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Questions and venting

4 years 11 months ago #48252 by JodieG
Well, I've had 3 treatments now at Moffitt, and as long as I get Cathy as my nurse it is really not too bad at all. She was a little concerned before she cath'd me for the procedure yesterday because she said I was red. I haven't been experiencing any pain or any fever, but she mentioned infection is something they're always on the alert for, so hopefully everything's ok. So I'm halfway there. I had the frequency, urgency, burning issues yesterday that started a couple hours after the procedure which happened in the morning, and that lasted until around dinner time. Since then just pain when urinating. Fatigue comes and goes. I get a twinge pain I think it is in my urethra every once in a while. Anyone else have a redness that turned into something to be concerned about? Or is that normal? Thanks so much in advance for your help!

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5 years 11 hours ago #48109 by AnneH
Glad you had a somewhat better experience at Moffitt. They really need to work on that issue with their staff.

I never had that problem of not able to sleep. Maybe you were so anxious before the treatment it just took sometime to relax.

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5 years 15 hours ago #48107 by JodieG
Well, I went to Moffitt yesterday and the experience was WAY better than the previous week's was. It started out a little shaky - they tried to take my vitals twice (right hand didn't know what the left hand was doing) and then the nurse told me she could see this was my 2nd treatment - uh no - this would be my first. My 2nd nurse, however, was fantastic, had no problems whatsoever, was calm and nice, and it was just a much better experience. So far I just have felt fatigue, but I'm also experiencing insomnia! I'm usually a pretty good sleeper, but after getting to sleep around 11pm I woke up at 2am this morning and I haven't been able to get back to sleep at all (it's now 5:30am)! Ugh! Anyone else have that problem? Is that normal? I'm not feeling worried or anxious or anything - I just can't sleep even though I'm so tired! That was not listed as one of the side effects but I'm just curious if anyone else has that?

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5 years 5 days ago #48071 by JodieG
Thank you so much for your response! The only alternate place I can go that my doctor has privileges is out of the BCG, so it appears I'm stuck with Moffitt. My nurse called Moffitt and spoke with the nursing manager there and the patient relations department and urged me to go back on Wednesday. She said if there is the slightest bit of a problem that I could drive to my doctor's office and she would cath me herself and I could drive back to Moffitt (they're about 1/2 hour away from each other). Not something I want to do but at least she obviously cares! I'm absolutely dreading it, but at this point I guess I have to go back to Moffitt.

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5 years 5 days ago #48070 by JodieG
Hi, Anne. No - I'm at least an hour away from Clearwater and at this point I just need to get the BCG treatments asap as I am 5 months out from diagnosis and have waited too long. Establishing myself with a new doctor doesn't seem to be a good option for me, plus, with BCG being in such short supply I would be surprised if your doctor had any. I called Merck, the manufacture of BCG, and they said they are scheduled to fulfill orders placed since November 26 in the next week or so, but many facilities are out or very low at this point. I'm sorry you also had a bad experience at Moffitt. where are you in your journey? Have you had chemo yet, and if so, how has your experience been?

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5 years 6 days ago #48052 by AnneH
Sorry about your experience, where do you live I'm in Clearwater if you would like my urologist name. I forgot to ask you that be fore.

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