8 months (and a bit) of living with a death sentence. thoughts

it’s been 8 months. can you believe it? i can’t believe it. 8 months of doctors and hospitals and waiting rooms. 8 months of the nutra-blast commercial, of repeats of The Block shown at midday, of Ellen. 8 months of waiting room magazines. 8 months of the silence of the appointment clinic, the friendly smiles exchanged in the radiation waiting room, and the occasional chats with other patients in the chemo ward. 8 months of nurses who make me want to live even when i think it would be easier to die. 8 months of knowing, more intimately than i think i ever would have otherwise, that my life matters to way more people than i thought it did.

i don’t really know what i’ve ‘learned’ at this point about living with cancer. i’ve read a lot of texts that talk about impermanence and it’s something i take great solace in. i have learned impermanence intimately. i remember it with every breath in, every breath out. i lived a lie my entire life – that convenient delusion of a future, of a past. it’s nothing. there is nothing, just the in breath. the out breath. it’s beyond living in the moment – it’s about realising everything beyond that moment is a delusion. sometimes i get caught up in my narrative of unfairness and deprivation and mourning and loss. but it was a loss for something that didn’t even exist. it is a strange illusion.

my relationship to death has changed completely. i don’t want to die yet, but i no longer face the idea with terror. i long for living long and dying quietly and painlessly in old age. but i’m not going to count on it. no one should.

i don’t get the whole ‘i must never waste time! each moment is precious!’. it’s an easy and cruel thing to buy into. sometimes you just have to sleep. or sit on the internet talking to people. or flick between cat videos and news websites. the idea that knowing you are dying from an illness means you must become some special human being who only spends time on sacred and worthwhile things really annoys me, because it just adds to the guilt tripping narratives around cancer. you wanna just eat cake in bed and check instagram on your phone all day? GO YOU. YOU ARE STILL A CANCER HERO. yeah, maybe i shouldn’t have watched every episode of Boston Legal. maybe i shouldn’t now be hanging out excitedly about each new episode of Suits. maybe my joy over watching the Harry Potter films should be invested in something more heroic. but i hate that story. i want to spend my time however i want to, without feeling judged about it.

i have accepted that, for now, support groups are not for me. they might be in the future, and i think they are amazing and valuable things. but i found myself in tears, or terrified, or confused more often than not in the few different support groups i’ve looked at. and that’s ok. i feel bad about it – i feel like i’m missing something or not trying hard enough, but it’s ok. i have my own ways of getting support, and i find groups a bit daunting, always like a party in first year uni where everyone else is a way cooler art student than i am, dorky and skinny and acne covered, with no life experience at all.

i now have a lot more of a life outside of cancer. it’s still negotiated around it, and that’s ok as well – and i also know it’s ok to accept that right now, having cancer is a part of my identity. it doesn’t make me ‘cancergirl’ and it’s not something i should be ashamed of, or not talk about, or pretend isn’t happening. another thing i feel bad about is talking about it too much. i shouldn’t be thinking about it! why make it such a part of your identity? i feel like people think this. but, when you go to the hospital every day for a month, where most days you are getting calls about blood tests or scans or different surgeons appointments? it does become an important part of your identity. i don’t want to pretend this isn’t happening to me. it is. and it sucks, but that’s ok.

bad days still happen. i think they always will happen. there are days where it doesn’t seem worth it, but i’ve had enough now to know that the good days massively outweigh the bad. sometimes, sitting in another hospital waiting room, the fact that this is something i need to keep doing overwhelms me. it is huge. puncture marks and abdominal scarring and sleepless nights and those endless cream coloured hospital places. cream coloured CT and PET and MRI scan machines, being fed into them and out of them. cream coloured floors that have the unique hospital smell clinging to them. cream coloured walls, cream coloured ceilings. flashes of light blue, on curtains, or on the radiation machine. and that horrible, horrible purple of the chemo protocol gloves, and the bins where your spent bags of drugs go. will i ever get out of this? will i ever be free of this? and the answer is unknown. freedom from this is unlikely, so it’s my attitude i need to keep track of. it’s ok to some days wake up, and just hate it so bitterly that you can only stare into space in bed and plead with gods you don’t believe in to make it all go away. and then, other days, you just get up, eat some vegan cupcakes, and check your instagram.

and some days? i am angry at everyone i know who doesn’t have cancer or any other chronic illness. i am so jealous of that life, of that existence. a day where you wake up and, no matter how bad you feel, it’s not cancer. it’s not bipolar. it’s not diabetes. it’s not AIDS. it’s not Hep C. i want that life. and i don’t get that life. neither do any of the other folk out there with chronic illness. and that sucks. but then i buy some scrappy but nice first editions of Patrick White novels, and a lovely woman i’ve never met gives me an incredible oncology massage, and i can smell dinner cooking, and it is ok.

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About elizabeth

various things.
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