Going through it tonight…

Evening Nige. Sorry to hear you are in some discomfort. No medical advice but just the usual "Are you drinking enough water?"  You probably know not drinking irritates the bladder causing the annoying dribbles. As always, contact your team if you have any concerns. Best wishes.

Evening Rily, yeah I’m not sure…gonna have a glass of water now…I think the food I’ve eating has irritated it…

Morning Rily, had a glass of water around 11pm…although I’ve been to the loo 4 times throughout the night the flow and less pain was there…I’ll take that…thank you as always.

Nigel x

Just had a cracking two hours sleep…I think that’s the deepest I’ve slept for ages….

love to all xx

Hi all not posted in a while had a summer beak after a difficult 12_15 BCG installations. Just started 16-18 and it's hellish constant need to pee passing grey lumps of what I assume is bladder tissue and drinking not drinking having little impact. Recovery seems to take a few weeks after each round obviously want to crack on but wondering if I'm reaching the end of the BCG road. It's all the symptoms I expected but seems to be turned up to 11. Anyone else having similar this far in? 

Just that this post prompted me to ask, so thankyou as ever

Hi Andy, in my experience BCG symptoms do get worse the more doses you've had.  But my cancer kept reappearing so that was very motivating to keep going! After I finally completed 27 doses my bladder was inflamed for a long long time. At my flexi cystoscopies it looked just like a grazed knee! However I am now all clear 8 years after diagnosis so I feel it was all worth it. Drink, drink, drink. Make Robinsons Lemon Barley your favourite tipple, treat yourself to any food you enjoy (my go-to was always cake) and distract yourself with whatever catches your imagination (mine was junk tv) but other folks on this site get hooked into their music or footie teams You just have to rise above the bad bits with a view to a healthy future. Good luck, sending love Hx 

Hi Andy, 

I had what was called chronic inflammation after my 18th instillation, and this was still showing 7 month's later in my biopsy. Lot's of wee trips and interrupted nights for quite some time.

The biopsy came back clear thankfully, just the inflammation. Number 19 was supposed too take place in September, but has been put back by another 6 weeks.

Thankfully things have improved, but I'm considering not carrying on with the BCG. I'm worried about permanent damage, plus other things. It's a tough decision for sure.

Some trusts only do 18, so I'm pleased to have got this far. 

So you're not alone in your discomfort, my consultant has mentioned reducing the dose and only having two instead of three, but I don't know yet.

Best of luck with your decision, future treatments.

Trevor 

Thank you both really useful and uncomfortably reassuring I'm not out on a limb keep hoping I'll get a decent dose of 3 but deffo getting worse and last cyscoptopy a lot of damage was noted. Take the point re hitting 21 and long term gain. I can't hold for 2 hours anymore but every second counts I guess. I dipped out of last week's as had COVID which was actually a relief as bad as that sounds. I'll dig in and put my big boy slightly damp joggers on. Obliged

Yeah on my 18th I struggled to hold for an hour.. I mentioned it to my consultant and he said an hour is fine...

Trevor