About Me

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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..

Sunday, 26 September 2010

Reasons to be Cheerful....

As you know, last week I had my pre-assessment half day at the hospital.

During this visit I met with nurse after nurse and had things done like:
  • blood pressure;
  • pulse and heart rate checked;
  • lungs listened to;
  • height (still not shrunk yet - lol)
  • weight (still putting on the odd pound or two - am now about 8st 2lb);
  • blood tests;
  • urine tests;
  • EGC;
  • got measured for the awful looking stockings that I have to wear for a month after surgery to avoid developing thrombosis;

Left with numerous sheets of paper informing me of this, that and the other......I have enough reading material to keep me going right up to admission.

Also provided with:
  • days worth of drinks to build you up before surgery,
  • then other pre-op drinks to have the day before surgery,
  • plus bowel prep stuff,
  • special scrub stuff that you have to shower with the day of your surgery

Now for my reasons to be cheerful title...amongst the numerous sheets of information paperwork is a list of things that can go wrong during my operation - with instructions that it is essential that you read this sheet in full as you will be expected to give your permission for the operation to be carried out and this sheet explains the risks involved.

It's nicely entitled 'What are the potential risks of APR?'.....Sigh :-(

So, what are the risks then?.......
  • Sexual Dysfunction
  • Bladder Dysfunction
  • Pain
  • Phantom Pain
  • Pelvic Discomfort
  • Perineal Numbness/Tingling
  • Perineal Wound Breakdown

There is then another sheet in my pack which states: 'You will only be advised to have an operation when the advantages outweigh the potential disadvantages'
So what are the advantages of APR? .....
"While it cannot guarantee the disease will not return in the future, this surgery can possibly extend life expectancy and improve related pain symptoms that you may be having'

Yeah Okay.....I get the bit about (possibly) extending life expectancy but improving the pain (which I don't have) by possibly giving me the pain from the list of things that can go wrong above seems like fairly shit choices to me.

I didn't even get to list the 'other' risks associated with major surgery in general for you yet...

Common risks following major operations are:
  • chest infection
  • urinary infection
  • excessive bleeding leading to a blood transfusion being required **(see below for more details on this)
  • blood clot in your leg (DVT)

Less Common risks include:
  1. heart attack
  2. blood clot in your chest
  3. leakage from your internal bowel join
  4. wound dehiscence
  5. damage to or bruising of the nerves which control your bladder and sexual funtion
  6. internal scarring that may require further surgical treatment
  7. damage to your spleen which may have to be removed if it cannot be repaired
  8. accidental damage to the tubes which drain from your kidneys
  9. accidental damage to the bowel, bile duct and other organ.

LOTS of reasons for me to remain cheerful then eh :-))

**Lastly - I have been asked to take part in a trial to ensure that if I need a transfusion during surgery I will only receive blood that has been cleansed of CJD traits - that's a bit of a no brainer really...thought about that for all of maybe 3.5 seconds before agreeing.

I then asked her how they choose their trial patients and she explained that they only invite patients who are at extremely high risk of needing a transfusion during their surgery to take part.....
Ummmm great - another reason to be cheerful then - BUT at least I won't end up with Mad Cow Disease afterwards.

Actually I can't believe that they are still using ANY blood that could potentially have variant CJD contained - but apparently they are!
The ONLY blood automatically cleansed of variant CJD at the moment is blood used in transfusions for children.
The logic being 'at least the next generation should be free of this'...(and me too of course) :-))

We then had a chat about lots of other things and she ended by explaining that if I did have a transfusion during surgery they probably wouldn't tell me (?!!) and the way I will find out is when she contacts me to have blood taken about 8 weeks after surgery....

Then she stood up, shook my hand, said it had been lovely to meet me and what a shame I had this horrid disease to cope with and left saying..... 'So I'll see you in about 8 weeks then'....LOL.


  1. "Sh*T" I'd be speechless after that!

    Mad cow disease? think you may be immune to that! hehe xxx Big hug sis.

  2. Am more or less sure I am immune to that - I HAVE to be immune to something eh :-))

    Hugs back and catch up soon xxx

    PS. Don't worry about me because the post wasn't a 'I'm depressed' post it was a 'bloody hell - look at all this stuff they want you to know' post

  3. Hell love after all that its good to see you still have your sense of humour, keep it up love and stay positive, you will get through this battle with this bloody cancer.

  4. Took me quite a few minutes to understand that the title was sarcastic.


    Was it sarcastic?!?!

    And on top of all the risks that they kindly highlighted for you, CJD could have been one of them also??!!

    Nice of them to ask whether you wanted blood that potentialy carried the disease! I could just see others having to get back to their doctors about that particular predicament. *rolls eyes*

    And love the nonchalant ending to your discussion with the nurse :-)

    "see you in about 8 weeks then"


    Stay strong aunty xx

  5. This is another *funny* thing Lamia, they didn't even mention CJD as a potential risk :-) The first I knew about that was when they asked me if I'd agree to take part in the trial...scary eh!

    Mum - I'll get through this one way or another and at the end of the day I now KNOW I won't end up with Mad Cow disease at least :-))
    Plenty of others things *potentially*, but not Mad Cow!
    See you Wednesday xx