsled-run-from-hell pain. I held my mud and water all damn day so I would only HAVE to get up once to do my business and maybe bath if I could stand long enough. I slept in 10 minute naps, all the time... nodding off to sweet relief, only to jolt back awake from the pain... for seven_very_long_years.

Then I went alt-med, and the miracle aside, it was a Cheyenne medicine man that brought me healing. A month after I went away from the vultures at the hospitals, I was walking, and relatively free of pain. And what worked was native medicine and hillbilly remedy (which are largely the same thing), with a good bit of health through diet and naturopathy.

If you need to be sawed on, unless you know a good vet that will work with you, you are stuck with the western docs. And probably rightly.

But an at-med doc would have perked up finding out that silver was kicking ass... Don't do it without a healer, preferably a western doc w/ an alt-med side-hustle, but I know damn well that hearing that, my doc would have put me on a colloidal silver regimen... That is taken IN not on. Best be careful with that, because you sound so infested that the die-off has to be a controlled thing, or all the dead bugs in you will cause you to go septic, and might just kill you.

And there are natural meds that help a lot reducing swelling and increasing circulation. Hell, a  good sweat will do wonders. It can't hurt to seek alt-med. Considering your ancestry I imagine you can get something  going with the natives. And you are back in the sticks, so I imagine you can get at the hillbillies... Careful going on though. find a healer by word of mouth. There are just as many shysters on that side of the fence as where you are now.

Scares me though - not in that they can't fix a lot, but it sounds like some of this is going to be fixing what western docs did wrong and artificially... which shit is likely beyond any help without digging around, hence back to the surgeons.

The only other option I see is to go full bore western med. Buy into Humana or some other insurance plan that will cover the contingencies that medicare won't cover and knock the balls to the wood in conventional med away from the VA. Rack up a bill if you have to - you can always take a medical bankruptcy after the fact, or a full bankruptcy if it is needed. And it would serve em right after all you've been through. They've sucked enough of you up by now.

If it goes there... they can't take pensions. They can't take your house, nor can they take your last means of transportation. Any bank accounts otherwise can be attached, and anything titled otherwise can be taken, so conduct yourself accordingly well before the fact.

And finally - if the lymphoma was a misdiagnosis, why the hell are you still enduring chemo?

Offline Applewood

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Re: Share your cancer journey - and any other personal medical experience
« Reply #135 on: January 18, 2021, 01:23:56 pm »
@sneakypete

Sorry to read about all your troubles, man.  You are correct that Medicare alone won't cover everything; you would need a supplemental policy.  But good luck trying to get one with your health issues (pre-existing conditions). 

I'm angry that the VA does not take care of our veterans.  Politicians of both parties promise improvements, but it gets worse instead of better  Despite all the lip service, no one in DC really cares about our vets.

Don't know where you live, but...is there a hospital near you that is university-affiliated?  I'm lucky where I live to have available a number of choices, including several university owned hospitals.  In  complicated cases like yours, they have the expertise and experience.  They know all the latest research and may have done research themselves. 

Of course, the hard part is getting an appointment to see anyone.  With COVID, hospitals and doctors have their hands full.  They have pushed anyone with other health issues to the back of the line as far as health care is concerned.  You will find that to be true, no matter where you go.

I know what you mean about corporate hospitals, but these days independent hospitals are disappearing simply because they don't have the resources to survive.  But for some hospitals, going corporate has actually improved them.  I have one formerly independent hospital about a mile or two from my house.  For years that place was a cesspool.  I would travel long distances to much better university-related hospitals rather than take my chances with the hospital closest to home.  But since that hospital is now part of a corporate health system, it has very much improved. 

Anyway, I do wish you well and hope you can get in to see doctors and staff who know what the H they are doing.   


Offline DB

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Re: Share your cancer journey - and any other personal medical experience
« Reply #136 on: January 18, 2021, 03:27:01 pm »
@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.

If you can just manage to back one into a corner and get your hands around his throat,you can get him to listen to reason. Otherwise you are on your own unless what you happen to want is also something he or she happens to want. They will then promote it as a unselfish act to help their constituents.

I think politicians love bureaucracies because no one can be held accountable while at the same time allowing the expansion of power to themselves. Bureaucracies are essentially a big circle jerk that allows everyone involved to point the finger elsewhere while getting paid well.

Offline berdie

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Re: Share your cancer journey - and any other personal medical experience
« Reply #137 on: January 18, 2021, 04:53:37 pm »
@sneakypete This is all kinds of wrong. I am mad for you.

