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dead man not walking

LOUSWIFT
Posts: 372
Joined: Aug 2006

Well been quit a while since I posted. I've just been overwhelmed by all the side effects, I have been unlucky enough to endure these many years. I don't have a laptop so since I spend most of my life sitting on a toilet, it's a little difficult to get to my computer. The doctors have tried everything they know but nothing works to control my diarrhea. They have scraped; tested; scaned etc etc. but have no idea why I must hit the toilet about on average about every 30-60 minutes. I can increase frequency by attempting to lift something more than 20 lbs or walking more than about 30 yards. This includes night hours when people are supposed to sleep. I consider myself fortunate to get a uninterrupted hour for sleep. My chemo-induced chirrhosis I must give credit to my liver. It has been damaged significantly by the chemo but also they have found that my kidneys and pancreas have been damaged as well. I have had an open wound on my foot for over a year. The chemo peeled the skin off my feet and hands so I easily get what they call friction wounds which love to get infected  I am taking insuling now because my liver often kicks out too much sugar; my pancreas doesn't read the additional sugar and my blood sugar soars. My kidenys are damaged but holding their own. I have a huge umbilical hernia which is caused by my liver leaking fluid into my abdomen from it's damage.After all the chemo, it failed to stop the rectal cancer and two years later becoming colon cancer. Then the wonder drug Folfox...it did nothing to stop the colon cancer from traveling to my liver after surgery but the chemo did manage todamage my healthy organs. Currently. I have three lesions on my liver they have been watching over a year. One Oncolongist thinks it is cancer while my second oncologist doesn't think so. This November I get tested again to see if the lesions are cancer or something else. Historically, it shoiuld be cancer because I seem to develop cancer about every three years.No more chemo for me....not ever. I suspect this will be the end of me. Maybe it's about time. Cancer treatments have done so much damage to me and my life. My family has had my life greatly impact on theirs, it is amazing through all I have put them through not knowing if I'm coming home from the hospital or if I find another incompetent doctor who kills me. I have three beautiful grandkids in New Jersey but I can't get on a plane tosee them. They'd throwm me off the plane from the stink faster than someone with Eboli. Besides it looks like my wife and I are going to lose our outstanding helath care insurance and be forced into the crap (LOL sort of irony in my case) Obama has pushed upon us. I can't afford the high deductibles or premiums and I won't force my family into bankruptcy. So all these many years wow since 2006 for your support I have gotten and allowing me to vent thank you!! I know I have not been a postiive person these last few years so I have stayed out of trying to give the benefit of my experience to others. Best of Health to all of you Louswift

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I am so sorry for what you have had to endure. We don't let our pets endure what you have been thru. It seems the further you get from the original problem the worse the collateral damage. I don't know what you can do about the toilet issues. There is only one avenue I can suggest that helped me. My problems were caused by bile salt malabsorbtion. I take a sachet of stuff called quesstran lite every morning with a glass of fruit juice. The bile salts adhere to it and arre taken thru without causing any problems. I hope your foot heels. I made it to type two diabetes thanks to a fool of a nephrologist putting me on 75 mg of steroids daily for over 18 months. Actually my diahorreah is a thing of the past. They put me on targin for pain . It is oxycodone and naloxone. The naloxone is supposed to stop opiate induced constipation , but it doesnt. I take two dulcolax and 240mg of coloxyl with each dose of targin.My kidneys are in nephrotic syndrome . I was losing over seven grams of protein a day. I take 150 mg of cyclosporine daily to help plug the leak. Since I have been on the cyclo my liver functions which are always in the red have returned to the black for a short while. My nephrologist thinks I suffer mild auto-immune hepatitis . He keeps suggesting a short burst of high dose pred and I keep telling him to take a running jump.  I don't have to worry about fmily . My first wife dumped me years ago and my second did the same when I got cancer. I live alone and manage to get bye. My suffering is a bit like the tree falling in the forest. If there is no one to hear it I guess it doesn't exist. That is fine by me. All the best mate I hope something turns around for you soon....Ron.

LOUSWIFT
Posts: 372
Joined: Aug 2006

Hi Ron

We have been talking all these years. My wife and I have stayed together mostly because financially we can't afford to live apart. To her credit my wife does what I used to do when I was more of a man. She does the yard work; and most the stuff one would expect a man half of the marriage would normally do. No I'm not sexist I have been married for many years and before my cancers I am refering to what I did and she did other things. Now she does most of what needs to be done: finally she takes care of me on my standard bad days and especially when they become very bad days. Would she hang around if it wasn't for the way are finances are structured...I don't know and I'm glad I haven't found out. You might say we are more roommates then husband and wife anymore. It sounds like you don't trust doctors and that is the only way to go. I was a fool and didn't take charge of my health problems when my first cancer came along. I left it to the expert doctors to help me. They know best...was I wrong. I didn't realize I was immediately transformed into a billing number and no longer a person. Amazing on the number of cosulting doctors that come out of the shadows when BMW payments come due. I had a doctor threaten to drop me as a patient because on a questionaire I answered for him I said I don't believe there will ever be a cure for cancer it's a cash cow industry and no one going to let that end with a couple of pills. Ron I think the both of us after all this don't feel we have much value and get angry. Well nothing wrong with that. Take care Ron! Lou

