May I whine a little please?

I apologize going in to those that have this disease and situations far worse than I. I am genuinely lucky to be on the soft side of this disease, but being the whiny little boy I am, I need to vent.

I had my eighth cysto this morning, and it couldn't have been more unpleasant. To begin with, the IV nurse missed a huge vein on my left hand, then had to redo it on the right hand. Not a big deal, but unpleasant.

Then, when I came to in recovery, it was like a steak knife was stuck in my gut. My nurse told me I had a catheter in that would need to stay in till next morning. I said not going to happen if this is the source of my pain. Turns out the Uro did some "cleaning" of some scar tissue and I was also bleeding like a woman on her period. The nurse said maybe it would help if she hooked up the cath bag. Maybe? At that point I realized I was wet, from bleeding. So what next?

The Uro came into recovery and said I needed to stay cathed if I could tolerate it. Then came a delauded suppository, three IV injections of versed, and continued and worsoning pain.

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So after about thirty minutes of torture, the Uro finally allowed the nurse to remove the cath. It was like having my insides pulled out.

So I am now wearing Depends to contain the bleeding, taking lortabs and pyridium for pain, and wondering if any of this was necessary. I was told the surgery was done so I could urinate without problems, but I was never asked if I had a problem going, and I haven't had that problem. It seems to me that this Uro decided I needed some help I didn't ask for, and I'm a little pissed about it.

Again, my apologies to those of you having a rougher time, but I really have no where else to go to vent. Thank you all for being there.

JohnnyB

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Johnnie, I, too, have found it hard to be grateful, because there are less fortunates, when you're burning, leaking, in pain, etc. So, whine on, since this disease sucks. Roybean

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Whine away Johnnie, you have every right this disease sucks

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Whine away !!! It really does help to get it off your chest. There are a lot of people worse off then we are. However, we too, can have our turn to whine. When I read about other complaints that others have it help me to realize that I am not alone. We do have each other, and we are all here to listen and be listened too. So, don't be sorry !! We do know what you are going though, and know that you are not alone. xxoo Buddy

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OMG, I read with discomfort your whining, go ahead, and whine, please. And 8th cysto! I've only had two, guess that is what I have to look forward to. Is that what happens, it just goes on and on and on? Are the times inbetween getting longer, how long has 8 been? I've had two the past year. Is this the future? I read this can be controlled with maintaining high ph levels in urine, and alkaline diet? Please continue to share and whine. I cried like a 7th grade school girl last week with irrigating and declotting when I was in hospital with catherter as big as a garden hose in me. And once, in the middle of the night, I had a clot that was tooooo big to pass, I started crying, the nurse came in, and her 'muscle man' in his stna USMC and was insisting I 'sit down', when the pain was unbelievable. I was dripping blood on their floor, and then another stna heard the commotion and came in, and said, 'I know what to do', and she had a cross around her neck, (an angel sent from God) and she shot water up into bladder (very painful) but removed the clottage, and then I was fine. Strange, the nurse said, 'i don't know what to do', the muscle guy is saying, sit down, and then the angel appeared and relieved me. Thank you for sharing, and helping me. I hope I can help others too. So let's 'whine' and 'cry'. :-)

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OMG, I read with discomfort your whining, go ahead, and whine, please. And 8th cysto! I've only had two, guess that is what I have to look forward to. Is that what happens, it just goes on and on and on? Are the times inbetween getting longer, how long has 8 been? I've had two the past year. Is this the future? I read this can be controlled with maintaining high ph levels in urine, and alkaline diet? Please continue to share and whine. I cried like a 7th grade school girl last week with irrigating and declotting when I was in hospital with catherter as big as a garden hose in me. And once, in the middle of the night, I had a clot that was tooooo big to pass, I started crying, the nurse came in, and her 'muscle man' in his stna USMC and was insisting I 'sit down', when the pain was unbelievable. I was dripping blood on their floor, and then another stna heard the commotion and came in, and said, 'I know what to do', and she had a cross around her neck, (an angel sent from God) and she shot water up into bladder (very painful) but removed the clottage, and then I was fine. Strange, the nurse said, 'i don't know what to do', the muscle guy is saying, sit down, and then the angel appeared and relieved me. Thank you for sharing, and helping me. I hope I can help others too. So let's 'whine' and 'cry'. :-)

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Whine away Johnny....I would be whining louder than anyone would want to hear if I had the problems and pain you described.
That sounded downright awful!

