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Newly diagnosed, had a TURB two weeks ago.

3 years 7 months ago #48673 by Jay
Oh yeah, we read! Same thing here, I went an entire week without any blood, then, "boom," shot some red clots out and another week of blood. Then about 10 days of nothing and once again, shot more clots out, brownish in color so I figured they were just old ones hanging around till they worked their way out. no blood in urine and been good since. The blood bums/worries/freaks me out/wish it wasn't there, but not going nuts as much as I used too! Take care, Jay

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3 years 7 months ago #48672 by MadLove
Dear Marble68,

Yes, your posts are being read. Hope all goes well with your cysto. Wishing you more good days. As for audiobooks, I haven't listened to it, and the topic isn't Sci Fi, but Ray Bradbury's Green Shadows, White Whales is a favorite read. It's about living in Ireland while writing the screenplay for Moby Dick. Best wishes.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...

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3 years 7 months ago #48670 by Marble68
Just an update - I go in for my first quarterly cysto Monday.

I've been feeling so much better. I still look back at how quickly I went from almost constant, excruciating pain to almost pain free.

Yesterday was such a good day - and I was looking and thinking of the future.

Then today there's blood in my urine. Sigh.

I hate cancer so much. It's an evil thing, it really is.

Oddly - this tiny corner of the Internet has become a place for me to sort of blog and post about this. Nobody I know reads it and I know those of you who do know what its like.

Honestly - I wouldn't be surprised if nobody is reading it - but it feels good to at least put it out into the ether. I hope it's not back, but it was high grade.

And if it is - then I get to go the BCG route, which I dread the mere thought of.

So we'll see. I'll pray to Jesus for his blessing and healing, and that He will continue to bless my doctor and work through the medical professionals. I was so happy yesterday and today I'm sitting here struggling to care about anything.

What an emotional roller coaster.

Anybody got any good SciFi audiobook recommendations?

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.
The following user(s) said Thank You: Carolina Wren

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3 years 8 months ago #48608 by Marble68
Another update. My Dr had me on tramadol for the pain and it really worked for me.

I got to a point where I felt I no longer needed it and I ramped down to 1 or 2 a day then quit.

That was about 4 days ago.

My arms tingle, I can't sleep and when I do I sweat buckets. I wake up after one or two hours and pace. The only relief I get is from a hot bath, but it's only temporary.

I feel like I've got electricity coursing through me. It's insane!

I go in for another cysto Monday. Hoping I don't have pain but I promise I won't take tramadol again.

It did wonders for me over the past two months, but I'm paying for it now. :)

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

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3 years 8 months ago #48582 by Marble68
So an update. As I may have posted - I've been on Tramadol (pain killer) that's really helped me. It takes the edge off the pain making it tolerable. I've been getting back to work and more.

Yesterday, I ate almost nothing all day and that evening I had my first near pain free urination in almost 9 weeks. We ate a spicy dinner and I'm feeling it today for sure, but just that tiny bit of relief was so wonderful. I can't describe the relief and hope I felt.

I am getting incrementally better, I can tell. My frequency of urination is improving the fastest, finally. This has meant more sleep, too. So I feel like this is one of the most important improvements for me.

My doctor and I went over everything and we pretty much know my best shot is to simply heal. I have another cysto scheduled in two weeks. I think I'm going do much better with this one than the last (which was about a month ago).

FWIW, in the last cysto, my Dr didn't see any more tumors or cancer; so that's good. My bladder was extremely inflamed and irritated, though.

Overall, this really started about two weeks after my TURBT. So we're about 8 weeks into dealing with this.

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

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3 years 8 months ago #48523 by Marble68
I had another scope and he saw the damage from the Mitomycin. I don't know if thats the same thing - but in reading I sort of got the impression that reactions to Mitomycin was classified as IC.

Heck, I'm really hopping it's not now.

The TURBT spot was healing well he said (from the 2nd scope), but the rest of the inside of my bladder was highly inflamed, and in some areas he said they looked like deep bruises or that he could almost see muscle.

I just went to the bathroom and walking back felt like I was slapping two burn wounds together inside of me.

It's a brutally painful experience and almost impossible to describe.

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

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