Total Pelvic Exenteration

Oh sweetie, what terrible news right before Christmas! 

My rectal cancer lead to a TPE. This surgery is not common but there's some others who had TPEs who will probably speak up soon enough. 

The surgery is very difficult. I'm glad they warned you of that because I was not prepared for how hard it would be. It is a shock to the body and recovery is slow. My surgery was 4.5 months ago and I am not fully recovered yet. He will be very weak when he wakes up. I could not get out of bed without assistance. I was appalled. It comes back over time. My best advice is 

1) before surgery, build up his system with healthy food, emphasize protein. 

2) do not rush the recovery. It's natural to get impatient but the surgery really requires plenty of rest to recover fully. 

However, it is not all doom and gloom. I have more energy now than I've had in the last year and a half. You would be amazed at how much that pesky tumor is taking out of him. Some of us who've had this surgery were "cured". I'm on surveillance now. 

You didn't ask this question but do not worry about the 2 stomas. He is about to join an elite club, only the best of the best get not 1 but 2 stomas.  There's a bit of learning to do when he first gets them but you'll find it becomes easy very quickly. 

I'm sure someone with young kids will chime in since I was quite a bit older when I got sick. But I've found kids to be remarkably resilient. As long as you are honest about daddy being sick and are available to answer questions and maintain routines as much as possible,  they will be fine. They may even look back on this in the future as a good time because their father was able to spend more time with them. 

Feel free to write me anytime with any questions.  I am happy to talk. 

Try to relax and enjoy Christmas as much as possible. Sending you and your husband a large virtual hug. 

Hi Scientist44 

Great reply from Susan13 . This thread might also be a worthwhile read .

 Expectations when going home after total pelvic exenteration You have done so well but completely understandable you are exhausted . I will be thinking of you tomorrow and hope you can get some relief  even for a few hours .

Take care ,

Court 

Hi Scientist44 

You've had some great advice from Susan already, but if I can add something too it would be to say that I had a total TPE in March 2020 and have no issues with anything connected to my surgery since then. 

Life can be very good after this surgery, and living with 2 stomas is something you soon become accustomed to managing. I focused on having a positive outcome from surgery, rather than the process to get there as the thought of such massive surgery can be overwhelming. Recovery is hard, there’s no sugar coating that I’m afraid, but for me it was definitely worth it!

Sarah xx

I had emergency operation to remove blockage in my bowel - different operation I know but I have an 8 year old. Because it was such a shock I told him I’d swallowed some Lego and they had to remove it at first. As times gone on I’ve told him what was wrong but he said he was too young to know about cancer. I would advise keep everything as normal as possible for the kids. They live in the moment. We tried as much as possible for our son to be picked up normal time from school etc to keep it as normal as can be. The ward wouldn’t let him in but thankfully the macmillan nurse had a word and booked the garden for us so we could see each other- which was wonderful and helped my recovery and my son needed to see his mum. Best of luck. 

Thanks to everyone who has posted. All the info and advice is very helpful and very much appreciated. I know the road forward is going to be tough at times but it great to hear you seeming so positive despite everything you’ve all been through.

What should we expect from the recovery? I know it will be a slow process and it may not be the same for everyone but what were you able to do by what points? How long until he will be able to leave the house? How long before he can manage the 5 minute walk to do school drop off? Is it mostly physical limitations later on in the recovery process or does general exhaustion and weakness mean that he will be mentally less able too? I’m wondering about when he might expect to be able to go back to work maybe part time and working from home? I know it will help him to feel like he has purpose beyond just the recovery but I also don’t want him to push himself too far. We missed out on a family holiday last summer because of his chemo and I feel like everyone would benefit from time away from home. But would a family holiday in August (6 month post-op) be realistic? We normally drive down to France and camp - if we swapped the tent for a static caravan would that be even worth considering?

Sorry for the barrage of questions! Just trying to get my head around what next year might look like. In the meantime trying to focus on family time while things are relatively normal. That and helping my husband regain some of the weight he’s lost and get back into doing some exercise. Both of which at least seem more feasible now he’s starting to recover from the chemo.

