Previous post re APR

Hi Caddie2011

Hope you are doing well. 

Can you please connect with @debras please. She is facing surgery, following chemo-radiation for anal cancer and could really do with some advise and support from someone who’s experienced similar.

Thanks.

Hi Caddie2011

I think it possible that you have had the same operation that I'm due to have very soon, if you have had this, please will you give me all the information you can. Thanks debra

Hi Debra,

I’ve just done a quick search of your posts & see that Ewok replied having gone through a similar surgery & has gone into the recovery etc., on their profile, was just wondering if it was this post/profile you were looking for? 

Nicola x

Hi

I’m not sure where you both are in your journey’s as its been a while since you last posted. Having read previous posts, I think you were both possibly facing surgery. I hope you are both okay?

Our colleague  is facing surgery following chemo-radiation. She is looking for advise and support from others who’ve found themselves in a similar situation.

If you are able, can you please connect with her.

Many thanks,

Sarah.

Hi Debra

I did indeed have an APR in December 2017. I’d initially been diagnosed with anal cancer in October 2015 (T2 N1) and had chemo radiation in November/December 2015.  The first post treatment scans showed that the tumour  had gone and everything seemed fine until September 2017 when the consultant noticed something in an examination.  Biopsies and scans followed and it was confirmed that it back.  When the consultant told me that the only option was the APR I was distraught and pleaded for more radiotherapy but was told that that could only be considered palliative which certainly wasn’t an option as far as I was concerned!

the thought of that was enough to make me change my mindset and decide that having the stoma was way better than the alternative and that I was just going to make the most of it.  Although the thought of looking after and managing it potentially for years was horrible, i decided that the opportunity to have those years when I otherwise might not was a small price to pay. 

The nurse specialist and subsequently the stoma nurse were fantastic in explaining everything to me and planning where tonsite the stoma so that I’d still be able to wear skinny jeans.  And also in explaining about irrigation (whereby you flush out your system using a pump on a regular basis - I know sounds gross but you get used to it! ) which gives much more of an element of control. Can explain more about that another time if you like but I find it really liberating. 

My operation to create the stoma was done by key hole surgery with the removal of the rectum done by open surgery.   Sorry, I can’t at the moment read back to your earlier posts as to whether you’re having any additional surgery but I didn’t have anything else removed.

I was in the high dependency unit for the first couple of days with intravenous pain meds (fentanyl I think) which I could administer myself for the first 24 hours or so.  Mostly it did the trick but sneezing is not a good idea! The physiotherapists will show you a safe way to do this but it still hurts.  Only water was allowed to start with but even that I found hard to keep down (which also was a source of pain when that happened!).  The stoma won’t be active for a few days at least.  The physios come quite quickly to get you moving, out of bed and taking a little walk.  That in itself wasn’t too bad except my BP kept crashing and I fainted at least once.  But that’s something I’m prone to.  

Was out of HDU and onto the general surgery ward within 48 hours and had the catheter out quite soon after arriving on the ward which really helps with comfort.  They continue with walking practice and using the stairs. And making you sit in a chair! I had a “valley” cushion from the stoma nurse - inflatable sides and a gap in the middle.  I continued to use this after I got home for several months.

I was home within 5 days. They won’t let you go until the aromas is active and you can change the back yourself.  I’m sure your stoma nurse will also be fab and it’s not difficult. But daunting at first though.

The immediate post surgery recovery does take a while but little by little you get stronger.  I managed a day trip to France six weeks after the surgery.  The very lovely lunch  did get my stoma going though! 

i was back at work 4 months after the surgery and manage commuting and all quite OK.

hope that’s useful.  I could probably write for hours on the subject! I’ve responded to your friend request so feel free to ask me anything else that way or by replying to this post.

In the early days it’s so hard to see this as doable but it really is.  I couldn’t believe  I’d ever cope but my husband and I have been to India on holiday since the op which I thought would never happen.

Caroline

x

Hi Debra,

I'm still around if you want to pm me. This is huge but you will be amazed at what you and your body can deal with. Stay positive, think positive, be positive, live positive and you’ll be fine.

Hi Ewok

I'm not quite sure what to actually ask. I wasnt scared when I was diagnosed with cancer, but I'm very nervous about this OP, it's a long anaesthetic and I was told at my pre op that I will go to hdu and I will have to lay on my side for the first 48 hrs. Sorry to ramble on, but the not being able to sit for ages makes me anxious and wondering about pain.

I watched a video  about this OP, but viewing this was quite cold and i felt very remote, so I'd be very grateful if you could fill me in.

Did you have the vram flap as well? Thank you. Xxxx

Hi @debras,

I didn’t have the flap but the surgeon did mention this as a possibility if I’d gone down the radiochemo route. That’s one bit of bad  luck I was spared and I’m sorry you haven’t been quite as lucky. So I can’t comment on that any further. What I can say though when I woke up I wasn’t in any pain. The anaesthetist said he’d inject a pain killer into my spine. The pain management team make a visit post op and made sure things were ok and I was as comfortable as possible.  Side lying is normal for this procedure and is ok ... getting back to sitting varies from person to person. 

I hope that helps.. Ive sent you a PM too. 

Take care, 

Hi Nikki, yes it was the Ewok post. Thank you so much.