cancer as a footnote: a leave of absence

this blog has been vitally important to me over the last year.

but it’s become something i’m not sure i am happy with anymore, and something that i don’t feel is viable.

i’ve had a week or two of getting out and doing things and enjoying life. i wasn’t just reliving and treading through old memories, i was living and making new ones. things happened. i am in this sweet zone right now, where i feel ok most of the time. and this is a precious gift from cancer-land, and treatment land.

P1000487

this is a tattoo on my inner thigh from my favourite morrissey song. i started writing a post about morrissey here, and i wanted to put this in, and i realised that … oh no, it’s a shot of my thigh, and i have hairy legs and a really short skirt on, and does that belong here, in a place like this?

last week, i got drunk. i got really, really drunk with a glorious friend. i got so drunk that i threw up. i did a lot of things, and i had a lot of other adventures. i stayed up way too late, and i ate a WHOLE plate of oysters in a fancy restaurant with a pretty lady and we walked to my bus under the glowing glowing lights and there were bands and there was a window in the room in darlinghurst that looked over a tree, and the house there smells so clean it’s like a hotel, and i sort of love that, you know, because i love hotels because they talk to me about being somewhere else, or between two places. i got manic, and i handled it like an adult, controlling it without drugs because i can do that now, and if i need to control it with drugs i can. and with all this, my liver hurt so badly one night (when i was seeing morrissey) that i pressed my hand against it to try and relieve it. it was like a knife twisting under there, and is almost definitely healing from the incision, not liver failure. today, my liver enzymes were pretty much fine (two slightly high), and i drank more last week than i have in a year and a half. and i couldn’t sleep because 1. i threw out my sleep cycle, and 2. my anti-psychotic had been changed to an extended release variety, meaning it didn’t work as a sedative. i’ve been on sedatives for a long time. i spent a lot of hours staring at the roof thinking about Fisk from Daredevil and how he loves white paintings, and how i love robert ryman, and the glowing room at Dia:Beacon (the best gallery in the world).

and my liver still gets those sharp pains sometimes.

and i am more than this.

i am angry. i am filled with a furious white hot rage that has filled me from my gut, some insubstantial place around the tumours and the cancer and the radiation that’s left me infertile, and it has filled me. i have spent so long gentle and kind. i have spent so long focussing on the POSITIVES of life, and the act of being gentle and kind, and of going quietly, with peace, without rejection, and without without anger. and that’s been me lying. it comes out sometimes, when my phone isn’t working, and in silence, in the quiet of my apartment, i hit it with my fist until i can’t move my hand. or i yell, and swear, at the top of my lungs because i lost an envelope (it had something in it, come on), or that when someone posts something on facebook that’s WRONG, my old ‘oh, time for a fight!’ turns into this glorious power, this fury, where i want to say it’s wrong. and i am done with feeling like this anger is bad. i am done with that idea that i should just be some sort of slim well tanned cancer hero with a photo in my formal dress next to a photo of me glowing at a wedding as a young bridesmaid, and pictures of me hugging animals on the side of the road, and pictures of me jogging, and i don’t know. you look through my facebook photos, and the raw reality of my life is nothing like that.

the raw reality of my life, the narrative leading me to this point, is entirely divorced from this blog. i read through it, and i see these neat cheese slices of what i have been through. and they can be pretty sharp and pretty articulate and say Important and Meaningful things with cancer. and they are just fragments of who i am and what i am and i feel now like that is almost a deception. because it’s not my reality, because my reality is more than just me here, right now, with chemo in my neck, or me being sweet and homely spinning yarn, or me pontificating on those moments where i feel glad to be alive and how i love my friends.

i spent my early twenties dating a man who left his wife and two children for me, moving interstate. when that relationship ended, i obliterated a close friendship because i was a moron, and i will forever regret it. i went to a lot of goth clubs, for years. my undergraduate degree was in fine arts; i love minimalism. i live in abject filth, and i remember taking buckets of garbage out, with TV dinners coated with maggots. i think there was a pomegranate in there. that apartment had a hole in the floor and a huge pipe in the living room. i had a couch i found on the side of the room, and no other furniture in this huge living room, and i listened to P J Harvey all day. i lay on that carpet and it made impressions against my skin in the summer heat, the vile brisbane heat that got over 45 degrees because the place had no ventilation. i had to go to court to break the lease, and i did that on my own.

i met the first person who gave me a relationship which made me a better person in my undergraduate degree and i still love him, but not in a ‘i want to be with you’ way, but in a ‘you are such an important human being to me, and i love your wife, and i adore your child, and i would do anything for you all’ sort of way. and i fucked that up, partly, and things just happened, but it was ok.

i spent two years doing an honours thesis, and hating myself because i realised i could never be a researcher. first, i couldn’t be an artist – art school taught me that. so i thought i could be a literature academic, or do cultural studies. and it was two years, and i tortured myself, working two or three days a week at a book shop, and eating at my favourite cafe (the Alibi Room, where lachlan and i had our first date, and where i had a second home) which had free internet because we didn’t even have the internet connected. i ate like shit; i lived on icecreams and whatever cheap things were in the bar, and i ate one meal a day and drank beer for breakfast.

the mania started to crawl up my neck at the end of honours, and it pushed me to apply for a scholarship for my masters in library studies for a whim, and to apply for library school on a whim, because one time, when i was trying to get off my antidepressants, i catalogued my books in librarything for a whole day, and it was the only thing that made me feel half human. and it was a scholarship, and i got it, and so there, i have a career plan, i am 23 and maybe this will do. and the scholarship was money. a chunk of it. and i worked two or three jobs. and i studied full time. and i drank heavily and danced in dumb bars and one time, me and H screamed out The Lords Prayer with a stranger in the middle of the mall, because all of us used to be fundamentalist christians and right then we all needed to be absolved and right with god, because we were drunk and the stranger was attractive.

