A blog about Rectal Cancer, and the roller-coaster it takes you on. No matter how sick you start to feel you just can't get off until it stops - one way or another - and in the meantime life goes on pretty much as normal.
So this is a blog both about rectal cancer and life going on as normally as possible... :-)
Please do feel free to leave comments, comments are great :-)
I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010.
Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..
Went for my appointment this morning for my post surgery check up and removal of the very annoying and uncomfortable hard nylon stitches in the rectal wound - only to find out that the surgeon feels that the wound hasn't healed enough yet and therefore they are staying in place for another week....that'll be five weeks then!
Although I did just want to relax and lay in a nice warm bath for ages tonight, I'm actually okay about them staying in place if it means I avoid further surgery.
If he removes them too soon he is convinced that the wound could break down and that would involve plastic surgery at a later date with prolonged wound packing in the meantime.
I can wait under those circumstances - I'm fairly desperate to avoid further surgery :-)
Sarah came with me for my hospital appointment today, met my surgeon and had a chat to him too.
He also asked me how I'm feeling about things and I told him I'm quite depressed - he said he would be concerned that I wasn't 'normal' if I wasn't slightly depressed about everything....(good to know I'm 'normal' even though I feel far from it...)
We had another chat about Chemo or not to Chemo - our favourite subject these days it seems.
I told him I'm happy to go to talk to the Oncologist (next Tuesday) about options but that I'm still leaning to the 'no chemo' direction at this point - however, I WILL talk through my options before I make my final, definite decision and it will be based on what's right for me after weighing everything up.
Something that made both me and Sarah really laugh during the appointment was when the nurse called me in and asked me to get up onto the bed so that the surgeon could come in and examine the wound.
So, removed my jeans - kept on my underwear for modesty until the last minute and laid on the bed. She covered me with some of that disposable paper stuff - then said 'Where is your wound?'......
I was so tempted to say 'Ummm.....here on my head, it's why I'm laying here with no jeans on'
When she left the room I told Sarah what I'd been thinking and we laughed so much that my Stoma actually hurt for a moment.......
Later on after the surgeon had finished examining the wound I asked him to send the nurse back in to redress it for me - she arrives, takes ages organising herself and her supplies, pokes around quite a lot for a while (luckily my bum is now completely numb) and then says (this is a classic funny line)....
'Are you able to control your poo?'.....
I replied very calmly and with no obvious sarcasm 'Wellllll, I don't actually have a bum anymore, so no, I can't really control it as such'
She pokes around some more and says 'Oh!...have you got a bag?'
I said 'I've got a permanent Stoma that I attach a bag to'....she says 'Okay, that's good'...
Funny how someone can be looking at a completely stitched up arse and not actually notice that it's not possible to use for normal bowel motions - and be a nurse - LOL :-))
Had fish n chips for lunch on the way back home - really nice place that serves way too much to finish and completely delicious.
I managed more than half - which is no small achievement when you see what you actually get served on a plate.
Last time we got a take away from there, Rab and I shared one portion between us for a lunch and it was plenty - so today, I ate loads!
Have decided that I'm going back onto my supplements from tomorrow. I had stopped them on the advice from the Enhanced Recovery nurse as she felt that the colon needed time to adjust but I discussed this with her again today and said that I feel I will improve faster if I feel I'm doing the right things with my immune system - she agreed that if I felt it was important then I should go ahead and restart.
She reminded me that there is no scientific evidence that what I'm taking would make any difference to my overall health - however if it makes me 'feel' better then go ahead.
I wanted to remind her that there is little scientific evidence to prove that adjuvant Chemo will give me a cancer free life, however everyone thinks I should do it regardless - but decided not to bother at this point....
So from tomorrow I'll restart my supplements and in a week or so I'll let you know if they are working, scientifically or not :-)
Other good stuff that has happened over the last few days was that on Sunday Rab and Djamel went out for a while and came back with a 6ft Christmas tree. When they got home Dj said....'Mummy, you are NOT decorating the tree this year, I am doing it myself and you can watch'....This is amazing because I do all the Christmas stuff normally, tree decorating, present wrapping/buying/choosing, food shopping, menu choices, cooking - this year I'm redundant and it's actually quite nice for a change.
Anyway, Dj decorated the whole tree by himself (I trained him well in past years obviously - lol) and the only help he had was with the lights - Rab helped him get the lights on evenly...the rest he did and when he'd finished I told him he'd done a great job.
His reply was a classic ...'Thanks mummy, I don't want you to think that when you're not around any more that we won't have a Christmas tree and we won't have Christmas - you can see I can do it now so when you're not here it'll be one less thing for you to worry about'
He's great - it would have been one of the things on my mind in the future - I can see that I would have left a list for Rab reminding him 'This is what you need to do for Christmas each year' ....obviously I don't need to now......
As Dj said, one less thing to worry about - it's all good if they can cope well :-))
Rab has been amazing - he's mastered the washing machine, got himself into a routine of washing whites and darks on different days, changing beds at the weekend, washing up, cooking, shopping, going to work, ironing, sorting out uniform for Dj, polishing shoes and all the other stuff that I used to do by myself..... He's gone from the man who sat waiting for things to happen, to making those things happen.
The Stoma nurses gave him a pat on the back the other day and said they could see he was being a star and really looking after me - he said 'It's only while Carole's sick because once she's well again I'm going back to normal'....:-) ))
Here's Dj's Christmas tree...before he decorated it...
Then after all his hard work.......
And traditionally, always the last thing on the tree is the Angel.
Rab used to lift Dj to put her in place every year - and it's always been Dj's 'job' - but this year he got himself a step ladder and said 'I don't actually think you can manage me any more, old man'.
He's so cheeky (but also right, I don't think Rab could manage to lift him for long any more)...:-)