Help from WOMEN with NEO BLADDER

Dear Holly,
Boy did I need this letter right now. I am about to call my sister and read it to her. I'm sitting here like a big baby with tears running down my face that just don't seem to stop. I'm still so scared of the neo bladder and scared that her doctor doesn't even do the Indiana. If they find cancer has spread to the urethra then her only choice will be the outside bag. I'm no longer voicing these concerns to her because she seems a bit better since her decision. I'm sorry...I can't stop crying so I'll say bye for now and I'm sending you a huge hug. Love, Barb (I love that you call me Barb because that's what my family called and calls me. Our parents are both dead and my sweet sissy is all I have left and we are so close and have always talked on the phone at least 2 times a day. Thanks again

I had my neobladder in August 2007. I found this wonderful site about 2 months later! With hindsight I would still have chosen the neobladder option as it resembles 'normal' - whatever that is!I am hypercontinent and need to self cath to empty the neobladder. This, however, is not a problem for me as I now have more control and a better bladder capacity than previously! I just need to be organised! The biggest issue for me is that of ongoing UTI's. Luckily I can recognise the start quite quickly and get some antibiotics straight away but I do worry about the long term effects of all these antibiotics. I was only offered the neobladder option due to my age (42 at surgery)but interestingly there was a lady on the ward who was about 75 and she was told she was too old for this option. Mind you I am in the UK and I think this is a relatively new surgical option over here. Good luck to your sister!
Regards,
Betsy Mae

Hi Barb,

I remember when I first found this website too how I finally felt supported in this battle. And how it made such a difference. As far as what I think your sister needs to hear right now facing the RC diversion ....

Be kind to yourself. At first you will likely think you have been hit by a Mack truck physically. There will be changes and adjustments and a new normal will come in time. Setbacks may happen - we have gone thru those too. Be sure to share all the little things that are a trouble - we likely have some tips to deal with it. They will want you to do alot of walking starting the day after the RC - do it and you will be doing yourself a huge favor as it will help your body adjust.
Mentally the surgery will challenge you. We all had periods of incontinence and it may feel like it wasn't worth it for a while. Again be kind to yourself. You will do better with time. Whenever I feel depressed over what I have been thru - I simply look at all the kids at St Judes who haven't had a chance. Then I am grateful for what modern medicine did for me. And B12 will become important for the mental state of mind - you need to get monthly shots after RC as your body can't get it from your food anymore.(Patricia can explain this better than I)
And most importantly - I think you are wise. I have seen many people who have not taken invasive bladder cancer seriously and have regretted it. You have decided to fight it with radical cysectomy and knowledgable decisions. You are doing it - and we are here to help:)
God Bless, Holly

Thank you all so much for your help with my sister. She has finally decided to go with the neo bladder and seems content with it. Now I'm asking for a little more help. Are there any WOMEN out there with the NEO BLADDER who can offer me words of encouragement that I can pass on to her? All of you kind people need to read my post on my thank you because it applies to how I feel about you all for your kindness. Love, Barbara:kiss: