looking for sad-answers.

i think i know a bit of what’s been getting me down.

i’ve spoken a lot of why i hate the war metaphor for cancer, and how it effect us all. it’s all good and well when we have ‘victories’ but we enter this war wounded and damaged. we come from a place of vulnerability in our bodies which are not working, not out of violence but out of nothing other than some freak genetic misery.

so, when treatment goes well, we ‘win’. we are victorious against this disease that is sinking into us, cell by miserably cell, over and over again. we won. i won.

and then, we lose. we have some setback, and i can’t help but, stupidly, blame myself for it. this is my fault. the inoperable tumour was because i didn’t cancer hard enough. i wasn’t strong enough. i wan’t good enough to have the chemo work to the point where this could recede enough to operate. i feel like a failure, a loser, who is back in the war with another huge gash on me, and another step closer to dying.

i am starting a new level of acceptance now. i am reading about people dying from cancer, which is, i think, a part of what’s getting me down right now. this is important, because – war/journey/whatever, this is a part of the whole that we face.

i turned to a blog that helps me a lot, by Ben​ and read an entry he wrote – about ‘curve balls’ which hit you during treatment – something i like more than battles, and an entry he wrote last year about the people you lose along the way with cancer treatment. i had put the latter entry off because i wasn’t ready, but i am now. i am. but that doesn’t mean it’s not hard, or heartbreaking, or just feels too big for me to see.

my nurse care co-ordinator talked to me for ages today – talking me down off the ‘oh god i am about to die’ bridge and giving me advice – the same old ‘don’t think about the what-ifs, it doesn’t help – you’ve responded to FOLFIRI really well – you are healthy and happy and you are living right now’. i talked about the idea of ‘soon’ – what does soon mean, and how we just don’t know anything – if i will live 5 years, or 10, or 2, and how it is impossible, just impossible, because no one has a crystal ball.

does that help? i’m not sure because right now, i am in a bad patch. i cry a lot. a LOT. for all the braveness and hero-ness, it’s not taking the edge off the crying, but it’s ok to cry and i know that.

it was my first day of what i am calling chemo 2.0. so, either chemo 13, or chemo 2.1, not sure exactly what just yet.

i feel like i am in a cage, that shrinks and shrinks, and it is on a bus and it is taking me to get put down, and i don’t know how to stop it, i just want to get off but there is nothing, there is no getting off and there is no getting out of this and i will have cancer until i day and i hate that more than anyone, other than the other people here who also have advanced cancer, will understand. i have this desperate intense feeling that i want out somehow, that i want out of my body, and out of this disease and the only way out is more invasive, gross treatment.

my tumour markers are up from 140 to 700. no one is worried. but it’s not their body, and it is not their tumours, and i am sorry, but you cannot understand, you cannot understand unless this is your body too.

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About elizabeth

various things.
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4 Responses to looking for sad-answers.

  1. chasingthesun2012 says:

    Understandable Elizabeth.
    Hope you are having a better day today.

  2. Ingrid says:

    A few things you reminded me of…
    For metaphors other than war:
    [audio src="http://download.publicradio.org/podcast/being/poetry/johnodonohue_a_blessing_for_a_friend.mp3" /]
    For times of stress (and emergency knitting science around 30 mins in):
    http://libwww.freelibrary.org/authorevents/podcast.cfm?podcastID=103
    More on making things (and the Sadako story):
    http://www.mediocrebedamned.com/1000-origami-cranes-tjjs-ep-12/
    When I was listening to that last one I remembered your needle felted creatures (rabbit?). Still haven’t found myself felting needles, maybe one day… In the meantime I have pulled out last winter’s process knitting.
    Also I liked your last post about memories. I was briefly in Brisbane recently and stopped in to the Aromas at the Regent. Oh, the saudade… I hope you keep writing those stories. Have you read ‘Romeo of the Underworld’?

  3. greenspace01 says:

    no, I can’t imagine having tumour markers going up from 140 to 700 and being told that’s okay. I’m glad the medicos say it’s okay, but I don’t understand it, can’t imagine what it feels like to have that, and don’t like that you have it.
    you really do write well.

  4. Jan says:

    Sometimes I work with your sister, Anita. She’s lovely, and she loves you so. I am sending you -me, stranger – a prayer of the spacious kind, that feathers the many nests that are yours. It’s strange, the day Anita shared your journey with me, I read your blog and pulled my spinning wheel out from under the house and started ‘fussing’. X

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