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #138 on: January 18, 2021, 06:14:48 pm »
@sneakypete

Sorry to read about all your troubles, man.  You are correct that Medicare alone won't cover everything; you would need a supplemental policy.  But good luck trying to get one with your health issues (pre-existing conditions). 

I'm angry that the VA does not take care of our veterans.  Politicians of both parties promise improvements, but it gets worse instead of better  Despite all the lip service, no one in DC really cares about our vets.

Don't know where you live, but...is there a hospital near you that is university-affiliated?  I'm lucky where I live to have available a number of choices, including several university owned hospitals.  In  complicated cases like yours, they have the expertise and experience.  They know all the latest research and may have done research themselves. 

Of course, the hard part is getting an appointment to see anyone.  With COVID, hospitals and doctors have their hands full.  They have pushed anyone with other health issues to the back of the line as far as health care is concerned.  You will find that to be true, no matter where you go.

I know what you mean about corporate hospitals, but these days independent hospitals are disappearing simply because they don't have the resources to survive.  But for some hospitals, going corporate has actually improved them.  I have one formerly independent hospital about a mile or two from my house.  For years that place was a cesspool.  I would travel long distances to much better university-related hospitals rather than take my chances with the hospital closest to home.  But since that hospital is now part of a corporate health system, it has very much improved. 

Anyway, I do wish you well and hope you can get in to see doctors and staff who know what the H they are doing.

@Applewood

The closest VA hospital to me is in Hampton,VA,and even that is  several hours away.  I have been told it is rated as the 4th worse VA hospital in the nation,and believe it. Mostly populated by blacks and former sailors,if you are former US Army or USAF,you have a hard time even getting a clerk to talk to you. If you are white,you can also sense a "certain attitude". This MAY have changed some since the last time I was there,though. Most of the shitheads that gave me so much trouble in the past are retired now.

If you can't beat the bastards,outlive them!

After reaching across the desk and dragging the VA puke operating it closer to me so he could hear me better twice,I no longer go there.

I will admit that the last time I went there was maybe 2 years ago,it was a thousand times better than it used to be.

Which ain't saying much.
« Last Edit: January 18, 2021, 06:18:30 pm by sneakypete »
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Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #139 on: January 18, 2021, 06:29:58 pm »
@sneakypete

I had much the same frustrations... And why I walked off. The money ain't in the healing, the profit is in the maintenance. They'll keep you coming back till you play out. You do well to see it for what it is.

So I went off the reservation and went my own way. Had I not, I would likely be dead. Them sombiches had me on buckets of pills that did nothing, and fought with me over pain relief. For years. YEARS.

I had a God moment FWIW, though I know your position on that, so  won't bore you with the miracle... 

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Offline libertybele

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Re: Share your cancer journey - and any other personal medical advice
« Reply #140 on: January 18, 2021, 07:10:43 pm »
@sneakypete I am so sorry to hear what you are going through.  My immediate thought is why isn't the VA sending a home health nurse to your home to help with treatment and bandaging; the least that they could be doing.

I'm angered at the treatment or lack of treatment, compassion and consideration that you are getting from the VA. That is unacceptable. 

It was my understanding that with new laws in place that the VA had to treat and pay for a facility for you to go to that was closer and it does NOT have to be a VA facility.  My father-in-law who was a WWII vet went to local doctors/specialists because the VA specialist that they wanted him to go to was over 100 miles away.  After my husband began making demands they finally paid for a local specialist that he saw and they coordinated also with Hospice care, but he had to see the local VA doc once a month to ensure that the VA would still pay for his treatment.

I wish I had some answers. I will continue to pray for you and may God heal you and give you relief from pain so that you can live in comfort and get some rest!

God Bless You @sneakypete
« Last Edit: January 18, 2021, 07:29:45 pm by libertybele »

Offline libertybele

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Re: Share your cancer journey - and any other personal medical advice
« Reply #141 on: January 18, 2021, 07:38:55 pm »
@sneakypete   I am hoping that somehow this may help you and maybe you've already been down this route ...  Trump signed a law called the VA Mission Act last June....here is an excerpt ...

WASHINGTON – Veterans will have expanded access to medical care outside Department of Veterans Affairs facilities beginning Thursday under a law signed by President Donald Trump last year and touted as a major achievement by Trump on the campaign trail.

