Six months on from APR surgery

Hi Kirsty

Not at all - I bet esp with a young family as well must be mega busy! Good busy though as getting back to normal is so important isn’t it. 

So I don’t know yet when I’ll be having the surgery - still waiting on my scan results but your post & experience is so helpful. If I can have keyhole that would be a real plus I hadn’t thought about that & will make sure to ask plenty of questions about wound management.

I’m hoping I can have the flap reconstruction tbh - anything that can aid in recovery is a win for me but think the additional costs/resources of plastics & the colorectal nurse saying she doesn’t see it on the ward makes me think it won’t be offered unless absolutely necessary. Have considered requesting a referral/2nd opinion from The Christie if they say they won’t - so interesting to hear you were treated there - as they do it as standard I believe if you’ve had radiation.

Interesting to hear that even have a lot to learn still about it but really good they implemented more nurse training in the wound management side of things - this cancer is so kind of in its infancy still when compared to the likes of breast cancer etc where flap reconstruction is every patient’s right now (obviously the cosmetic aspect is different & far more psychologically necessary compared to our poor wee bum holes!) but from a quality of life perspective we’ve still got a long way to go. But then you think about the poor NHS & how bloody grateful we are to be getting this care in the first place & what an amazing job they truly do, that it’s all relative. 

Is prob bcos of other chronic conditions that restrict & impact my quality of life in general that the thought of another literal pain in the arse condition is really something I could do without! But it’s great to hear that over time you have healed & it doesn’t necessarily mean like you say that with good management & lying on your side etc it can’t be done. Read your tip about the power of protein as well which is all great info to put in the arsenal (omg there’s another one!) of coping tools. 

Will update on here when I know more & in the meantime hoping you get good news with your results

Thanks again

xxx

Hi Ninka 

Just thought I’d drop a note as I too am due to have APR surgery in the next few weeks; I saw my surgeon on Monday where he gave me more information.

I had chemo radiation last April/May and although it shrunk my tumour, there’s still some there. He said because the skin doesn’t heal well after chemo radiation, I will be having flap reconstruction so I think you’re right to get that second opinion. 

Hope your scans go well and you’re not waiting too long for a way forward.

Claire x

Hi Claire

I’d seen you say you’ve got to have this too & are a bit ahead of me so will be thinking of you going into it. 
That really is great that they’re doing the flap (even though I think it makes it a longer op but worth it). Do you mind me asking what hospital you’re at? No problem if you don’t - I’m at a Stoke but hearing it is done gives me the validation that I’m not wrong to want or request it so thankyou!

Aww thankyou hope the build up for you isn’t too scary & wishing you really well for when you go in & all the best with your recovery 

xx

Hi,

Thanks Ninka, although it’s not nice you’re facing this too, it’s comforting to know that someone is in a similar position, although I haven’t had my stoma yet so it will be all new. 
I’m being treated in Sheffield, so not a million miles away from you.

I’m feeling ok about mine at the moment, just want it over with, but I’m sure the scariness will ramp up as it gets closer! 

Claire xx

Hi Caire

It really does - thank god for this forum!

Re your hospital I meant to say if is a cancer hospital or particularly reknowned? As can understand it being more standard practice  in those. But I’m still going to ask for it. 

Stoma wise yes another adjustment on top of everything but as everyone contests on here the stoma nurses are brilliant andI guess you’ll have time to get to grips with it. They needed the bed when I had mine so was discharged the next day & pretty much told that I knew what I was doing when I really didn’t! But then the nurse visited me at home & that really helped.  Because of the stitches around it you’re kind of terrified of how to handle it to start with but it soon heals & every little step feels like a big win. 

Aaahh so much to think about! 

xx

Hi Ninka

I would highly recommend my surgeon at the Christie, when I spoke to him he made me feel the most confident that I was doing the right thing by going ahead with surgery and not bothering with the chemoradiotherapy first. He has something like 15 years experience with APR surgery and does one week operating and then one of research. He seems to be a very learned and well respected man! His name is Professor Renehan if you want to look him up? However I have to say all the surgeons for this type of cancer seemed excellent at the Christie. My only concern was the staffing on the ward after surgery but I think that is the case anywhere unfortunately…

It does seem odd that they won’t be doing the flap for you when Cavab24 says they will have it as standard, I believe it helps healing if you have already had radio to that area. Perhaps it’s worth investigating a second opinion just to put your mind at rest?

