Hi there 

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.

M

Hi there

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. 

Hope Bear

Hi,

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. 

Hi Hope Bear 

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. 
 

Wishing you all the best. 
 

Harley x 

Hi Harley

I know that you have asked Hope Bear your question but hope you don’t mind me jumping in. 

I’ve had a total pelvic exenteration for recurrent cervical cancer, so am happy to chat if you’d like to. x

Hi Minska

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.  
 

X 

Hi Harley

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

Hi Minska

That's great - I appreciate the private messages to discuss. Thank you for the positivity! X 

Hi Harley

Sorry to hear that you are having to go through a pelvic exenteration and that you have a young family to look after and how young you are too. I am 49 by the way. I was lucky enough that my two daughters were both in their twentys so were able to look after me instead. I am doing really well thank you. I wont lie, it hasnt been easy and I felt very low after my operation, the 6 lots of anaesthetic probably didnt help. I had my sciatic nerve cut, so my mobility at first was not good and my bags leaked constantly. I felt like my life was over and I was frustrated. Like you, I was a busy mum, so found it a hard operation to get through. I spent 3 and a half weeks in Southampton General, so take an ipad as you will be on your side a lot and only sitting in a chair for a few mins a day towards the end of your stay. Invest in a doughnut cushion for the car journey home and when going out and about. The incision for me was a piece of cake and never really hurt at all, it was my bottom that was sore with the stitches. If it hadnt been for my sciatic nerve being cut, I would have recovered a lot sooner, so if your operation doesnt involve that, hopefully you will have a quicker recovery than me. I didnt have any chemo afterwards or any treatment, just some physio to strengthen my leg.  I would invest in a couple of waterproof sheets for the bed as you will be changing the bed a lot until the stomas settle down. Now I have around 1 leak at night a month, if that. it just takes time for you to find the right bags, so get lots of samples from companies via your stoma nurse. Take all the help you can and talk to the clinical physcologist if offered. It really helps to talk to other people that are not your immediate family. Fast forward 8 months and I am back to normal as much as I can be, walking 5-6km with the dog and enjoying life. I was able to drive after 2 months, started going away for weekends at around 4 months and days to London at 5 months. I still now get quite tired, some days the bags are a complete pain, but you adapt. The bags also have advantages, I can drive long distances and connect to a night time bag and not have to stop, do the same at the cinema, wee anywhere in an emergency and you never have to sit on a dirty toilet again. I think you have to have a sense of humour and just try and get on with life. I had my scan results yesterday and no evidence of cancer in the pelvic area and just two lung nodules that are being monitored, so on the mend. You are very young and will recover from this operation and get your life back. I am happy for you to contact me for a chat anytime. I went under the name Hope Bear to start with, but I am called Debbie Meredith on social media sites and you will find me on Double Baggers, Bowel Cancer Support Group and Re.Build.Me. and general Facebook amd Instagram. I feel now that I dont want to hide the fact I had bowel cancer and want to help others with my positivity and to show that there is life after cancer. Take care and all the best with your operation Debbie x

Hi Debbie

I was chatting with Harley earlier as we have the same type of cancer, and there are differences in the surgery between different cancers. I have had rectum removal but I still have a rectal stump and therefore the issue of sitting is not the same as I had no external stitches and everything was done through open abdominal. I did not have to lie on my side, and although it wasn’t comfortable to sit initially, I did have to get out of bed and sit after the first few days. 

You sound as if you are doing incredibly well after your surgery and making a great recovery! Your post was really interesting and I can empathise with a lot of what you’ve said.I certainly agree that you need a sense of humour! xx

Hi Debbie 

Thank you for your detailed response, ot really is bringing me a lot of positivity to hear from ladies such as yourself & Minska that have gone through this and come out the other side. Truly inspirational. 

From your responses & my previous experience with abdominal surgery/ colostomy,  the bags seem to be a pain however manageable once things have settled down to a "new normal". I am liking the perks of the bags in certain scenarios! I did read a post of a older lady who loves attending festivals & not having to queue for the dirty toilets! 

Discomfort seems to run its course throughout recovery more so than the actual pain of the operation. I will be sure to remind myself that this is expected and it will end eventually. I completely understand the various negative emotions that you have experienced, I know these will also be present in my recovery and I will also come out the other end okay. 

Congratulations on your results yesterday - great news! I have my pre op booked for next week so I hope to find out more then. I also have my operation officially booked for February 28th. I will keep in touch & thank you again  for the response. 
 

Take care x 

Hi Debbie 

Thank you for your detailed response, ot really is bringing me a lot of positivity to hear from ladies such as yourself & Minska that have gone through this and come out the other side. Truly inspirational. 

From your responses & my previous experience with abdominal surgery/ colostomy,  the bags seem to be a pain however manageable once things have settled down to a "new normal". I am liking the perks of the bags in certain scenarios! I did read a post of a older lady who loves attending festivals & not having to queue for the dirty toilets! 

Discomfort seems to run its course throughout recovery more so than the actual pain of the operation. I will be sure to remind myself that this is expected and it will end eventually. I completely understand the various negative emotions that you have experienced, I know these will also be present in my recovery and I will also come out the other end okay. 

Congratulations on your results yesterday - great news! I have my pre op booked for next week so I hope to find out more then. I also have my operation officially booked for February 28th. I will keep in touch & thank you again  for the response. 
 

Take care x