APR surgery

Hi Jeenie2001 im so sorry you are having to go through this, i have no personal experience of apr and only know what ive read on here. Hopefully someone who has been through it will pick up on your post. Dont worry about crying, i cried, the poor medical person would say hello and i just cried in their face. I hope all goes well on the 19th. Sending hugs. Xxx

Thanks everyone for your support and messages.

I have spoken to my specialist nurse and she confirmed that the operation will in fact probably take 12-15 hours. I have never heard of that before but in fact it's true. The reconstruction takes such a long time. 

Thanks again for your support, I will now have to tell my sons that they are in for a long wait til they hear I'm out of surgery.  

Sending hugs

..xxxx

Hi Jeenie2001 , I’m really sorry to hear that you’re having to go through with this surgery but as Irene has said I’m sure your surgeon is confident that you’re strong enough to withstand it, if they were in any doubt they’d not be going ahead. As you’ve said you’ll be having the APR surgery but then there’ll be the vaginal reconstruction which will take time too. 

We have a few members here that have been through the APR surgery & have recovered well & are back living their lives, hopefully someone will see your post & be able to offer you a bit of reassurance. 

Just know we’re here to support you however we can. 

Nicola 

Just wanted to say hello Jeenie2001 and reassure you that this surgery is complex, and long, but very doable.

I was in hospital having biopsies two weeks ago, as it's not clear if my treatment has been totally successful. My roommate was a lovely lady in her 70's who had undergone APR surgery.

We share the same surgeon, so we chatted about our treatments. She was in ICU for 3 days, wired up and on pain meds, then moved to the general ward. She was drinking, eating small amounts and taking small walks. Catheter had been removed and she was able to go to the toilet. She also had a stoma fitted during the surgery. Lots of antibiotics as infection can be high for this type of surgery. She did have a difficult night with pain but they managed to get that under control. 

She had a few other medical problems and I was amazed at how well she was recovering. They kept her in hospital for 10 days as she lived 3 hours from the hospital. The surgery was done by robot, so recovery time was faster.

Also one of our group posted a few months ago, the post was titled ELAPE. This surgery is a little more complex as it removes the levater muscles, but her tumour had also invaded her virgina. She was making a fantastic recovery, surgery was a great success and she was planning a return to work.

Sending lots of strength and positive thoughts for your operation on the 19th.

Ally xxx

Hi Ally

Thanks for your response, that has really reassured me. I've been thinking about it overnight and have realised that it is not as bigga deal as I was thinking!  I'll be asleep all through it and my specialist nurse reassured me that they wouldn't put me through it if they thought I wouldn't make it. 

Thanks everyone  you've all been so kind xxxx

Hello Jeenie

The surgeons are amazing who do these operations and the aftercare will be top class. You are in safe hands I am sure.

In anticipation for surgery I have really ,'ramped up' my protein intake. The faster your body can heal, less chance of infections. 

You have come through so much already Jeenie, stay confident that you will come through this and regain your 'new' normal.

Ally xx

Hi Jeenie2001 

I’m sorry I don’t have exactly the same kind of experience to share, but I’ve had a total pelvic exenteration, which involved losing my bowel, bladder and vagina amongst other things so this is a huge surgery you’ll be having. 

I chose not to have vaginal reconstruction myself, so my surgery time was shorter than yours but it’s the reconstruction will take a lot of the time. I had 3 surgeons working on me, and it would have been 4 if plastic surgery had been involved. I was definitely scared of being under anaesthetic for so long so I completely understand your shock at the surgery time! I remember having my epidural put in during the morning just prior to the general anaesthesia, and next thing I knew I was waking up in the evening. 

It’s a very long day for your family to wait, but my partner was allowed to see me in the high dependency unit, just briefly, after 8pm. I have to say I wasn’t really “with it” at that point and was very groggy, but they just wanted to see I had come through it. I wasn’t making a lot of sense, but at least the could see me and hold my hand! 

It’s very true that they would not put you through this if you weren’t able to cope, so you CAN get through surgery as big as this. 

Sarah xx

Thanks for this SarahH21 , I just wanted to say as much as I can empathise with what Jeenie is facing with her surgery it’s not quite the same as hearing from someone that has been through something similar so I really appreciate you responding. 

Thanks again

Nicola

Hi Nicola

I know the surgery is a bit different, but there are similarities…so if I see posts in the forum that have similarities to what I had done, I’ll try and pitch in with anything I might be able to help with.

I was lucky in that I was able to physically meet up with some ladies in Yorkshire for lunch who’d had surgery, and what was really helpful was to see how well they were doing. 

I’d like to give others some hope too about getting through something so big. I wasn’t sure I could at times, and I really wanted people to say that they had, and were out the other side.

Now I’m the person who has come out the other side and am considered cured by my oncologist after nearly 6 years. I hope that it can encourage people going through tough times to always keep hope alive.

Sarah xx

You’re amazing Sarah, for going through all that you have & for sharing your experience with others & offering encouragement & hope to those that in their darker moments think there’s little to none. 

I remember supporting a lady here in my early days as a CC & she was being treated at the same hospital where I’d received my treatment but she’d had to travel & stay over in a hotel Monday-Friday whilst she had the treatment then went home on weekends which had to be tough so I offered to meet up with her & her husband for coffee at the hospital one day after her appointment & they were so grateful to see me doing so well etc., as it gave them hope after  the awful things they’d heard about the after effects of the treatment so I can appreciate how you must have felt meeting with others that had been through something as major as what you were facing. 

Thanks again for offering your support. 

Nicola