Shell Shocked

Hello New2This,

I am really going to be confusing alot of people here on the board.

Okay, My appointment has been changed back to, July 18th :-\

My first intial visit was the 18th, I called them and asked if he would be doing a Cysto at that time since it is the first time to see him. They said no since he comes from out of town and they would have to set that up with the hospital. I told them my situation about over the 3 months and blood in the urine. For that reason, they set me up to go there on the 17th.

Next thing I know, there is a letter in the mail stating they were able to get me scheduled in at the hospital here on the 18th, so I guess it will be the 18th now.

But anyway, please let us know what you find on your husband and I do hope you are holding up okay. I know the waiting and the unknown is the hardest and being a caregiver is just as hard if not harder. I know the feeling of helplessness comes to mind when my sister was so sick and dying of cancer.

Hang in there, New2This, and feel comforted to know many on this board are keeping you in our prayers and thoughts.

Alice

Alice, I see the 17th is a big day for you. I will add you to my prayer list and pray you will get a good report.

Hi Teardrop,

Wish I could wipe that tear away and make things better for you. I completely understand your worries and fears now. I truly am so sorry you had to go through that. I would be just as nervous as you and sounds as if you have every right to be.

My next Cysto is the 17th and I know this may sound odd, but I really am looking forward to it. I get to see a new Uro in hopes this one will be the right one this time. I am past due for my 3 month and already see the blood, so I am ready to get in.

I too, welcome you as a new friend and I am so glad you found this forum. Just make sure you keep coming back and keep us posted, okay

Wishing you all of the best.

Alice

Allice, This has helped so much. My next cysto is the middle of Sept. After reading all the wonderful notes, I will try not to panic if I have to go back to the operating room. My first surgery was sucessful, however the docotr "nicked" my bladder, so all the water used to flush out the bladder was in my system and my electolites went down to almost nothing. I was in CCU for 24 hrs until they returned to normal) I know that is why I am nervous about returning to the OR. I had six BCG's - with very little side effects and my doctor said that was enough. I am going to question him in Sept. (I have questioned everything so far!)
Please know you have a new friend watching out for you, Alice! When is your next Cysto?
Thank you to everyone for the great response and information. Being totally informed is much less freighting.

Well, my friend, teardrop,

Looks as if you have received alot of great and knowledgeable responses. I truly do hope they have helped bring some light to the subject and have brought you some comfort.

I am curious when your next cysto is though. Will it be soon?

I have been fighting mine for over 2 years now and still waiting for a clean cysto, but I know my time will be coming

I do hope that you will stay in touch and keep us posted to let us know how you are doing.

My best wishes go out to you and your loved ones. Please take care!

Alice

Dear PW,

I am so glad that you posted here. I was down to one third solution of prescribed BCG, but, the burning and bleeding was so bad after the 12th instillation that I have been discussing with my Doctor the idea of discontinuation of maintenance BCG. I was getting the idea around here that intense bleeding and burning was NOT a normal response to BCG.

I am going to rethink this. If you can do it, I can do it. I am also glad to know that Dr. Lamm is recommending biannual maintenance treatments. This makes the maintenance idea a little easier to bear for someone who has a miserable time with BCG.

It is also very nice for us to hear that your have not had recurrance. Thank you very much for sharing your story.

Regards,
Rosemary