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

Well Louswift, I have to say that if this is your version of cranky, you're a great cranky person.  I'm realy sorry that's all happening to you.  Haven't walked in your shoes so I can't contribute but sure do know what it's like to stink with this ostomy.  Pass loud gas in front of an entire room of people too.  I really hope your grandkids can get to you.  Did they ever think about starting a "fund me page" for plane tickets.  People donate toward their tickets, it's very popular and I bet they'd get a lot of response.  Everyone deserves to see their grandkids.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Lou we joined in the same year back in 2006.  You are not a negative whiner.....honestSmile

I am so so sorry to hear about all your complications.....gosh the bathroom issues sound just miserable......it takes its toll my friend.  Sorry Lou no good advice.....sending love

mags

LOUSWIFT
Posts: 372
Joined: Aug 2006

Thank you for your suggestion but money is not the problem until Obamacare hits my wife and I. It is my physical problem with diarrehea from all the damage I have had from many bouts of chemo. I'm trying not to be funny but there are no seat belts in that tiny toilet on the planes. My flight is 4-5 hours depending on connection(s). Can you imagine my problem with the odor and I assume everyone would think I have Ebola. 

hippiechicks
Posts: 509
Joined: Sep 2012

I wish there were easy solutions to these war wounds we share.  But, it seems as though we all have them and struggle daily with emotions as well as the physical.  I am so sorry that you seem to be having an exceptionally difficult time .. not having a doctor you trust is even more difficult.  I do know how you feel with that .. I have similar issues .. but try not to let it hinder my care.  I try to stay on top of things and fight for what I need.  I fight I have. 

So, one question, have you ever concidered an ostomy for comfort measures?  I seems you many have a better quality of life and possibly more control of things.  Have you spoken to a good surgeon about that option ever?  I feel as though mine would actually recommend one for me if I was house bound and so uncomfortable. 

I hope things turn to a happier, more peaceful place for you soon ... 

 

LOUSWIFT
Posts: 372
Joined: Aug 2006

I have my six month CT/scan and blood tests. We will see then if my 3 lesions on my liver are cancer; turned to cancer; or just cysts or whatever. If cancer...then this is the end for me. I figure I might make it past Christmas and maybe my birthday My Gastro doctor said he felt with the damage done to my liver by the chemo he felt that I should have liver failure in 4-14 years. My birthday in spring makes it four years. It has been a battle chemo induced cirrhosis or cancer which will finally kill me. So a ostomy won't matter if its cancer or liver failure. BUt I have thought of having it done. I just hoped some how someone could identify why this happened. It started about two years ago and thus the doctors started their trial and error drugs to control it. There are days if I take 10-15 imodium three or four at a time I can get a couple hours of toilet break but the restart is never known and the odor and diarrehea can put me in very embrassing situations not only to me but my wife.  Plus there are all these warning about it and I don't want to damage something which chemo has not damaged. I'll consider a ostomy again if the lesions are not cancer. But in truth I don't care if they are. Too bad I didn't realize that chemo does nothing against cancer but can destroy your organs. OH my Oncologist when I confronted him and the Hosital about the neglect in care ignoring symptoms they circled the wagons. I believe they claim it was aliens that did all this. After all my ex-oncologist was world renouned and director of the department and I'm just a billing number.

UncleBuddy
Posts: 1019
Joined: Aug 2013

Can't they give you something stronger than Imodium? My brother takes Lomotil, it helps a little. He was going many, many times during the day, but taking Lomotil has reduced that a bit. I don't know if my brother's constant bowel issues were caused by chemo or the actual surgery. He had a lower anterior resection. His was rectal cancer, but now he has 1 met to the liver and about 7-8 in the lungs. His colon is okay, so far.

I agree, maybe your family can use Fundme to get everyone to see YOU! There are a lot of good people in this country.

I am sorry that you are having such a hard time. You should be able to trust your doctors. I just recently changed my brother's cardiologist. He is an excellent doctor, but I feel he abandoned my brother when he needed help with his clotting issues. He pawned that off on his internist. Now he is on Xarelto, so monitoring his levels is unnecessary.

Vent, vent and vent some more. That's why we're all here. Some people have good healthcare and others get screwed. I won't even get into the financial situation my brother is in right now because of his insurance, and it has nothing to do with the Obamacare. I'm working on trying to get some of these issues resolved, we'll see how it goes. You can't get blood from a stone...

Feel better.

Lin

janderson1964
Posts: 2215
Joined: Oct 2011

I am sorry to hear about all of your issues. I consider myself very fortunate to not have any real issues after 9 years of abusing my body through cutting poisoning and burning (surgery chemo and radiation) for those that are new to this.

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