New to this...

Sorry to hear things are that bad, but plenty on here live their best life even with a stoma bag. Chemo can get very rough on people that's for sure. 

But you can get through this there is lots of good advice and support on here. 

Can't really help any further but you are not alone plenty on here in similar situations to yourself. 

The not knowing does make it tough but at least now you have a treatment plan going forward. 

Hi PEB and welcome to the group and we know how daunting the prospect of treatment can be but be aware treatment can be successful. When you see your oncologist they may offer the alternative of radiotherapy which is the option I chose for MIBC. Many here have had cystectomy and will be able to help if you go that way. Once you find out your planned treatment there will be lots of help and support to help you through it. Best wishes.

Hi PEB,Welcome to the group,A few of us here are managing well without bladders and can help and advise you when you have your surgery.I hope you find it helpful here.Best wishes Jane 

Hi PEB,

Welcome to the club. I was diagnosed in 2022, had chemo and then bladder removal in January 23. If you click on my name (and others') you can see a summary of what we have had done.

I recall the shock of finding I had bladder cancer, not least as I hadn't smoked for 50 years (having given up after my mother died of it - she refused to see her GP until it was too late).

But, having intimate knowledge of what could be the worst case, I immediately accepted  bladder removal and told my husband I'd just have to learn to deal with a stoma and bags and not to worry. Although, like you, at that stage I had no idea what was involved. (It didn't take long to learn.)

And that has been exactly what has happened. In fact it's all quite straightforward, being tried and tested over many years.

I can't say I was pleased to have cancer and it has been tough at times, especially for my husband and family.

Chemo was tiring and the operation is long but if you have it done robotically as I did does not take long to recover from, especially if you keep exercising while being treated.

But we have all coped, quickly resumed normal life and have got on with it. After all, people with stomas climb mountains and swim the channel.

I suggest you look at the Macmillan bladder cancer booklet which is good on the cancer. You can download it or get a printed version.

For information on stomas there is the Urostomy Association website. It's free to join and they often have online seminars where we discuss relevant topics and you can meet people like us.

And you can ask any of us here  online any questions you like about that and the treatment. We've all lived to tell the tale so I'm sure you can too.

I hope this helps demystify things a bit.

All the best,

Latestart

Simon, I had a RC in Nov 24. Doing well now

Thank you so much... PEB

Thanks a lot - a real help, best, PEB

Can't tell you how, learning more of other people's experience helps at this stage. I saw the excellent oncology consultant a couple of days ago and at least there is a clear plan in place, with - it seems to me - maximum care surrounding it. Thanks again. Best, PEB

Good to hear you have a plan.It gets easier mentally once you know what is happening.I’m glad you are finding the group helpful.I joined almost 7 years ago and was terrified at the thought of cystectomy but it was not as bad as I feared.I hope it is the same for you,it’s amazing at how quickly you can adapt to living with a stoma.Best wishes Jane 

Thanks so much - hard to imagine a new normal with no bladder, 'cos right now I'm full of trepidation about the GemCis chemo and then the surgery and possible problems along the way. But hope springs eternal!