Rules established under the law and published Wednesday in the Federal Register say the VA will pay for veterans to see non-VA doctors if they have to wait longer than 20 days or drive more than 30 minutes for primary or mental healthcare at a VA facility.

For specialty care, they can see private doctors at VA expense if they have to wait longer than 28 days or drive more than an hour to see a VA provider.

Previously, veterans who had to drive more than 40 miles or wait longer than 30 days could choose to see a private doctor paid for by the VA.

VA officials previously estimated the new rules could increase the number of veterans eligible for VA-sponsored private care to as many as 2.1 million – up from about 560,000.

The rules going into effect Thursday also allow veterans to go to non-VA urgent care clinics at VA expense without prior approval, though they may have to pay a co-payment.

Trump signed the law last June, known as the VA MISSION Act, but its key provisions didn’t take effect until now.

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical advice
« Reply #142 on: January 18, 2021, 08:06:06 pm »
@sneakypete 


Quote
It was my understanding that with new laws in place that the VA had to treat and pay for a facility for you to go to that was closer and it does NOT have to be a VA facility.
 


That is true and that IS what the VA did,but what are you going to do when that civilian facility refuses to treat you by making a bogus claim you are seeking wound treatment instead of cancer treatment. This is PRECISELY what the civilian clinic the VA referred me to claimed.

It is MY theory the reason they are doing this is two-fold. First of all,the VA doesn't pay as much as private insurance companies.

Secondly,with this bogus Covid-19 crap ALL those clinics have lost 1/3 of their rooms,which means they have lost 1/3 of their income. Put the two together,and it seems obvious to ME they are using bogus data to turn my down so they can use that room for a civilian with an insurance company that pays the full amount charged.

And since they are a civilian organization,there isn't a damn thing I or the VA can do about it.

I GUESS the VA could threaten to cancel all future contracts with them on grounds of breach of contract,but I am also guessing the VA Wusses are afraid that will backfire on them and the private companies would then refuse ALL VA patients. This would NOT hurt the VA,but it would hurt the patients they seek outside care for.

Just a guess,but it is the only thing that makes sense to me.

What we NEED is for a few congresscritters to get together and threaten to fine all those private companies for breach of contract and fraud,but it would take stones to do that because the private health care companies are no doubt lining the pockets of the legislators to prevent that from happening,so it ain't likely to happen.

 
BTW,went to see a local doc today,and she gave me some painkillers and anti-biotics that really turned me around. I was having chills and fevers,and wanting to vomit when I went to see her,but within a hour of getting the scripts filled and taking them,everything is damn near peachy-keen now.

I used to live with her mother and have known her since she was born. Those are the kind of connections we all need. Didn't even have an appointment. I just walked in and told my ex I needed some new meds,and how bad I was feeling,and she went right into her daughter's office and arranged it all.

The only thing scary is  she looks exactly like her mother did at that age,and there has been nothing in my life that has scared me as much as her mother.
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Offline sneakypete

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Re: Share your cancer journey - and any other personal medical advice
« Reply #143 on: January 18, 2021, 08:09:43 pm »
@sneakypete   I am hoping that somehow this may help you and maybe you've already been down this route ...  Trump signed a law called the VA Mission Act last June....here is an excerpt ...

WASHINGTON – Veterans will have expanded access to medical care outside Department of Veterans Affairs facilities beginning Thursday under a law signed by President Donald Trump last year and touted as a major achievement by Trump on the campaign trail.

Rules established under the law and published Wednesday in the Federal Register say the VA will pay for veterans to see non-VA doctors if they have to wait longer than 20 days or drive more than 30 minutes for primary or mental healthcare at a VA facility.

For specialty care, they can see private doctors at VA expense if they have to wait longer than 28 days or drive more than an hour to see a VA provider.

Previously, veterans who had to drive more than 40 miles or wait longer than 30 days could choose to see a private doctor paid for by the VA.

VA officials previously estimated the new rules could increase the number of veterans eligible for VA-sponsored private care to as many as 2.1 million – up from about 560,000.

The rules going into effect Thursday also allow veterans to go to non-VA urgent care clinics at VA expense without prior approval, though they may have to pay a co-payment.

Trump signed the law last June, known as the VA MISSION Act, but its key provisions didn’t take effect until now.


@libertybele

THANK YOU ,THANK YOU ,THANK YOU!

