Saturday 28 September 2013

Degeneration

I have found a good friend in Jane from the forum, she is intelligent funny not that much younger than me and to cap it all used to be married to a Moroccan and both her boys are mixed like mine. She however managed to extricate herself and find a good man in Al and went on to have a little girl too.
She posted something on the forum the other night which I could so strongly relate to, she had accepted that she will not live a long life. Me too, not everyone wants to hear that 'oh don't say that' 'oh you'll probably be around for years' everyone means well and likely feel that to except yr limitations is to give up. Well ironically I still hope to be well, I still hope to see my boys grow up but I know that this  isn't going to happen.
I booked some theatre tickets earlier On in hone year before I was taken ill, I have stopped doing that now. I missed the performances because I was too ill. I can't count on the future anymore and have realised sadly that I am unlikely to go abroad again and visit beautiful countries. The insurance is too high and the risk too great. So already I am limited through this disease, already I cannot take it for granted that I will be here if I book in advance.
Likelihood is it will be a while yet but my body is starting to fail me already. In the six years up until my last op it's soldiered on and not give me much in the way of grief, a niggle here and there. But now I have back pain and PV bleeding that increases the more energetic I am from the pelvic tumour, so caught between a rock and a hard place in respect of getting my stamina back. I have also developed a problem I think called bppf ......that's short for a long worded condition which basically means that if I get up quickly and more likely if I turn suddenly in bed the room starts to spin. It started when I was in Orlando Florida last year and was so bad at times I would hold onto the bed in case i fell off! Whilst i was in hospital in tommies I told the surgeon who got me a head scan just in case, everything was fine, it isn't a nice sensation but I am getting used to it and just close my eyes and remain still until it passes.
If feels like the start of the slippery slope, how long will I be able to manage the pain of the tumour in my spine? At what point does the pelvic tumour become a problem, and my lungs they aren't feeling up to scratch at the moment but that could be my general malaise. Such a guessing game.

4 comments:

  1. Dear Hazel
    I am sorry to read this, and sorry, too that no one else has commented. Perhaps folk don't know what to say in the face of such plain talking.

    I totally agree with what you say, and one thing that has annoyed me in my own experience of cancer has been whenever I express opinions about my life-expectancy etc and people try to shut me up. Grrrr

    Maybe they mean well in this situation .... or more likely they cannot cope with it, so they want you to shut up.

    Well I can cope with it and you are having to cope with it, and I hope your best mates read this and are able to cope with it too. I bet some of them already do, but if any of them are really not on task with it perhaps they will realise that they have to cope with it too. I certainly have a few good pals who would let me do it and mainly it was NOT my best friends who did that shutting me up thing.

    It is so important to have reliable ppl who will allow you all the time and space you need to talk about this when the mood takes you ... which knowing you wont be very often, but when you want to ... you need the support of your pals to allow you to - it as act of great kindness for friends to be able to do this for you.

    And you know where I am .. if ever I can help with absorbing some of this for you
    x

    ReplyDelete
  2. hi hazel ....
    thinking of you at this time your a brave lady
    God bless you

    ReplyDelete
  3. March is colorectal cancer awareness(http://colorectal-surgeon.com.au/) month . lets unite to spread the awareness.

    ReplyDelete
  4. I have been going through the same situation @Suze.. I am colon cancer survivor who got treatment from CSCS

    ReplyDelete