Hi all,
I’m new to the site, having completed chemo and radiotherapy over the past year with very limited improvement. Due to the size and position of my tumour my only remaining option is pelvic exenteration surgery that is scheduled for next Monday. Having met with my colorectal surgeon and plastic surgeon yesterday I am even more terrified than I was.
Has anyone been through this surgery? How did it go? How long were you in hospital? I have seen guidance from the Royal Marsden that suggests normal hospital stay is 14 -21 days, I have been told 10 days and concerned that I have no medical support once home, I am 2 1/2 hours from the hospital, so not easy to get back for any problems.
Appreciate any tips, what to expect and potential issues to help me feel more informed and in control.
Many thanks
Carolyn
Hi Caz123
Thanks for linking me in court
I had a total pelvic exenteration almost 4 years ago for cervical cancer, so lost my bladder too, but hope I can help with any questions or fears you have, and it IS a scary thought!
I was in hospital for 13 nights, with the first 2 being in high dependency. It’s hard really to imagine in advance just how big this surgery is..so I tried to focus on the outcome rather than the process. I am 1.5 hours from my hospital, but in the 4 years since surgery I’ve never had to go back with any issues.
I didn’t have plastics involved as everything for me was removed abdominally, and I didn’t want vaginal reconstruction, so my rectum was removed through my abdomen and everything looks exactly the same for me on the outside.
This surgery is exhausting-you can expect to be very weak afterwards and you need to take it really easy. I had minor wound infections once home, treated with antibiotics and occasionally visits from the district nurse. You will have a stoma nurse visit at home too. Recovery took a long time, with ups and downs along the way, but you can have a good quality of life afterwards.
You are going to need help when you are discharged-have you got support at home? I literally needed help with everything-getting showered etc as I was so weak. I’d recommend a waterproof mattress cover in case of leaks, and puppy pads.
Pain relief was managed well in hospital and you will get more to take home with you. Sitting down was difficult…lying down was much easier in the first few weeks as I healed. I got up and walked round the house every day and into the garden, with the help of a zimmer. My legs were very weak after 2 weeks in hospital where I wasn’t moving about much.
I’m not sure what specific questions you might have, but I accepted your friend request so feel free to send a message if you want to. I set up a support group online 3 years ago which is private/secret and only for women who have had anterior, posterior or total exenteration surgery which I could give you details of by message if you wanted to join us there. I can only do that in a private message as I’m not allowed to put details in the group here. It’s an active group where we share a lot of advice and support.
You might also find it useful to join the Stoma group here in the community-
This is a big deal…it’s life changing but life saving and I’ve never regretted going for it. I hope the surgery goes smoothly next week…remember not to expect too much of yourself right afterwards as you’ll have a lot of healing to do. Please keep in touch and let us know how you get on.
Sarah xx
