the inevitability of a slow decline.

i did something that i know is not helpful for me.  i always think it will be. it never is.

i have this weird gurgling under my right ribcage. i am terrified it’s tumours growing – the veins making sounds as they form. i have no scientific backing behind this, and in fact, know virtually nothing about how tumours form.  it scares me anyway. so i doctor-googled it, and ended up in a stage IV colorectal cancer message board.

i’ve spoken numerous times about the push-pull feeling i have for support groups – how on one hand, i see what i’m going through described, and i felt suddenly less alone. however, right now, it’s not feeling alone that is a problem – it is dealing with the reality of what is going to happen to me.  and those groups – especially ones dominated with fellow advanced cancer sufferers – illustrate it in vivid clarity.

i may get better. i may have months of it. or years. and then the cancer comes back. it invades bones, and the abdominal cavity. it wraps around the heart, it flickers all through the brain. it fills the liver, it chokes the lungs. and it will get you. you might tackle it for a bit, and stay on top. you will take the chemo, have the radiation, and be brutalised, over and over again, just to try and beat off the inevitable.

sometimes i try and pretend this is not my fate. that i will be remarkable. that the liver resection will get it all, and i will be ok. i will live to see my dream of a tiny farm in tasmania. growing old. going to iceland. but that is, most likely, not going to happen. i will try and stand, TOUGH, hard, fierce against it, and it will kill me anyway. i will not lose a courageous battle: i don’t want to shroud this in sweet terms or easy listening music. i will die.

there are the odd few here and there who get beyond it, who are No Evidence of Disease. my tumours are ugly and shaped like citrus fruit and every single time i feel a gurgle, or my stomach bloats from the radiation or my diet or god knows what, i am afraid. the radiation is draining everything out of me. i am stuck on an essay. i am stuck on a paper i need to present at work. i am stuck on my knitting. everything is heavy and i keep crying at stupid stuff on the internet because Hormones.

maybe i am missing something in support groups. i desperately want them to make me feel better, because i desperately want to feel less alone, less frightened. and i see nothing more than the glaring fact of my death, and that i won’t cheat it, that i am not that special, that remarkable, or that marvellous. and even if i were those things, those things and more, i am not immune. every single damn time i see …. died of cancer it burns something in me, that perpetual ironed on reminder of what will happen to me. then the loop thinking starts – the what-is-the-point thinking – the why-do-i-bother thinking – the it-is-going-to-hurt-so-much thinking. i worry about the staircase trapping me in the apartment, but then i don’t even want to think about needing to leave it because of the cats. we’ve talked about training the cats to walk on leads so they can visit me if i end up in hospice. sorry. when.

grief is not linear, especially when what you grieve for isn’t yet dead. there’s so much out there on how to grieve for other people, but how do you grieve for your own life? how do you reach inside that soft tenderness of your own mutability, and your own knowledge of being without a future that you thought you had, and find any sort of peace or acceptance. there isn’t much language about that. only the dark sort of sadness of a group of people who all know what will kill them. is there strength in numbers? i find a great deal of support from the other people i know who have had, or do have cancer. and chronic illness. but seeing lists of chemo protocols, a footer note of each surgery, each procedure, each scan schedule, each listed time of NED, followed by ‘bone mets’. i get it. ‘you’re young! you’re healthy! you’re fit! elizabeth, we believe in you!’ and i don’t know what they are believing in.

what is quality of life when the decline starts? what is it that makes life worth living? what happens when each item of food i love becomes repulsive or tasteless? when i am too tired to read, when the chemo has drenched my memory so badly i forget words and places and memories? what is it when i can only watch tv halfheartedly, too drained to fly interstate to visit friends, too sore to walk to a coffeeshop that i can’t eat anything at anyway. i know, focus on the positives! i know, one day at a time. i can’t keep thinking that, though, when this – this is what i have to look forward to. this is where life is going to take me: not the career i was planning to build in digital archives (i don’t even have a good enough memory to do much more than write now, and even the people who are best at words rarely make a living from it) not the simple gift of growing older, not even finishing all my craft or reading all those books. don’t tell me not to be angry. don’t tell me i am engaged in a misery competition. don’t tell me how i am supposed to feel because this is all miserable, horrible business and i am going to die soon.

sometimes it is hard to see a point. sometimes, i feel utterly broken and helpless in the face of all this. sometimes, i imagine everyone i know who doesn’t like me smirking, happily at my decline. or worse, sometimes i see the people i love who are, and will continue to suffer from what this is doing to me. nothing about this feels just. nothing about this is just. nothing about our expected life, our expected identity, our expected self needs, requires, or fits in with the notion of justice. and there never was a point. there never will be a point. and that is ok. i have always lived without purpose, well, at least since i lost my faith – years ago now – and i know that what we call meaning comes only through the love we show, and are shown. i get that. but i look at my life, and i look into the face of my own death, and i wish there was a reason, or a God behind all this, so at least i’d have something to blame other than my DNA.

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About elizabeth

various things.
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6 Responses to the inevitability of a slow decline.

  1. greenspace01 says:

    that is awful. cancer truly sucks.
    your writing is beautiful. I envy your skill and your confidence in writing

  2. Sarah says:

    I know my words won’t help, but I wanted to let you know how beautiful your writing is. Real, open, and honest. Their is great courage in your honesty. I hope you find some comfort in knowing how much your words move us and help us to understand a tiny sliver of what you (and others) are living through. If there is something up there, I will keep you in my prayers. Much love.

  3. Oh Elizabeth xx – we have spoken of this before, you and I – of the push and pull of support groups and forums and getting sucked into that spiralling mire of fear and yet not being quite able to look away – that you have described so utterly and so eloquently here. Such beautiful, beautiful writing my dear and I admire you so much for not being afraid to say how much this thing sucks x

  4. katiedavis says:

    Fuck it all. Really. Just fuck. It. All. Except for your beautiful, perfect words. x

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