cystectomy surgery

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Hi I joined this forum when I got diagnosed with bladder cancer the beginning of the year. I'm due to have cystectomy surgery on Thursday. I'm now getting very nervous and anxious about it. 

  • Hi Wilko, this forum is really good for supporting people that have had a cystectomy. I am sure someone will be along soon to offer you advice and their experience. I have not had a cystectomy , but wish you the very best of luck for thursday. Of course you are very anxious about it, its big surgery . You will be in my thoughts and prayers.
    You are among friends here that will hold you steady 

    Much love Angela x

  • Hi Wilko,It’s natural to feel nervous,is there anything in particular you are worried about ? A few of us have been through this surgery and can help to support and advise.Will you be having a stoma ? Jane 

  • I am sure you will be in good hands. It is major surgery, but I see the outcome of the surgery is often very good. Have not had it myself, but would do 100% if required.

  • Hi Wilko, understandably you will be very anxious about major surgery I too will be going through Radical Cystectomy this Wednesday. I’m trying very hard to be positive about it knowing that I’m going to be in the best possible hands of my consultant. The wonderful people on here are so helpful and supportive in answering any questions, offering advice with some very useful tips going through this procedure. 
    Wishing you all the very best for Thursday x

  • Hi winkers60, yes I'm having a stoma. I don't really know what I'm worried about. I've just got silly questions like am I going to feel as I need the toilet? I'm a NHS healthcare worker so I've worked with stomas so I'm hoping il cope with it. 

  • Thank you Wilco for being part of the NHS, with gratitude Leo

  • Hi Wilko,I’m sure you will cope well with the stoma.You won’t feel like you need the toilet with it but you will still get that sensation with the bowels.The important thing to think about with the stoma is that it will shrink down post op.While it’s changing in shape you will need to measure the stoma.That way you can cut the hole in the bag to the right size and avoid leaks.Once the stoma shape has settled you can order pre cut bags if you prefer.Apologies if you know all this already.The stoma nurses will help in hospital.I was amazed at how quickly you can get used to having one.I hope you have got someone to help out at home when you are discharged ? You probably will need someone on hand for the first few days at least.I could wash and dress myself but my sister stayed and fetched food and drink and helped me upstairs as I was weak and wobbly.Ask any questions here as there is usually someone who can help.Jane x

  • I will second that x

    Much love Angela x

  • I recall my pre-op assessment before my RC, when the nurse asked if I had any questions & I couldn't think of any. I said to the nurse that I was sure there'd be some surprises, and she said what sort? As if I could know! It's only natural that when it's all such an unknown, we feel anxious. 

    In my case I had neo, so a bit different. Immediately post op I was so weak & tired - probably forgot all I'd been told anyway. You'll have plenty of recovery time to get used to your new plumbing & integrate it into your daily life. I'm now 12 years post op and can hardly remember being any different. Hope all goes well for you.

  • Hi Angelica23, thankyou wishing you all the best for Wednesday. X