Starting my BCG journey todayBl

Glad it went ok for you at least now you can settle down into the routine of these instillations rather than the whirlwind weeks you’ve just experienced 

Ste 

Hi Ste

Yes it has been a bit of a ride. I'm  finding it difficult to navigate this journey so I'm glad that the BCG schedule is organised now. 1 down and 23 more to go. It seems to be a very uncertain path to be on, but no option if I want to try to preserve my bladder. It's a very odd club to belong to but I'm so glad that there are good people out there to connect with.

Ade xx 

Hi Ade I’ve only just been in for my 2nd  TURBT last week and went well just waiting for them to have another MDT to see what they are doing next I think I’m possibly looking at mitomycin hope I’ve spelled that right but not banking on it just going to wait and see what they come up with and decide 

Ste 

I think we have been lucky (fingers crossed) that all has gone well, he’s now on 3 monthly flexible cystoscopies, if all goes well on next one, it’s been 1 year he will then go to 6 months for 2 years then and yearly for life (assuming bladder remains free of cancer)

It is interesting how different hospitals have different protocols, ours has never mentioned bladder removal (he’s high risk non muscle invasive) and 6 BCG’s plus 3 maintenance is the protocol. Jean x

I wish you luck, you might have the constant peeing and maybe pain but you can do it, lots of lemon barley and a nice rest. 

Hi Ste

It's horrible waiting for the MDT decisions. From all the reading I have done I think the second TURBT is to take muscle biopsies from the bladder to check whether its muscle invasive or not as that seems to determine which treatment options are available to us. So fingers crossed that your second lot of biopsies are all negative. I hope you don't have to wait too long for a treatment decision. 

Hope you've enjoyed the Bank Holiday weekend.

Love Ade xx

Hi Jean,

I downloaded and read the MDT Guidance for Managing Bladder Cancer 2013 and that gave me a good idea of what is looked at and discussed at the MDT meetings.

MDT Guidance For Managing Bladder Cancer 2013.pdf

Where is your hospital? Mine is in Staffordshire. 

Ade xx

Hi Bumblebee49

I've drunk loads of barley water today and so far so good. Hoping I get a good night's sleep now and a restful day tomorrow.  

Ade xx

Hi Ade, I haven’t read the MDT guidance, I will have a look.

Our hospital is the Norfolk and Norwich. Jean.

Hi Ade, how was last night ?

I have just had the 1st of my 3 maintenance and surprisingly feeling quite vulnerable today. Have asked Mr Halofan to take the day off work. It is a bit of a rollercoaster, i think perhaps the last 6 weeks i have been able to not think about it so much. Anyhow , getting ready to bleach !!