You just made my year!. The closest hospital if more than 30 minutes from where I live. I will be copying and pasting your post to my desktop!
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Offline libertybele

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Re: Share your cancer journey - and any other personal medical advice
« Reply #144 on: January 18, 2021, 08:11:42 pm »
 


That is true and that IS what the VA did,but what are you going to do when that civilian facility refuses to treat you by making a bogus claim you are seeking wound treatment instead of cancer treatment. This is PRECISELY what the civilian clinic the VA referred me to claimed.

It is MY theory the reason they are doing this is two-fold. First of all,the VA doesn't pay as much as private insurance companies.

Secondly,with this bogus Covid-19 crap ALL those clinics have lost 1/3 of their rooms,which means they have lost 1/3 of their income. Put the two together,and it seems obvious to ME they are using bogus data to turn my down so they can use that room for a civilian with an insurance company that pays the full amount charged.

And since they are a civilian organization,there isn't a damn thing I or the VA can do about it.

I GUESS the VA could threaten to cancel all future contracts with them on grounds of breach of contract,but I am also guessing the VA Wusses are afraid that will backfire on them and the private companies would then refuse ALL VA patients. This would NOT hurt the VA,but it would hurt the patients they seek outside care for.

Just a guess,but it is the only thing that makes sense to me.

What we NEED is for a few congresscritters to get together and threaten to fine all those private companies for breach of contract and fraud,but it would take stones to do that because the private health care companies are no doubt lining the pockets of the legislators to prevent that from happening,so it ain't likely to happen.

 
BTW,went to see a local doc today,and she gave me some painkillers and anti-biotics that really turned me around. I was having chills and fevers,and wanting to vomit when I went to see her,but within a hour of getting the scripts filled and taking them,everything is damn near peachy-keen now.

I used to live with her mother and have known her since she was born. Those are the kind of connections we all need. Didn't even have an appointment. I just walked in and told my ex I needed some new meds,and how bad I was feeling,and she went right into her daughter's office and arranged it all.

The only thing scary is  she looks exactly like her mother did at that age,and there has been nothing in my life that has scared me as much as her mother.

Good .... I am so glad to hear it.  Hopefully you'll be able to continue to get the care that you need (for what it's worth I've prayed for you in the past -- maybe some prayers have been answered? I know how you feel about that but ....) anyways I'm really glad for you.

As for looking like her mother .... the mind does wonderful things ... try imaging her as something or someone else.   happy77

Offline sneakypete

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Re: Share your cancer journey - and any other personal medical advice
« Reply #145 on: January 18, 2021, 09:06:53 pm »

As for looking like her mother .... the mind does wonderful things ... try imaging her as something or someone else.   happy77

@libertybele

Jabba the Hut would be great,but that is waaaay too big a stretch. Her mother was,and still is a very beautiful woman when she wants to get all dolled up,and the daughter is following in her footsteps by looking to be about half her actual age.
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Offline Smokin Joe

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Re: Share your cancer journey - and any other personal medical experience
« Reply #146 on: January 18, 2021, 11:05:29 pm »
@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.
Do any of those sumbeeches want to be seen as crapping on a veteran? I know out this way that would not play well at all.
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Offline sneakypete

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Re: Share your cancer journey - and any other personal medical experience
« Reply #147 on: January 19, 2021, 01:01:03 am »
Do any of those sumbeeches want to be seen as crapping on a veteran?

@Smokin Joe

You  MEANT to type the words "right-wing reactionary",right?
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Offline Sled Dog

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Re: Share your cancer journey - and any other personal medical advice
« Reply #148 on: February 25, 2021, 06:45:45 pm »
Well, okay, sharing is caring and all that.

I started getting fevers and turning yellow.   And itchy.  The jaundice caused by backed up bilirubin always itches like crazy.

Turned out to be some lump on my bile duct.   Had to go to a specialist before getting the ultrasound.  I decided to not take any Tylenol to drop the fever, so he sent me to the ER with a fever of 104.   That speeded things up quite a bit.

Biopsy was iffy, they weren't sure what it was.   They put a stent in the bile duct to drain the liver, because that was causing the infections and fevers.

I was getting better for a week or so, then getting worse.   Turns out the stent was too short.   Time to pop a new one in.

Then I got better and the surgery was scheduled.   

Oh, wait.  Gotta delay the cancer surgery, the surgeon's wife had a baby girl!  Hooray!

Then they cut me open.   Biliary cancer has something like a 60% two-year mortality rate.  Cool.

Turns out, after the scar from sternum to belly button, that I didn't have biliary cancer, I had ampulary cancer.  The ampulus is the teeny-tiny donut of a muscle that controls flow through the bile duct.   Totally encapsulated by the bile duct, no wandering cancer cells escaping to infect the rest of me. 

