Not too good

Hi Sue,I’m going to send you a private message later on but it is possible to lead a normal life without a bladder.Not that life feels normal in the pandemic but I’m living life much as before.We are all here to support you through the cystectomy.Love Jane xx

Hello Sue

You have the same diagnosis as me and the same treatment plan. I'll send you some tips about the chemo experience. Have you decided which reconstruction to have yet, neobladder or conduit/stoma?

CB

Aaaaaw xxcv I think it's what we all fear once we've got over the initial shock of the cancer diagnosis.   

Winkers et al will sort you out, & I dare say that CB will be along soon too xxx

He did, & beat me to post.  Trust them they're a great bunch x

That’s a lot to take in Sue but CB, Jane and others will be able to guide you through what lies ahead.

Stay positive and keep posting on this site, even if it’s just to have a rant. We’re all here for you.

Luce xx

Hi,

The basic stoma sounds okay. I dont want anything that adds to complications or needs more maintenance.

The ct scan showed other worring things like enlarged adrenal. She said ct scan show stuff you would live with forever without any problems. However they want to have another look. Its too many worries at once. Im assuming its big doses of chemo as well. 

Sue.

Hi Sue,It does feel overwhelming to begin with but if you choose a stoma you will have dedicated stoma nurses to guide and help you before and after surgery.Hopefully you will have a good specialist nurse to support you as well.Love Jane xx

Sending cyber hugs Sue. Sounds like medics are being very definite about your treatment plan which I think is positive, in my experience NHS doesn't let you think they can sort things if they cant. Live for the day and hope for the best is my mantra. Can you do something relaxing and distracting this weekend? I had the last of 3 BCG doses on Wednesday and been feeling pretty floppy. So curled on sofa I binge watched all 3 episodes of the Murdoch documentary on tv, eating dollops of home made black-currant jam on buttery toast and far too many shortbread biscuits. Cheered me up  Don't forget we're all with you Sue xxx

Yes, might not be what you would choose, but there is something beneficial in the medics saying decisively, this is the best course of action. Treat it as a project to gain you good health again, even though you know the treatment will make you feel bad for a while.

Any questions as you go along, fire away. Hope all proceeds smoothly for you.

Just sending you love and hugs Sue xxx