Hmmmm...now you have my curiosity going with regard to the procedure. I would definitely be talking to the doctor and asking him what the hek he did and why you were told the surgery was done so you could urinate, when you did not have any problems urinating. Did a nurse tell you that? Because, regretfully, with all due respect to nurses because I am one, sometimes they tell patients things that aren't right or can misinterpreted by the patient as well.

Anyway, I hope every day gets better for you. I feel your pain! OUCH! Be sure to monitor the bleeding. If it seems to increase, don't hesitate to WHINE louder and call the doctor no matter what time of the day or night. That is what he is paid big bucks for.

Wishing you the best......in the meantime, will send you some cheese to go with your whine. :-)

Cheryl

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Ouch is right! Good luck and God bless.

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Ya know, the 'healthy' population really has no idea what a cancer patient goes through physically or mentally with each test or treatment - I certainly didn't until my husband was diagnosed with it and I've seen first-hand all that he has endured. But you can be sure, it's OK to find a place to whine and not be judged. Seriously, part of dealing with this illness is being able to vent. Do it here or somewhere else so that you can maintain sanity. And you remind me that there are lessons to be learned or reminded of by reading posts on this site - so thanks for sharing - you've helped me.

We are fortunate that our docs and nurses have been very specific about what they're doing and when/why they're doing it with each treatment or procedure. A patient needs to know what to expect and it's your right. I liked that the docs would give us examples of more than one scenario depending on what they encountered in each situation (if it was possible that something might get complicated). This surely builds trust and faith in the care my husband receives. It has helped me to expect that kind of information everywhere he goes for care and, if we're not getting it, I make sure to ask all the questions that come to my mind before they do anything. And I work hard to remember the questions my husband has had that may come up while we're at home or wherever. 99% of healthcare professionals will respect you for getting involved this way. When all these things come together, you really do start to feel that you are part of a team. Nobody wants to feel like things are being 'done' to them.

I think it's important to ask questions whenever you see something that doesn't make sense or that stands out to you in some way. There's nothing worse than looking back and wishing you'd asked a question that might have had a big impact on your care or quality of life. This is especially important when you have a change in care between doctors or healthcare facilities because I can testify that things can be over looked, balls dropped, or information not shared. YOU are in charge, YOU are the boss of your health at all times and the docs and nurses all report to you!

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If you have some free time and would like to read a related story of how I handled things after an incompetent doctor nearly killed me, go to my profile and search my post, "Where I am and how I got there." You might learn something that would help you take control of your own destiny. You might not too but it sounds like your beginning is pretty similar to what mine was. I had a rare untreatable, indurable form of BC and now I'm cancer free but it took a lot of doing on my part to make that happen. IF I had left my treatments up to my first doctor, I'd be dead and gone by now. Doctors are not Gods even though some of them demand to be treated as such. They are just people just like us who when to medical school instead of mechanic school. I wish you well.
Happy Trails

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Are you sure you had a Cysto done & not a TURBT? It sounds more like a TURBT procedure to me ...??? My husband also ALWAYS has much pain, discomfort, & bleeding after the TURBT's. He's ALWAYS had to come home w/ a huge catheter in him for a week afterwards. The last cath he had in leaked like crazy, so he wore Depends too. And, that was on Xmas Day! I HATE that my hubby has to go thru all that torture. It almost seems like having an RC would be better than going thru all these Scopes & TURBTs on a regular basis.

