Just discovered your post, I have discussions on McMillan and bowelcancer uk sites.
I was diagnosed with recurred colorectal cancer last December and underwent a total pelvic exenteration in January. So my colon, rectum, prostate and bladder were all removed. My tackle is still intact, but shrivelled and useless! It's a big operation, mine was 11 hours. It takes time to recover from the anaesthesia and in my case it was over a week before I could walk. After 3 weeks in hospital I'm now at home and have been recovering for 3 months. I have now started chemo and that will finish early September, then I hope I can get on with living again.
To be honest, stoma management has been relatively straightforward and the biggest problem I have is that during surgery my sciatic nerve was damaged because the tumour was wrapped around it. So my right leg and foot are permanently numb and in pain. The damage is not permanent so I should recover, but I have to walk with a stick and still can't drive. Physio is helping.
Anyway, hope you're doing ok, remember this is a curative operation and you're in the hands of experts.
I was diagnosed with recurrent rectal cancer in January and my tumor was in my pelvis and was wrapped around my sciatic nerve also. I had a total pelvic exenteration and have two permanent stomas. I had my surgery in Southampton on the 6th May and I am just starting to get back to some sort of normality. I am having physio and able to walk without the crutches at times, but use one crutch when I am tired. I have just started driving again and getting out and about a lot more, it is getting easier and I anticipate a few more months of recovery at least. It was a tough operation to get through and mine was complicated and lasted 20 hours. 9 weeks ago, I woke up and thought life would never be the same again, but I have improved week on week and my options on life were not good without this operation. I see oncology in a couple of weeks time, to see what happens next.
20 hour op?! I thought 11.5 was bad, I felt like I'd been hit by a bus when I woke up...Seems like you're getting on well with your recovery, I'm midway through a 'mopping up' course of chemo which has set me back in a big way, especially as it affects the nerve endings. So I still need a stick to walk, but im not having any more physio until chemo ends and I've recovered from the side effects. All the best
Yes 20 hours, my poor husband snd daughters, it must have been the longest day for them. I also felt like I had been hit by a bus, but was glad to see the lights on the ceiling when I woke up. I have never been so scared in my life going into an operation. They tried to save my bladder for several hours and then decided it was too near the tumor and they had to get through lots of scar tissue from previous operations as I have had a few! I suspect that I will need chemo and that worries me about the nerve endings as I suffered with that before last time I had chemo. Glad to hear that you are nearly through yours and hopefully the nerves will get better with time for you. I am dreading going through it again, but I have 2 daughters in their 20s and at 48, I want to give it my best shot, Cancer is winning at the moment after returning for the 2nd time, when I thought I had beaten it and had my stoma reversed last year, but I won't give up. All the best to you with your ongoing recovery and so nice to speak to someone who has been through similar, as I found it hard to find anyone who had until I discovered this chat.
How are you doing with your recovery? I know some time has passed since your last update. How are you find the dual stomas? Are things more settled now?
I found out on 5th January that my cervical cancer has unfortunately returned & due to previous radiation the only method with curative intent is total pelvic exenteration. I was first diagnosed at 24 & I am 29 now, I have an 11 year old in her first year of secondary school so I need to be around for her. Time to dig deep.
Any tips in regards to hospital & home recovery would be greatly appreciated.
Thank you very much for jumping in! Any advice would be great. I have a lot of questions!
How long was your recovery? What am I to expect when I wake up from surgery? How many wound sites & do they vary in healing time? Is there anything I can do to optimise my recovery? Is sex still possible? Are the dual stomas manageable to live a "normal" life.
Please only answer what you feel comfortable with, I am a whirlwind of questions & anxiety at the moment. Even your warm response has given me positivity. Thank you.
I’ll send you a friend request and if you accept we can chat by private message. Happy to answer all of your questions, but as it’s all quite personal I’d prefer to do it that way. But you can ask me anything at all. The surgery can have differences when being done for different cancers, but as we are both cervical ladies it should be the same if it’s a total exenteration. Oh, and I’m just coming up to 2 years out from my surgery if you want some more positivity! x
I’ll send you a friend request and if you accept we can chat by private message. Happy to answer all of your questions, but as it’s all quite personal I’d prefer to do it that way. But you can ask me anything at all. The surgery can have differences when being done for different cancers, but as we are both cervical ladies it should be the same if it’s a total exenteration. Oh, and I’m just coming up to 2 years out from my surgery if you want some more positivity! x
