Recently diagnosed & scared

2 months 3 weeks ago #60268 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Mike, would you be willing to email for additional questions and support for each other? Not sure if that is allowed but just a thought. Maybe a moderator can help make the connection.

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2 months 3 weeks ago #60267 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Ok good to know on the lidocaine. Will ask about that for sure.

How were you the next 2 days after your first BCG? I work from home so not going far the next day and plan on crushing water.

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2 months 3 weeks ago #60266 by mikequestions
Replied by mikequestions on topic Recently diagnosed & scared
I was also very apprehensive about the first treatment, but it has actually been easier than I expected. I now look forward to it each week, because I envision it as forward progress.

I've found that creating some light conversation with the person(s) doing the instillations helps me, and it also helps them feel less awkward about what they're doing. After all, there's nothing really comfortable about this procedure for either person, and you may as well make the best of it.

My team doesn't give Lidocaine without my request. ...Something about making the BCG slightly less effective. Whatever. Though I don't like the Lidocaine, I like the catheter even less. I figure that by the time I walk through the hospital and all the way back to my car, I'm sure the BCG and Lidocaine become thoroughly mixed together.

Mike

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2 months 3 weeks ago #60265 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thanks Mike! I like the 3.5 hour cut off. I think I will try 4 hours cut off for the first time. Good luck to you as you complete your treatments.

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2 months 3 weeks ago #60264 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
Mike

Agreed - no water based movies, music, or imagery :^)

My team always uses lidocaine, but at times I have felt it was equally as uncomfortable as a cath would be without it.

I think the initial 'stay' is to ensure no adverse reactions - my team talked about it, but I opted not to do so - I just wanted to get home that first (and every) time.

Good call on the liquid intake stoppage - I always have issues peeing at the urologist, so for me it has always been a balancing act (usually with piss poor - PUN INTENDED - results).

Ciao

Hi Grade T1 CIS

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2 months 3 weeks ago #60263 by mikequestions
Replied by mikequestions on topic Recently diagnosed & scared
I'm about to have my 4th BCG treatment.

My urologist did not require me to stay for the 2 hours, and also doesn't require me to turn/rotate during the treatment. I was able to go home and relax. I turned on a good movie, and was able to go the entire 2 hours.

I stopped fluid intake 3 1/2 hours before my appointment, and have been doing that for each of the instillations. So far, it's worked well for me and I've been able to "hold it" for 2 hours each time. I totally recommend diverting your thinking with a book, movie, etc. - especially for the last 1/2 hour. Pick a movie that doesn't have flooding, waves, rain or waterfalls in the plot. :-)

Understatement of the year: I'm not a fan of catheter insertion. I've requested Lidocaine prior to the catheter, and it makes it way more tolerable for me.

Mike
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