Next step

Hi Poohbear I am sorry you are having this worry. Do you have your specialist nurses number to give her a call and see if she can help. Until you know what is happening your imagination can run a bit wild. I had surgery before my treatment and yes it was uncomfortable but with pain killers it was bearable. 

Thanks for replying, just had a call off hubby surgeon is ringing at 3 to discuss 

will update when I know more 

Hi Poohbear, I hope you get some clarity from the call with your surgeon, let us know how you get on if you’re up to it. Sending lots of positive thoughts your way.

Nicola 

Thanks will update soon x 

Ok so update, 

im going into Christie’s on the 16th for an operation, I will be having a stoma permanent and also a skin graft 

I will be in hospital around 2 weeks 

yes I am terrified but if it keeps me here then that’s all that matters 

Hi again Poohbear,

Thanks for the update & I’m sorry you’re facing this surgery but as you say if it’s what needs doing we pull up our big girl pants & get on with it don’t we? Having said that your feelings surrounding what’s going on at the moment are completely understandable. Is your surgeon planning on removing what remains of your tumour? 

Thinking of you.

Nicola 

Hi , so the surgery is an ‘ abdominal perineal resection’ which basically means they are going to remove all my rectum and some of the skin around it outside hence the stoma and skin graft . It will be 6 hours in theatre. 
 This means that it will all be gone . X

Hi Poohbear

Your surgeon is acting with amazing speed, so that’s a positive. I haven’t had the APR surgery you will have, but I have had my rectum removed and live now with a permanent colostomy, and a permanent urostomy for good measure as my bladder also had to go. 

There are a lot of people in the bowel group who have had this surgery done, so you could have a look in there for further information and ask any questions about the operation, and there is also a separate stoma support group with lots of advice where you can ask questions too.

As I haven’t had the same surgery, I didn’t require a skin graft-when my rectum was removed it was sewn up from the inside leaving a charmingly named “rectal stump”. My operation was a total pelvic exenteration, so I also lost my vagina amongst many other things, but here I am more than 2.5 years later, living a good life. 

The fear can overwhelm you if you let it, so I focused on the end result of being rid of the cancer rather than the procedure itself, and I had very clear margins with the cancer all successfully removed. I was in surgery around 6 hours and in hospital for 2 weeks afterwards. The thought itself of what will happen is awful, but the reality when you heal and recover is so worth it.

I’m happy to help with any questions if I can based on my own experience, and the other groups I mentioned are also great sources of support. I wish you all the very best with your surgery.

Sarah xx

Thank you xx

Ah apologies Poohbear I didn’t realise it was APR surgery you were facing. I agree with SarahH21 that it’s good that your surgeon is so on the ball & getting things done as soon as possible. Sarah is also the perfect example that life goes on following such major surgery & has provided you with some great information on other groups that you may find useful including the Bowel (colon and rectal) cancer forum & the Ileostomy, colostomy and stoma support where you may get more specific information & support if you need it. 

It’s not easy I know as it’s yet another thing you’re facing but try & stay positive, I’ve got everything crossed that this will see you cancer free. Is your appointment with your oncologist still going ahead next week?

You're in my thoughts.

Nicola