Thanks again for taking the time to post it means a lot. Hope everyone has a good Christmas. 

No one can answer most of these questions. Individual experiences vary so much. Keep your plans flexible and adapt them as needed. Don't plan too far ahead until you see how things are going for him. 

I am returning to work in Jan (part-time and working from home). This is 5 months after my surgery. 

Your husband should walk a lot after hus surgery. It's one way to rebuild his strength.  You'll need to judge his stamina and make the call when he can do the 5 min walk to school. I'd set that as an early goal since it will benefit you both. But, once again don't rush it. It was probably 3-4 months for me but your husband is younger and may recover faster. (I also had surgical complications which have slowed me down).

He will need to be most careful with tasks that require bending and lifting. There a real risk of injury and developing hernias. 

I'd say he should be ready to leave home and go on a trip by Aug but you may need to adapt the plans. In my mind camping involves a lot of bending, sitting on logs and low stools which will stress the abdominal muscles. 

Plan around his limitations rather than scrap the idea. And you will have a much better idea what those limitations are after he has been home and healing a while. 

I hope you you had a great Christmas. 

Thank you that’s really helpful. I know everyone is different and complications post-surgery are fairly common and can change the trajectory a lot. I find the unknown the scariest part so even knowing what it could look like is helpful.

Sorry for all the questions but one more thing I wanted to ask is when he gets home will he need someone around 24/7? And by what point did you feel comfortable being on your own at home 9-5? I will be able to take a little time off but I don’t have that much annual leave and I’m going to need to go back to work so I’m wondering if we need to have someone come stay with us. Unfortunately family are all quite a way away but I’m sure we could have people come stay for a few days at a time in shifts if needed.

Hi Scientist44 

I had no complications post surgery, other than a small wound infection, but I definitely needed my partner around 24/7 on discharge. I was extremely weak, and absolutely exhausted so I needed help with everything initially. I was vomiting a lot, and needed lots of bedding changes due to bags leaking and I couldn’t have done this alone. I think you can’t underestimate the level of exhaustion after this surgery-I needed help even to have a shower. 

I had my surgery just as covid started, so I was lucky in that my partner was able to work from home for several months during lockdown, so I don’t know how long it would have taken for me to feel ok alone all day. By the time they went back to work in the office I was well able to cope alone all day and would have been able to for quite some time before that.

But I agree with Susan in that everyone is different in their situations and recovery. I do know quite a number of people who have had this surgery as I run a support group online specifically for this surgery and no-one has found recovery easy. You need to be able to be flexible and take things a day at a time. 

Sarah xx

Thanks for your reply. It is so helpful hearing from people who have actually been through all of this.

I don’t know how we are going to make it through this but I know we will find the strength from somewhere because we have to. The human body is a remarkable thing. 

The taking things one day at a time is something I really struggle with as a planner by nature but I’m trying hard to get into that mentality… fortunately my husband is better at staying in the here and now than me. I feel like this will be a mental battle for me and a physical one for him. I wish I could commit all my time to him during the long recovery process but with 2 young children at home and several PhD students at work that depend on me it’s tough… so I need to work out the logistics of how to make sure he has the support he needs.

I think you need to be prepared for recovery not being linear-he will have good days and bad days but don’t expect everything to be plain sailing from the start and from then on. I spoke to a number of people before my surgery and they warned me not to expect too much too soon-they were right! Every little improvement however small felt like a huge gain. 

I appreciate that you are by nature a planner, but I don’t think it is easy to plan things in the early days especially planning a holiday abroad so far in advance. It might be possible, although that’s a long drive to make..I think you need to see how his recovery goes before contemplating that kind of a trip. I couldn’t travel because of lockdown, so didn’t have that kind of decision to make, although I travel abroad regularly now-always by plane and hotel or villa based, and couldn’t have contemplated camping in a tent. Being abroad and managing 2 stomas is a challenge in itself. 

It’s tough mentally to go through this for both of you-and for me the mental challenges were as important as the physical-this is a huge change to anyone’s life.

Sarah xx