- 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..
Sunday, 5 December 2010
I wanted to do a Positive Post .....
but it's hard.......:-(
I'm not finding too much to feel all that positive about as yet - but as everyone keeps telling me, it's early days yet.
So how are things then?
Things are pretty much the same really. I'm still quite tired but not as exhausted as when I first got out of hospital. I have limited energy and moving around is getting slightly easier. Going up and down stairs is now relatively simple - as long as I remember to support my stomach when doing this.
I'm taking no pain relief now during the day as the wound is now more a discomfort than pain issue.
District nurse has been again today and confirmed that there appears to be no infection whatsoever around the rectal wound - which means all should be okay to remove the stitches on Wednesday. Yay! At last I'll be able to have a long soak in the bath - that's something to look forward to.
Eating is still a battle, not so much because I have no appetite now but more because just about everything makes my stomach feel unsettled and shortly after eating I get pains in the colon which go on for hours - sometimes all night.
The only way I can describe this is 'trapped wind'..... Imagine that you have the worst stomach pain caused by trapped wind...the answer is to leave the room (or if you're Rab/Dj - stay where you are) and do the biggest fart you can muster!
Well, here's the problem of course - I can't fart, so the wind stays trapped and continues to cause pain and discomfort until IT is ready to leave via the Stoma. Last night I was awake from 3.58am to 5.45am just walking round the front room rubbing my tummy and hoping for a blast of air at any point. It didn't happen so eventually gave in, took some paracetamol and went back to bed. Grumpy and tired when I woke at 8.45am this morning.
Some people have said it's trial and error with food but the truth is that currently everything (apart from Sugar Puffs) causes this trapped wind pain - and I mean everything.
I'm trying to motivate myself to eat and have definitely felt 'hungrier' this last week, but then knowing that whatever I do eat will cause pain is yet another reason to try to eat very little.
I'm not sleeping as much as before during the daytime hours now. My weekday routine is to get up at 7am with Dj, sit with him whilst he gets ready for school. He leaves the house at 8am and I tend to have a cup of tea and go back to bed around 8.30am until about 11am. I then stay up and awake until bedtime - so definitely not as sleepy as when I first got out of hospital. I was sleeping more than being awake at one point.
Weekends are different, I get up around 10.30am and then stay up - although yesterday I had a short half hour nap during the afternoon.
If the truth is known though, I'm only able to stay awake until bedtime because I'm doing so very little - being awake is an achievement in itself!.....
Today Rab has done all the housework, hoovering, changed beds, washed up, taken Dj out for some lunch, later on he'll do the ironing for school and work tomorrow - I've managed to get up, have breakfast and shower.
I do feel guilty that he's doing so much and also working full time but I just can't really help yet.
He says 'Just relax, it's fine' but maybe I'm conditioned to feel guilty?
My lovely sister, Sarah, is now here in the UK and she's also been looking after me - along with Rab, Mum, Dad, James, Leanne and continual offers of help from Jacqui, Carrie, Nayla, Hazel and numerous other people - all so appreciated.
Sarah arrived last Sunday and has been over here cooking, ironing and keeping me company - telling me it's okay to cry, it's fine to feel crap about all this and that no-one has the right to tell me that I should be feeling 'grateful' or 'relieved' - which is good, because I feel neither.
Actually I feel like a petulant child - I'll tell you how I feel....... It's not fair, I feel ripped off, my body feels violated, I have zero self confidence now, the bag makes huge embarrassing gas noises when you don't want it to and no noises when you need it to, my whole colon area is uncomfortable and sore, I no longer enjoy food, the Stoma never seems to stop producing more and more crap (even though I'm eating very little), I have no control over basic functions of my body any more, the wound area is numb in places and it's becoming obvious that they have cut through nerves which have affected the 'feeling' there, I have 'phantom pains' in the rectal area, the stitches around the Stoma are sore and irritating, the bag system is just horrible - it stinks when I change it and is just so hard to deal with emotionally (not physically) and I don't want to hear about how bloody lucky I am!
Maybe the next post can be a 'positive one' eh :-)
Oh before I forget, Arsenal top of the Premier League after their win yesterday - now that's positive of course!