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Newly diagnosed, had a TURB two weeks ago.

4 years 8 months ago #48394 by Marble68
No, I've not. Not being able to code is a combination of being exhausted, drugged, in pain, and having to get up and pee at least twice an hour. And those events I put off because they're so miserable. :(

I was trying to explain to a client what I'm going through. I'm weeks behind on a deadline now. :(

I will ask my doctor about Pyridium.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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4 years 8 months ago #48393 by Sdca1
I know this may sound unpleasant, but it might be a good idea to ask your doc about a Foley catheter to be placed until the irritation calms down - At least then you would not have to worry about running to the restroom or getting up at night to pee and best of all maybe you could get some sleep!!

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4 years 8 months ago #48391 by DougG
Marble,

Have you taken any Pyridium? It relaxes the bladder and turns the urine bright orange (which can stain your clothes). Sorry you are having so many issues. I'm a programmer too; I understand your frustration with not being able to focus as much as usual.

Best wishes,
Anita

Anita
Forum Moderator
Caregiver

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4 years 8 months ago #48390 by Marble68
So here's an update.

Still blood. Still pain. Still frequency. Still no sleep.

I drink to pee more, which only means more pain - it's feel sadistic. I've never hated water more in my life.

My body has decided that peeing should be joined with an uncontrollable urge to push the pee out. This has become painful, causing me headaches. It's one thing to do this during the occasional bout of constipation, it's another to do this twice an hour.

Getting up at least 5 times a night to pee, minimum. A good night's sleep is a memory.

The pain is constant with peaks during bathroom trips, which are frequent.

Been giving my doctor updates, via email - they call once in a while. Today, they told me they might ask me to come back in tomorrow to get checked.

I'm terrified of another scope. I don't know if I could bear it.

Of all things - it's the lack of sleep. It's destroying my productivity; I'm struggling to work.

I hope I will heal soon.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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4 years 8 months ago #48372 by Marble68
Hi MHY,

I consider myself very lucky too. Even with what I'm going though. Based on some other posts, I feel like I'm one of the lucky ones.

My fight may be different and perhaps more painful than some, but it is less painful and with a better prognosis than others.

So I'm with you - I feel very lucky.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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4 years 8 months ago #48371 by Marble68
Thanks Carol!

I'm struggling right now because of the pain. I'm on pain meds that help, but the reality is when I urinate it's very painful.

I write software and I'm trying to work but it's extremely difficult to focus while in so much pain and with the constant necessity to go to the bathroom.

I'm at the point I'm considering getting adult diapers so I can remain at my desk. I never thought I'd say that, especially while in my 40s.

The Cysto my urologist did of course "inflated" my bladder with solution while he looked around. The result of this (while being very painful at the time) has been a lot more bleeding and pain.

So I'll not be getting Mitomycin any more. If my cancer comes back, I'll not get it and we'll have to see where we go from there. My Urologist is not a fan of BCG because of the side effects. He basically wants to put it off as long as possible because, as he puts in, in his 20 years of being a urologist he's seen BCG destroy a great number of his patients' lives in various ways.

I'm getting up at night at 4 to 6 times, sometimes more, now. I'm desperate for sleep, and that's not helping my productivity either.

I will press through, though. There are no other options but to get through it.

We discussed the mitomycin and how it is designed to kill cells. That is how it is supposed to help recurrence. In my case, it killed a *lot* of cells, burning away the inside of my bladder.

I'm choosing to think that that means it did an "extra good" job on me; I'm suffering for it, but that it killed all the cells that might have turned into cancer. I'm choosing to think it happened for a reason.

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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