Petrified of APR

Not sure what op you are having.I had a total colectomy in 2019.if you click on my name you can see a short history and how I got on.

You can get through this.take it one step at a time

All the best and do ask any questions

Kath

Thanks for your reply Kath

I don’t actually know what the name of the op is either, , it was a telephone call, and I think I just shut down when I heard what the surgeon said they were going to remove during the op, and that I would have a permanent colostomy , still trying to get my head around it all, hard to take in when I have no pain and very little side effects from my tumour 

I hope your doing ok 

take care

Stomas really arnt the end of the world.once you get it sorted with the right sized bags etc it becomes second nature and doesnt stop you doing anything you did before.I found the stoma nurse from the bag suppliers to be particularly helpful at.the begining.you can ask them anything at all and they can sort it.

Thanks for asking how Im doing.great thanks 

Kath

Hi Nicon1,

I went through this exactly same situation you are facing. I am now three years since my APR op and four years since my treatment (radio/chemo).

My cancer did not shrink either.

But life is good with a stoma.

It makes me quite emotional to think of you sitting there worrying. Worry is of course natural, but if you could put yourself in my mind now you'd soon realise there is no need to worry.

We hear people talk about positivity, and I now understand why. It's the one thing I got right in my treatment - staying positive.

If you'd like to chat I'd be very happy to help you understand more about what is to come, how I've found it, what life is like now.

But please take my word for it, I know all the things you are worried about and when I think back I needn't have worried.

Sure, if we could choose we wouldn't ask for an APR op lol but it hasn't stopped me doing anything and in fact I've done more post-surgery than I ever did in my previous life.

Get in touch,

Cheers

Thanks for these words. Means a lot, glad to hear you are doing well having gone through all this crap too

ive been really positive up to this point, got through my treatment with a positive outlook, thinking I’m young and strong so I can beat it, will take the side effects and carry on 

It’s just the reality of never being the same again has hit me , my own fault for being naive about what was actually going to happen in my operation, 

thanks for messaging 

Nah naivety suggests fault or blame. Nowt to feel guilty about. In fact I chose ignorance as part of my treatment plan haha I’m serious. I told the surgeon only tell me what I need to know!! He congratulated me lol. So I was naive by design through all my treatment and op.

How I dealt with it too is to accept every emotion. Don’t try and not feel bad that you won’t be the same after your op. It’s true, you won’t. I felt a fraud to call myself a man. Pretty tough words to hear from myself. I used to run and ride motorbikes and after my op decided I couldn’t do those things because I am fake. I’m not this runner or biker. I’m not what people think. But what you have to do is adjust to the new you. Corny stuff. But true: You have to get used to your new identity. And sure enough I now run and got back into my biking, I have three now lol.

You absolutely will go through some rough times but force yourself to recognise that if you’re feeling down about it, have a little secret thought in the back of your head that’s telling you this is a good sign. Bexause it means you’re on the road to recovery. If you’re not feeling down then those feelings are yet to come. Let them in, I needed to be broken to fix myself.

Every single thing you’ll go through from now onwards, everyone that’s had an APR has gone through. So another corny line: know you’re not alone. What you feel is normal.

Just try and have something from the current you, like my motorbiking, to re-find. Something you identify with. A hobby or a bucket list item. I needed that to find myself again.

But from now on take it one day at a time. Don’t be in a rush. Physical recovery is pretty quick and give yourself time afterwards to get used to it mentally. I’d say I am still and will always be recovering mentally to some degree. You spend 40 years with an a*** you can’t expect to get used to a stoma in 4 weeks. And that’s ok. I am happy and healthy. But you’ve got to go easy on yourself. You’ll do just fine because you kinda already showed yourself that you’ll cope because you posted here and recognising that you need help is proof you know how to seek it.

Enough ranting from me lol.

Go and own your stoma, it’s a great story you’ll have and like my kids say one day people will choose a stoma because it’s a lot more convenient that an a*** hole 

When is your op?

Really appreciate this reply 

I do try to have a similar mind set with things.
I guess it is what it is, I know it’s going to be a long road to normality , but will definitely try my best to focus on the positives, and I’m sure I will revisit this message a lot along the way 

Thank you, this has really helped 

im not sure when Op is yet (poss Feb) , but they still want to have another meeting to see if I should do 3 months of chemo first (but said even if that shrinks it they will still do the op, so not sure they will bother )♀️