No cancer cells in the lymph nodes, the oncologists were bored with me and wanted nothing to do with me.   No chemo for me.

Then the fun started.    The procedure to treat biliary and ampulary cancer is the same, the Whipple procedure, where they surgeon plays "lets rearrange the plumbing" with my intestines.   

So I couldn't eat real food.   They at first forgot and sent me home, then called me back and gave me a permanent IV line in my arm.   And then prescribed this TPN food or whatever its' called, shot straight into my arm.

Full of carbohydrates and stuff.   Prescription mix, of course.

I'm a diabetic.  They forgot to prescribe the insulin to go in the mix.

I was feeling crappy and wasn't checking my blood sugar levels.   My 1528 didn't even break the hospital record.

So i spent another three weeks in the ICU/Rehab units.  Rehab was cool.  The guy on the bed across the room was a 95 year old marine who had been discharged in 1944 because a Jap had stitched some holes in his chest with a machine gun.  And the other guy was a 95 year old Air Corps man who had been made partially deaf by the noise of the machine gun in his B-17 ball turret.   

I lost 95 pounds thanks to that, and because the surgery was effectively a stomach bypass, I've regained just a bit of that and my weight is where the charts say it should have been.

What fun that was.   That was more than five years ago so my surgeon says I am officially "cured".
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Re: Share your cancer journey - and any other personal medical advice
« Reply #149 on: February 25, 2021, 06:50:28 pm »
Well, okay, sharing is caring and all that.

I started getting fevers and turning yellow.   And itchy.  The jaundice caused by backed up bilirubin always itches like crazy.

Turned out to be some lump on my bile duct.   Had to go to a specialist before getting the ultrasound.  I decided to not take any Tylenol to drop the fever, so he sent me to the ER with a fever of 104.   That speeded things up quite a bit.

Biopsy was iffy, they weren't sure what it was.   They put a stent in the bile duct to drain the liver, because that was causing the infections and fevers.

I was getting better for a week or so, then getting worse.   Turns out the stent was too short.   Time to pop a new one in.

Then I got better and the surgery was scheduled.   

Oh, wait.  Gotta delay the cancer surgery, the surgeon's wife had a baby girl!  Hooray!

Then they cut me open.   Biliary cancer has something like a 60% two-year mortality rate.  Cool.

Turns out, after the scar from sternum to belly button, that I didn't have biliary cancer, I had ampulary cancer.  The ampulus is the teeny-tiny donut of a muscle that controls flow through the bile duct.   Totally encapsulated by the bile duct, no wandering cancer cells escaping to infect the rest of me. 

No cancer cells in the lymph nodes, the oncologists were bored with me and wanted nothing to do with me.   No chemo for me.

Then the fun started.    The procedure to treat biliary and ampulary cancer is the same, the Whipple procedure, where they surgeon plays "lets rearrange the plumbing" with my intestines.   

So I couldn't eat real food.   They at first forgot and sent me home, then called me back and gave me a permanent IV line in my arm.   And then prescribed this TPN food or whatever its' called, shot straight into my arm.

Full of carbohydrates and stuff.   Prescription mix, of course.

I'm a diabetic.  They forgot to prescribe the insulin to go in the mix.

I was feeling crappy and wasn't checking my blood sugar levels.   My 1528 didn't even break the hospital record.

So i spent another three weeks in the ICU/Rehab units.  Rehab was cool.  The guy on the bed across the room was a 95 year old marine who had been discharged in 1944 because a Jap had stitched some holes in his chest with a machine gun.  And the other guy was a 95 year old Air Corps man who had been made partially deaf by the noise of the machine gun in his B-17 ball turret.   

I lost 95 pounds thanks to that, and because the surgery was effectively a stomach bypass, I've regained just a bit of that and my weight is where the charts say it should have been.

What fun that was.   That was more than five years ago so my surgeon says I am officially "cured".

I am glad you beat that cancer, and thanks for sharing this.

A good friend of mine was recently diagnosed with Cholangiocarcinoma, which sounds like a similar cancer, although it has a much lower survival rate. For him they are going to do this procedure where they drag a radioactive bead through the channel where the bile ducts are. This basically kills off the cancer, but also kills the liver, so after this they will need to do a liver transplant. He's camped out at an apartment in Minnesota, at the Mayo Clinic which is one of the few places in the US that does this procedure.