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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..

Friday 13 August 2010

Disappointed ...to say the least

I'm really unable to talk about the effect this has had on me emotionally at the moment but yesterday I had my appointment at an alternative hospital for a 2nd opinion.

I saw a very nice, very kind consultant Mr K who explained in his opinion that there was NO alternative for me. The tumour is sited too low to even attempt any alternative treatment so it has to be removal of the whole area and this of course means a permanent colostomy bag and stoma.
He said it was a very 'unfortunate' cancer (which basically means hard to treat, hard to stop reoccurance, hard on me)...
He went on to say that even if the tumour appears to have died, I should still have the op incase it comes back again - however........we'll cross that bridge if we ever get to it.

Emotionally I'm wrecked, this was the 'last chance saloon' really and now I have to face facts.
Hard, so hard and I've cried so much now in the past 24 hours that I find myself thinking I must be all cried out now -then I cry some more. I guess I have to do this until I am all cried out - then move on.

It's not just the bag, although that's a HUGE part of it all, it's the idea of my intestines poking through my stomach for the rest of my life (however long that may or may not be), it's the thought of the pain involved in this operation - I was informed right at the start this is an extremely painful procedure and one that takes months to start to recover from, it's also about other damage they can cause whilst carrying out this op, it's also the psycological side of things, the way I now feel about myself and I don't feel I can, or want to, cope with this at all.

Enough for now - thanks everyone for the support. I'll be back when I've regained some control over my emotional state.
Much luv xx

10 comments:

  1. Sis, I'm so so sorry for you. How you manage to carry on I just don't know but you do and you will. Lots of negative things about the operation, you have researched and know that well, but lets all hope there are positives as well. Love you sis, xxxxxxx
    ps thanks for the help with the chicken curry receipe today, as if you don't have enough on your plate! you see, you still carry on.......

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  2. Carol, you WILL be okay...

    You already have the right mindset to give yourself time and space. So when you are ready, be it today, tomorrow or next month, give me a call.

    My experience of Stanley was extreme as was your radiotherapy and both our chemo but we got through it!...it took me 2 weeks to look at mine and 7 weeks to get out of hospital. The only reason I had so much trouble was because a stitch dropped out!

    I think the reason we get on is because I tell you the truth and you seem to appreciate that so when you are ready call and ask me all the questions...

    My 'stats' are I have a less than 35% chance of being here in 5 years time - If I dwelled on whatever time I have left (It could be a year, 10yrs or even 50 years) what life would I have.

    I am not going to tell you motivational stuff as that is not what you need - you need to be left alone to digest and accept because that is what needs to happen...

    Don't borrow trouble til it comes dear friend.

    Thank-you for all you have done for me, I have a feeling we will be friends for a few years yet.

    Much Love

    Tony xx

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  3. I'm so sorry to hear your news Carole.
    I'm thinking about you - and wishing you all the strength to begin to deal with the road ahead.
    You can and you will find a way to cope.
    I wish I could give you a hug.
    And I wish I could find something useful and wise to say, but I can't.
    Just know that I'm thinking of you.

    Shents xxxx

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  4. Just wanted to say a quick thank you to everyone for the comments, emails and ongoing support you all offer.

    I'm working through things and although still not clear, I'll get to the right place - for me - eventually.
    I'm currently concentrating on trying to find as many positive experiences of stoma's and colostomies as possible and I can assure you this is NOT easy...so any links that I might find helpful please do post them on my comments section so I can review.
    Thanks C xxxx

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  5. I wish I could help with the positive experience bit personally, however I suppose I can be the balanced discussion...It was not all bad as at first my experience of facing up to it took a week or so and of course I was one of the 'lucky' ones that could have it reversed...I wish I could help some more but can be a sounding board for issues and trouble :-).

    Here is a link as requested:

    http://www.healingwell.com/community/default.aspx?f=38&m=1752674

    On my investigations I also came across stoma irrigation which I will share with you via email if you would like...apparently it is a little known method of flushing things through and you only have to wear a little cap type bag....I will email you the link when you are ready...let me know.

    Speak soon, don't forget to email your full name and address so that I can send you that present...you will love it!

    Much Love

    T x

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  6. David (aka cybershot on CRUK forum)15 August 2010 at 07:37

    Under these circumstances nothing I say will ease the hurt and anguish you feel but I want you to know my thoughts are with you and I wish you all the resolve in the world to tackle these latest hurdles as best you can.

    David [X]

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  7. Thank you David, so appreciated. xx

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  8. Dear Dear Carole,What can I say? This is so unfair,you are too kind and lovely for this to be thrown at you.
    My thoughts are with you and your family.I know you will deal with this when you have had time to grieve,your strength and spirit will get you there.
    Good luck dear friend,
    Rose xx

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  9. Thank you Rose, I'm dealing with it quite well at the moment by simply ignoring it :-)

    I'm just not ready to face up to this yet, I'm still reading up on various papers from doctors to other doctors (learning words that I had no understanding of previously - why DO doctors use terminology designed to confuse us..)

    I have lots of questions to ask on the 25th but have not yet reached a final decision - although they obviously have.
    We shall see nearer the time.

    Thank you for your lovely message Rose, xxx

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  10. One thing's for certain: if you have the op, no one would ever be able to accuse you of talking out of your arse!

    Can I say 'arse' in your blog? Oh. I just did.

    xx

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