Long term effect of BCG treatment

Hello Jacaranda007, Thank you for replying so quickly. It helps to know that I am not alone in how much pain and discomfort I am in. Haven't had any information from the urology department as to what I could have expected after the treatment, felt quite abandoned. Interested to find out that you too have difficulty walking. 

It seems that unless you ask the relevant questions the medical staff don't offer much advice on treatments or follow ups. I do ask about the pain and discomfort but there doesn't seem to be any help with that in finding relief. I have contacted the nurses in the clinic by phone in the past just for someone to listen to my problems but other than that you do feel a bit alone I agree. 

Stay on this forum though because there are a lot of us having exactly the same problems, it does help sharing it all.

Jacaranda07 Hello

Its interesting reading about yourself and tommyboy airing further reactions. Its just not me feeling much more comfortable sitting upright with a hottie on my back than lying in bed also cannot walk too far now with stiff leg joints.

I asked the urology consultant I saw recently about this he seemed to think it was nothing to do with the bladder problem. This same consultant gave me the medication I am on telling me we will try these if they don't help then I have a plan B and a plan C - make of that what you will. My oncology nurse I speak to frequently says the only thing is time!

I also find cold weather (like it has turned today) doesn't help.

It is so helpful sharing and talking about these problems with people who really understand.

I recorded the number of times I visited the toilet in 24 hours a few days ago it was 18.

Hello yewdee, I had to record my urine input and output for my Doctor last week, Day 1, visited the toilet 18 times, Day 2, 24 times. Doctors and Nurses are sympathetic to a certain extent but I am not absolutely convinced that they believe me. I am also a diabetic, so everything is  blamed in that. I am so happy to have found this chatroom today, thank you .

Welcome tommyboy you have an extra load to bear which makes things even more difficult.

It's so good to have all this extra input. My wife refers to the toilet as my "second home." I agree doctors and nurses are sympathic but don't really fully appreciate how much it can change your life, really limits what you can do and where you can go. To be able to have this discussion with others who really know and appreciate the problems is uplifting.

Thankyou

I said to my wife if the toilet was big enough I'd move my bed in there. Good job we can joke about it.

TBH the answer is Tena pants. My Oh has stopped panicking when out/nearly home, which is better for both of us.

Denby

Can you get them on prescription? (only joking)

He saw the incontinence service. Woman made it plain that they would not. In London/Essex my mum had all the free deliveries she needed 2010-2014. Woman sent him a pair of washable inco pants which it would be an insult to the Victorians to call Victorian! Uncomfortable and not giving any of the totally critical confidence against leaks at all. Huh.

Denby

Hello Denby, I know they have greatly improved that product to make them more comfortable which is so important for the wearer. Must make it an expensive necessity though. I know my mum had an incontinence nurse visit and the products they were willing to supply were awful.