i have been a bit… i’ve been struggling to know where to start with lately, not even remembering where i left off. it was my birthday. i broke out of hospital when i was anaemic because i wanted to go to a wedding and stay at a BnB in the middle of nowhere and i did both those things. my birthday was good and i could barely eat my fancy meal but i had a mouthful of everything and it was all delicious and worth it. then my doctors told me, the next day, that my liver was failing.
it’s still failing, just a bit slower. it’s… holding its own. there’s no definitive way to work out how or why without invasive tests that seem somewhat pointless about now if i’m taking a ‘less aggressive’ approach to disease progression – my only concession to this is being obstinate about taking the chemo tablets, even at sub clinical dosages, to try and do anything at all. there is no definitive way to know what is happening in my body unless they try and work out if my bile ducts are being choked by tumours or lymph nodes or if my liver is just packing it in. there’s no way of knowing how to stop it. i am here, my body is here, i am in my body, and i am out of control of everything. i had fancy soda today. it was lemon, but there was this syrup with it. i added the syrup to the soda, and it went purple, even though the syrup was blue. it was real good.
and this leads into this strong sense of… intensity seems the wrong word, because i’m just repeating ‘strong’ again. the possibility of moving to melbourne – one of the only things i wanted – is out of the question – the physical stress of moving may be too much (or may not be) – and i am tired a lot of the time. i don’t know if i’m tired because i am justifiably depressed though.
i worry about everyone around me. i want to make this ‘easier’ and i want to somehow leave meaning, some track, some trace, something for the people who have given me so much. and it is selfish because i want to survive.
because i don’t want to die.
i’m coming to feel like ‘mindfulness’ is bunk. i can sit here and observe the motion of the pleasure of eating a mandarine (i love mandarines more than almost any other food) and i can ‘exist in the moment’ at the push and pull of everything else in my head, as though ‘this moment’ is more authentic than all the moments that have lead to this one, or all the ones that will follow. or i can understand that all these moments exist, and i will feel things. ‘let the feelings wash over you’ ‘appreciate the way you feel when you just being’ is all good and well until you realise that your state of ‘not being’ is close.
and ‘not being’ is a solid thing, you know. i know i will live on, both here in writing, in memories, in the impact i have on people, but that isn’t alive. that’s not travelling to mongolia (i once almost randomly booked tickets to mongolia one day at work in 2011. with literally no cash other than my credit card. i wanted to go to a yurt. i am bipolar!). it is not having a little goat farm in tasmania (i would be the shittest farmer) and it’s not living a life where for the last almost-two-years i’d been getting up and going to work and sharing my life with my partner as a human being rather than a dependent. i’d give up the fact that my words have now gone global for that, you know? i want that imaginary life. i want to be alive.
i can’t donate my body to science. the university in canberra that takes cadavers doesn’t, for some reason, accept GI cancer bodies. maybe it’s not a research speciality. i thought about contacting them, or my liver surgeon – my liver is, of course, spectacular – but the idea of an eco burial in the new site in canberra appeals to me a lot. it’s a shroud in the ground with a tree over the top, and i feel blessed i get that option; no box or burning, just dirt. and i am not blessed, and it is garbage to think of the options of my rotting body as a blessing, because i don’t want to die.
my own time post diagnosis has also been, compared to so much of what i’ve seen, effortless. i had support, an amazing medical team, a body that was robust enough to cope with an astoundingly large amount of treatment (i mean, i’ve seen people on message boards who’ve had 50-100 cycles of chemo, and god, i’m at almost 30 and that’s bad enough – but still, it’s a lot), and both income and medical insurance. i have had limited side effects. i look, for all intents and purposes, still fairly normal, if a bit on the thin side and occasionally a slightly odd shade of yellow. i wonder if i should feel gratitude for this, this gratitude influx.
i was talking to my therapist (one i used to see years ago in brisbane, and who, for some reason, i just needed to talk about dying to – as though in some way our history would help me, and it has) about how hard things in our lives make us stronger and she told me to stop. and she said, ‘that is psychobabble. it’s hard. it makes our lives harder. it hinders the things you want to do. it doesn’t make your life better.’ all of this: i haven’t grown because i have cancer. i am not now some stronger, better, braver, more courageous person because i’m waiting for my liver to fail. i am sick, i am 32, i am going to die, i am going to miss out on living a longer, probably very normal and average (as well, most people’s are) life, where i do things and did things and make an impact on some people and fuck up other things. what has this taught me? that i can have cancer? well done. slow clap. shocking. yeah. we’ve all come on the journey. we’ve all seen what it looks like, and you know what, you’ll all get to see it again and again and again as, well, everyone dies.
for some people – and here, i talk mostly to the people who i know offline – this might be the first time they really see ‘death’ – the process of someone they know, their own age (ish) dying. the act and use of social media for me in this is tied into it. my twitter is private for personal reasons but i kept it open for years. my facebook is locked down mostly because, well, seriously, who has an open facebook these days, but i use it to communicate with groups of people. i guess a part of me wants to make it less shocking by sharing details.
i get trapped in creating meaning as well. my incredible nurse care co-ordinator (when i get sicker, i’m listing all their names, but i still keep it confidential just because it seems weird to me to blog using their names, even though i know some of you read it, which is flattering) often has to just tell me that it’s ok if all i want to do is sit around and watch The Hunger Games movies or re-watch Star Trek, and that i don’t need to spend every moment engaging with the world. she told me that watching The Hunger Games is meaningful because through doing this, i am taking my mind off things, or enjoying myself, or whatever it is we do when we watch trashy movies or TV that we like, and that this is ok. i don’t need to be in this mindful and meditative zone where all i do is feel profound about my observations about life and death.
because you know what they are? crying a lot. my observations are that i cry a lot because i don’t want to die. i could make it more complicated, still, or use pretty words, or use some sort of amazing metaphor but it it’s all garbage because at the heart of it, i am 32 years old, and i don’t want to die. i don’t want to be ‘dying’. i don’t want to be a patient who is no longer ‘curable’ and using terms like ‘life limiting disease’ because it lessens the blow of dying. but that is what it is. it is staring at my hands typing this and knowing they will be white-washed bones by this time next year – or less than that, i don’t know that much about decomposition. it is knowing that the slow decline i’ve written about before is here, that i am on that space, that i am in that space, and that i am starting to fade. and that it flickers up, and down and i have days where i feel completely normal, physically, other than a slightly odd niggle in my right ribcage, verses days of intense exhaustion. and pulling that out from depression is hard as well.
so i don’t think creating ‘meaning’ makes sense right now. i’m going to do this thing where you sleep next to a bear at a zoo on friday. yeah, i know. zoos. i know this guys, they aren’t great. we’re planning a trip to tasmania. i am trying to plan past june. i am trying, trying, trying to have hope. i’m not hoping for a cure, i am hoping to just be alive, just that little bit longer. to have minimal fevers, minimal stoma garbage, minimal pain, minimal nausea, all that sort of stuff. i want to keep it under control, i want to live, i want to be alive, i want to be alive.
i don’t want to die.