Surgery to remove bladder, large intestine and the reproductive system after recurrent cancer

Good morning Bluebird77 i just wanted to wish you all the very best for your upcoming surgery, and send you a virtual hug :) i dont have any experience to share regarding the surgery you described but i know the amazing SarahH21 is likely to respond with really good advice and support. 

Hi Bluebird77 and welcome to our group.

I remember how scary it was to have my cervical cancer recur and to be told that this massive surgery would give me the best chance of being cured. It’s a lot to take in and come to terms with, so how are you feeling about it? Are you in the UK? Processes might differ in different countries so I can only speaks about the UK-my surgery was done in Sheffield. 

I had total pelvic exenteration surgery in March 2020, so I understand what you are about to face at the end of this month, but it’s not very common so there are not many of who have been through this. Have you had full discussions with your doctors already to prepare you in some way for what is to come, and met the surgeon or surgeons who will be doing the surgery?

Normally I would say to try and get yourself as fit as possible to prepare for this, but you don’t really have much time to do that. In terms of practical things, I found the following things very useful to have-a long full body pillow in bed to support you when you can lie on your side but also to support you sitting up. It is a very strange feeling to have everything removed from your pelvis. A waterproof sheet for the mattress-you can have leaks from the stoma bags, especially in the early days so this will help save your mattress. 

You could ask your doctors questions like these-how long will the surgery take, what pain relief will be provided, how long are you expected to be in hospital, what should your recovery look like, will there be any rehabilitation programme arranged for you afterwards. You could ask is its staples or stitches used for your would and how they will be removed, and at what stage. I had staples which removed by the district nurse at home on discharge. 

I don’t think anyone could have prepared me for how tired I was afterwards, even though I’d talked to ladies who had been through it. I was utterly exhausted and needed help with everything when I was discharged from hospital. I was very weak, and sometimes couldn’t even get up and have a shower so I had have sponge baths in bed. Keep everything scrupulously clean to try to avoid infection and use different towels only once to dry different areas of your body. Infections are very common afterwards, having 2 healing stomas close together and an abdominal wound. 

I don’t want to bombard you with too much information at a difficult time, and it’s hard to know what’s best to advise you as you haven’t given much information in your post. I hope you have good support at home as you will need this in the early days.

If you click on my name you can read my profile information where I give more specifics about the surgery and recovery. If you have specific questions and things you want to ask, please do that and I’ll be happy to try and help from my experience. 

I wish you the very best as you head for this massive and life changing surgery. It saved my life and I am considered cured, so I hope that’s a positive thought for you. I’ve never regretted it.

Sarah xx

Good morning Sarah. I am in Norfolk and l have not have a full discussion yet around the surgery except  a call l received from the reconstructive surgeon on how they have to find muscles in my legs to fill the gap that would be created. Thank you so much for the information. They confirmed yesterday that is is indeed cancer and they would want to move fast before it starts spreading again. 

I didn’t have surgery to reconstruct my vagina, so can’t advise on that-it’s not something I wanted as it would have increased the number of surgeons involved for me, and the length of my operation. But everyone is different in how they’d feel about that. 

You are only potentially a couple of weeks from surgery, so I hope you’ll be called in to go through everything very soon-you might find your questions are answered in the general discussion. My cancer started to spread rapidly after my surgeon attempted to perform a radical hysterectomy when my cancer first recurred, so yes, time is of the essence normally.

Sarah xx 

Thank you. The surgeon are not reconstructing the vagina but they informed me they will remove the pelvic floor muscles too and they need to fill the gap created after removing the bladder, large intestines. I read through your profile again. Thank you.

Ah, I understand. Yes, removing the pelvic floor muscles will need a gap filling! I have had friends who’ve had muscles removed from their thigh to have this done. This is a huge thing to go through, so please take care and let me know if you need to chat about anything else. 

I didn’t have any counselling afterwards as it wasn’t offered but in hindsight it should have been, so I’d encourage you to ask if your hospital would have anything in place for this afterwards. 

Sarah xx