YES to protein and if they offer you the protein drinks definitely accept them. They are an acquired taste (gross to start but honestly I grew to kind of like them?!) also the hospital food is terrible so if you have someone who can bring protein rich food in then make sure they do that for you! I was so shocked at the state of the food, the tissue viability team kept emphasising the important of nutrition and then you should have seen the stuff they kept bringing, it was actually enough to make me feel sick and I am not a fussy eater at all…

Anyway I have sort of rambled a bit there but I really feel passionate about it after my experience and want to make sure nobody else has the same wound issues if at all possible!

Kirsty x

Hiya,

it’s Weston Park which is a cancer care and research hospital and my surgeon is Mr Skinner - I hear nothing but good things about him, thankfully!
The introduction to your stoma sounds a bit sketchy! But glad you have got to grips with it. I’ve done lots of research so hoping me and it can be great friends 

and thanks MrsKS for the tips on hospital food and protein - my daughter’s at catering college so I’ve tasked her with researching easily-sneakable-into-hospital foods! 

Claire x

Hi Kirsty 

Thank you so much for the recommendation to your surgeon - he sounds amazing- no wonder you felt in such good hands especially when faced with such a tough & terrifying decision. It’s brilliant to have a name & a personal recommendation so thankyou!!

It also helps me build my case. Basically my surgeon who did my stoma told me I’d be having APR after treatment & that MAY involve flap reconstruction. Having never heard of either I researched the daylights out of them lol & all of the literature points to them significantly improving the wound healing in terms of reduced infections, less wound breakdown, faster recovery, less use of resources, district nurse time etc & better quality of life for the patient against standard closing. And then learned that it’s pretty much standard procedure in lots of other cancers (like breast) which does make you wonder if all patients having APR should be having it regardless of if treated with radio first….in the US the Anal Cancer Foundation advise you to request it regardless but then obviously they’re sourcing their own surgeons etc as private but does make you think. 

Anyway….it was my colorectal nurse specialist who said my hospital don’t do Flaps (!) & that people do fine without. When I enquired about pain management she minimised this as well & said that most patients are discharged on just paracetamol & are fine ???  which I found really hard to believe & frankly pretty terrifying. How are the GP/ district nurses meant to know how to manage you then if hospital are discharging on only paracetamol?? Unless of course she was deliberately minimising it to make it all seem manageable & not scarey I don’t know.

So I’m torn as to who to believe as surely the surgeon trumps the colorectal nurse specialist? But then she’s on the wards & sees it first hand.

I thought  I’d ask my stoma nurse who’s community based & mainly sees post op APR patients & she didn’t even know what a Flap reconstruction was!! So I said it involves plastic surgery & maybe that’s why at Stoke there’s no resources for it bcos of budgets etc & she said “why do you want plastic surgery down there it’s not as if you see it all the time!!! I kid you not!! 

So I’ve been thinking is it me & am I just expecting too much & have read too much etc but was planning to enquire & if they say it’s not then get a second opinion or referral to The Christie. 

Your advice & input has really helped me solidify that this is what I’m going to do so thankyou. 

And apologies for the ranty ramble! Brilliant advice on the nutrition front & protein shakes.

And only sorry you had to go through such hell as well. I do think having flaps don’t cure all & that all similar post op problems are still there. But like you say if you can help even just one other person then at least what you went through wasn’t in vain.

God so sorry this is so long! Thanks again

xx

Hi Claire 

Aha so that’s prob why you’re being offered it which is great. And really reassuring you’re hearing only good things about your surgeon. 
Am sure you will soon grow to love your new body part in time!! That is pretty mad isn’t that you can get one? I’d love to ask for a tummy tuck as well while they’re at it but prob not best idea 
All the best 

xx

Hi Cavab24 

I was treated at Weston Park and Mr Skinner was my colorectal surgeon! I had 3 surgeons for my surgery at the Hallamshire, which was a different type to your surgery, but he did my colostomy and made a very good job of it! 

Sarah xx