Possibly having exteneration surgery

I was devastated at the time, but things worked out well for me in the end, so I’m glad ultimately that I had the exenteration.

Sarah xx

I'm sorry you have to wait for more answers. I was fortunate in a way. I'd already had a complete hysterectomy about 1 year before diagnosis. By the time of diagnosis my rectal tumor had invaded my vagina and bladder... in other words, every organ in my pelvis was compromised. I didn't know it at the time but the only surgical option that would ever be possible for me was a TPE. Once treatment shrunk the tumor sufficiently, I was good to go. Then I had to wait for surgery to be scheduled but I knew what I was getting. It gave me time to wrap my mind around it. 

I think it's terrible that someone who should be a support would speak to you like that. I'm glad they are out of your life now.

I'm fortunate to be able to work from home. I've been doing it for almost 8 years. It makes a huge difference. There's no way I could commute, I can't even drive right now. And, you may not be aware, but public transport is almost nonexistent inthe US outside of the big cities. I need frequent long breaks which is easy since my commute is 10 steps. Some days I even take a short nap in the middle of the day. It takes me 6 hours to get 4 hours of work done. Lol But I'm grateful to be able to work. It gives me something to focus on and helps me feel good. 

Hi Susan13 

It’s really good that you work from home and can pace yourself and rest if you need to. I live in a pretty small town, but we do have bus links and a train station. My commute used to involve a 10 minute walk to the station, 40 minute train ride, and then 10 minute walk at the other end. It meant an early start in the morning and made for quite a long day.

I did love my job, and worked with a great team, but I gave it up some years ago when my mum was in the later stages of her cancer treatment 400 miles away, and I needed to be able to go up and down the country. I don’t regret the fact that I had the freedom to do this and be there for her when she passed away-I never told her I had given up my job, as she would have not wanted that! 

Sarah xx

Hi, can I ask what your hospital experience was like please? I'm looking at something similar and I'm terrified of all the needles and drains and stuff  

I'm happy to tell you but please be aware that I'm in the US so hospital procedures may vary. Also don't let me scare you. I was near death at the time of my surgery. I could not walk without assistance and needed rest breaks to go more than a very short distance (like every 10 feet which is roughly 3 meters). It is possible that my recovery was more difficult than yours will be. 

My surgery went 8 hours, it was complicated by excessive scarring probably from prior surgeries and radiation therapy.  My surgery was a little easier because I'd already had a complete hysterectomy (uterus, ovaries, fallopian tube's, and cervix removed). 

I went to ICU (intensive care unit, 1 nurse for every 2 patients, I think you call it something different) for several days before being moved to a regular ward. I could not move well and needed help to roll on my side or get out of bed. The nurses and aides were simply wonderful. They helped me do whatever needed doing and never made me feel bad about asking for help. 

There were embarrassing accidents and I was very reluctant to "be a bother" but the staff always made me feel better and encouraged me to ask for what I need. 

Pain wasn't as bad as I expected. I was prescribed an opiod (hydrocodone) but quickly transitioned to acetaminophen (paracetamol to you) and mostly just used that. 

I spent roughly 3.5 weeks in the hospital before being transferred to inpatient rehab.  I think rehab is more common here than in the UK. I was in rehab for 2.5 weeks where I had 4 hours a day of physical and occupational therapy. They improved my strength, showed me better ways to do things like getting into and out of a car, we worked on taking steps and developed a plan for me to get in and out of my house safely. It made a huge difference. Even so, I went home in a wheelchair and needed the wheelchair chair for a long time before I transitioned to a walker. 

I'm now 7 months, almost 8 months post surgery. I'm walking better and work from home 4 hours a day. I have peripheral neuropathy from my chemo which continues to impair my balance but I've started using a walking stick instead of the walker most of the time. I'm hoping to be able to get out in the yard once the weather improves.  

I hope that answered your questions but please feel free to ask more. I tried to give you useful information without overwhelming you with too many details.  

You were so lucky to get so much rehab Susan-I think that would have made a huge difference to me but I got none here in the UK. 

We do have ICU in the UK, but we also have what’s called HDU-high dependency unit, which is where I spent 2 nights after surgery. ICU here has one nurse per patient and usually is for critically ill patients and HDU usually has 1 nurse for every 2 patients where you still have very close observation. 

I only spent 2 weeks in hospital, but I know others who spent longer-I did leave hospital in a wheelchair too as I couldn’t walk that far. 

Sarah xx