Hello all

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I am new to the idea of an online community. I have bladder cancer, also 20 years of M.E. I am terrified of all the things to be done to me, including removal of a kidney and possibly the bladder. Finding it hard to come to terms with the idea of losing 2 organs. How does one do that? Hoping to find some reassurance by connecting with others in the same boat. 

  • Hi  and welcome to the group. I see from your other post you have had a TURBT and waiting for a second. The follow up TURBT is usually a mop up job to make sure nothing was missed and gives them a more accurate diagnosis. Early days to be talking about bladder removal. Try and take things one step at a time. Lots of experience here so usually someone with an answer. Best wishes.

    Best wishes to All,   rily.

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  • Thank you rily! I don’t fancy either option after bladder removal but if i must i must. Yes it may not come to that. 

  • Hi Flounder,Welcome to this friendly group.I hope you will find some good advice and support here.Best wishes Jane

  • Hello winkers60, thanks so much for your message, i feel so much better already for having joined this community, ive been so touched that people have responded staright away and made me feel connected. I have already learnt a lot more about bladder cancer treatment just from today’s reading of peoples’ posts, and feel maybe i will be able to get back to feeling ok about it all. You seem to be coping ok so i will draw hope from that. 

  • I’m so glad you are feeling better for having joined.Do you have supportive family and friends ? 

  • Thank you winkers60. I do have 3 local pairs of lovely friends who gave me lifts to hospital last time i had the TURBT, and brought me meals afterwards, which was amazing, especially as i have such a list of foods i can’t have. I have a dear sister who keeps in daily touch long distance and is keen to take me back to her house for a bit if it comes to needing more care- even offering to have the 2 cats too. So yes, i feel very loved! 

  • Oh that is good to hear.Your friends sound wonderful.Love and best wishes Jane