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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..

Monday, 3 May 2010

Night time is the worst time

It's a mystery to me why pain always feels worse at night, maybe it's because I don't have to pretend and keep a brave face on when everyone else is sleeping or maybe pain really IS worse at night?
Even a simple cold or headache feels harder to deal with during the dark hours so maybe it is really worse once it's dark and everyone else is asleep....Just pondering that thought really whilst popping a few more of the stronger painkillers.
I've tried not to take too many of them because they can make you constipated! That would just be an additional pain in the arse :-) so I've limited them and relied on normal over the counter paracetamol and Ibuprofen.

Have lots going through my mind tonight, must contact the bank and sort out the standing order for mortgage, ring the secondary school again if they don't contact me tomorrow so I can get the ball rolling for the September intake. Catch up with Carrie and get the School Journey packing list in advance so I can prepare Dj's suitcase for his school trip early June, look at the website for uniform for September and write a will.....No, I am NOT being morbid just trying to be practical.

I haven't cried at all today (YAY!) so must be coming to terms with things now I guess. In fact I didn't cry yesterday either come to think of it....

Tomorrow I shall contact the Cancer nurses and ask to meet with them again as I've now got lots of additional questions. I needed time to think first because Wednesday wasn't the right time - first I needed to cry and feel a bit sorry for myself, then I needed to get my head into gear and think 'What else do I need to know?'.

I've been reading lots of info online, all useful for making me think about what else I have to discuss with them. Step one is now finding out the actual 'Stage' of the tumour, after that I have other questions.
My Cancer nurse also offered to put me in touch with the Stoma nurses so that I can hopefully meet up with someone, prior to my op, who has already been through this procedure. I'm sure I will find that really helpful.

The hospital team (MDT) are meeting tomorrow, Tuesday 4th May to discuss my treatment plan so I expect I'll hear from one of the nurses later in the day....almost feel a bit in limbo now until I get the results on the actual 'stage' sorted out and find out exactly how far this damn thing has travelled.

One thing I'm pretty unsure about is the Chemo treatment - firstly I'm unsure how my body will handle this aggressive treatment (due to the previous Lupus illness and my already reduced immune system) Secondly I need to know whether it increases the chance of the cancer not returning by enough...one report I was reading online suggested that Chemo only increases the chances of staying in remission by about 4% - if that's the case, I have to really think about whether it's worth doing now or is it something I can try later IF it does return?

I almost want to say 'Just do what you think is necessary' but then I find myself thinking 'No,I want a proper say in where all this goes next'....I think it's normal to feel this confused?

This has really made me think about how I want to vote on Thursday (General Election) this week.
I was definitely an undecided voter but now am sure I will vote Labour after all. They introduced this system where if you are suspected of having Cancer you will be seen within two weeks - that is certainly what has happened to me.
I'm old enough to remember the people laying on trolleys for days on end in corridors under the last Conservative Government and despite their promises I'm not sure I'd trust them enough to give them my vote. Labour have got a lot of things wrong over the past 13 years, but they've also got a lot of things right.
I shall vote Labour for selfish reasons and for future Cancer patients. Waiting two weeks is difficult enough, waiting any longer would be pure torture.

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