Best of luck to you! I feel your pain from a Caregiver's side .... it isn't easy!!

Maureen

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waaaaaaaaaaaaa! or Grrrrrrrrrrrrrr, they both feel great, when needed! Whine away, perhaps with a glass....

I woke up from my last cysto with the uro saying to me...."I'm not happy about this, and I let them know it, but they didn't have a flex scope available so I had to use the straight scope (small width for the flex vs. 9mm for the straight version) I bled like a stuck pig, hurt like hell and went through all of that, probably cause the other scopes were being sterilized or......and the doc was not about to wait around or come back later...so? I was soooo pissed off. But, as the group said: "hurray the test came back negative--no cancer--woo hoooo" I guess, ultimately, that's the goal, right?

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You know when I first found out that I had bladder cancer they were always cathing me,and it was horrible finally my oncologist told me that a cathiter wouldnt work because the clots are blocking the urine from flowing but since I had started chemo I had been peeing like I have never peed before but since I am on a blood thinner my clots have been breaking up and I pass some occassionally and holy shit they burn like a mother...but I feel so much better once they pass and I even think I have been passing a little bit of the tumors too. good luck to you and I hope we all get through this,sick of being in pain and not being able to take one pain pill that doesnt kill my stomach and make me feel worse!!

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Go, Johnny, Go-
I've had 19 cystos- and mercifully, my uro is quick in, quick out- though I told him, no one ever accused him of being gentle, he know what he's doing- never had anesthesia for a cysto up until last time when it was combined with a 6 point needle biopsy of the prostate- I have also had 96 bcg treatments- not bragging about these as combat wounds, just saying that I will endre anything rather than surrender to this beast-
Stay strong, bro-
What guitar is that? I play a 1957 Gibson archtop-

Tony

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Whining? What whining? Having shared your experience I find it to be justifiable "Doctorcide". I fired mine and found another one. Case closed. If we haven't discussed it and I realize there is the potential that it might be needed.....then don't do it.

One of the reasons I am an advocate of finding a large well documented center that deal with this daily.

Good luck and I hope you get relief soon.

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Tony, that's a Hamer Artist semi hollow body. No longer in the stable. Got replaced by a Hamer Newport Pro full hollow body. That shot was taken just before Katrina in the New Orleans House of Blues.

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Wow. I read it Katuha. See why I apologize to those that have such a harder time than I?

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Never apologize for anything you need from any of us here on BCAN and never feel that your problems are less than anyone who may have more to deal with than yourself. Hey man, we all have horror stories but I don't want you to have an even bigger one later. You have to keep control of "everything" that is done to you all along the way and never just let the medical people have their way with your body. They WILL F... you up. Always ask lots of questions and get answers before anything and everything. If there are decisions that have to be made, YOU MAKE THEM along with professional advice and based upon your personal research, of course; but you make them. Do your due diligence research and learn everything you can about what you have so you are totally informed and not just another dumb patient or slab of meat on a table. (I love my Doctor, buy the way. This last one saved my life but the first one would have killed me and not looked back.) I've never been a model patient and I'm not patient at all and I have never cared what medical types may or may not think about dealing with me. It's my ass, not theirs and if there was any way for a cure, I demanded and got it.

This is the best advice you will ever get in my opinion but I'm biased, of course. You can help save your own rear end (metaphorically) and the rest of you literally. Happy Trails

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Go ahead and whine! Completely agree with OrangeforGood that the 'healthy' population really has no idea what a cancer patient goes through." It is a rough road and this is one place you can talk about it freely.

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Johnny, this is one place where you can whine, bitch, moan, and complain, and most if not all of us will understand where you are coming from............Sounds like you got mis-treated, and I would be complaining and whining too if it were me. My experiences with the medical treatment community has been exceptionally good, but like Katuha has said, if they are not treating you the way you deserve to be treated, pitch a bitch.

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