i misbehaved. i don’t regret anything, really, only when i hurt people and didn’t try hard enough to be kinder, but most of what i did, it makes up this rich part of who i am. there was one day where me – my group of friends – ate pastry on the side of the road from this amazing french bakery – and then we went to our friend Shannon’s apartment and we sat in a sauna and swam in this pool at the top of a building, and it is one of the most crystalline memories of that year. and this time Jule and i got so drunk that we smashed open our beer glasses on a wall, and drank most of a bottle of spirits in the middle of a vicious brisbane storm and we stood in the water and stared at the sky, and he took off his shirt and i unbuttoned my dress which swung upon so my underwear showed and we floated boats in the street. and we went to some random sound art event, and i don’t even remember if i was sick, and Jule might have tied his shoes together and fallen down the stairs. and a complete stranger took us into his house, and he drove to the shops, leaving us alone there, drenched wet strangers, me with this tangle of glowing red hair and jule in a striped shirt and with his sharp and beautiful features and that kindness of this stranger going to get us cigarette papers because we wanted to smoke has always stayed with me. i slept with strangers in alleyways. i was far, far too alive.

and lachlan and i saw a lot of noise and sound art. and i loved it, i loved the feeling of my ears blowing out and expanding, and the way your hands tremble a little when the noise is so huge, and the tiny little shapes in strange music. i don’t listen to enough experimental now, or maybe that time is gone, and maybe it’s just a special thing i did then. but i remember seeing Keji Heino & Merzbow and Keji made me vividly want to crawl inside a speaker, and just inhabit the space – and Merzbow made me feel bigger than i ever did, and these are the experiences that are hard to explain.

i moved to canberra and it was cold and isolating and i fell into pieces. i had my friend natalie and my dear friend nemo and my friend david and a few others, and you know, they’re all gone now. Natalie and i went to a tattoo parlour and i got my The Smiths tattoo and it was her first tattoo and i owe her so much, she was one of the only good things about that year, that and my job. i flew up to brisbane every other weekend, and it was like i was a suitcase and pieces of paper started flying out because moving to canberra snapped the lock and it fell on the ground. i went to a lot of goth clubs, and i met rob and kerrie, and i met so many people and most of them are gone and i grieve for that.

and then, my friends, i did a lot of dark things that i don’t say here, and i went dark rich places and i pushed myself pretty far. and i started dating a man, old enough to be my father, who intoxicated me in his bright green eyes and his hair that had that way of clinging to looking a bit like Morrissey. every second head in the crowd at the morrissey concert had hair like that. and it was glorious. and it was hideous. and he was a manager in my work place, and i was 24 years old, and in my first professional job, and i was in love with a man old enough to be my father. i was intoxicatingly beautiful then, in the way every smart 24 year old is – and he told me then, that i would look back, very soon, at photos of myself now, and know that i was once beautiful, and that one day, i would look back, and know i wasn’t any more, because we all do. he would stand against the wall at the back of my workplace, and rest one leg against the wall and smoke a cigarette, coughing every now and then. and he was married, and he had three children and i wasn’t ready for any of that. and back then, frankly, i was an idiot and i have no idea what he saw in me, other than that i was 24, and frankly, it was another act of self implosion, mutually assured self destruction because there is only one place this way ever ends up.

it ended there, and i carried?carry the scars from everything that happened after pretty deeply. i made a lot of mistakes. it reconceptualised trust for me, and destroyed my faith in my ability to make decisions, and i was even more self destructive.

i border on having a drinking habit, because i love to drink more than most other things in life. i like the way whiskey burns the back of your throat and the sharpness of tequila and the fullness of red wine and the acidity of white wine and the comfortable heaviness of stout and so on and so on. i manage it well; i was referred to d&a counselling in my Yoof but my late 20’s wore this down.

and i went on, and i did more and more stupid things, lists of stuff that i don’t want to list, just because of the number of people that read this blog, and the demographic, but the sort of things that we don’t talk about in polite places where everyone we know reads it. and they are dumb and maybe boring and maybe interesting and maybe all of those things.

and i met Dom, and she changed me life, and i love her more than life, and we lived together for years, and we drove to the beach late at night, and we would get tattoos in Nowra because they were the only place with walk-ins and we would stay up too late watching tv, and we would drink too much feeling feelings, thinking thoughts, and i was a terrible housemate because i’m a slob, and Dom’s room had these beautifully lined up wobbly bookshelves from the dump shop and always smelt like this perfume she wears that smells like a japanese bathhouse. we’d go to the labour club and eat terrible food and laugh and pull dumb faces and take photos of ourselves at poker machines. i would take her photo when she drove, because though dom is always beautiful, there is something particular about her when she drives, that a photo captures – some part of herself that i love in a really specific way.

and my life imploded in 2011, as the cycles of my bipolar became uncontrollable between the drinking and the late nights and the dark streets and the unbearable lightness of being a completely unwell person trying to function in a full time job that i cared about. i went to arizona to meet someone i had talked to on the internet for a few months. i spent $10000 i didn’t have. and i would go home and stare at flights to random countries, thinking about how many more loans it would take for me to catch the trans-siberian express. and i went to hospital to sort my medication out, and i started on a drug called epilim, because i can’t have lithium, which was combined with a drug called seroquel. they didn’t work, and seemed to make me worse – the mania more destructive and faster, and the depression debilitating to the point where i couldn’t get to work. and they added more drugs, and the doses kept going up, and i just wanted to die, but at the same time, i felt so bad i didn’t because there was nothing there left to kill. and i would not leave the house until the morning because all i would want to do is stand in front of a car, and i didn’t want to hurt anyone other than myself. and i spent all day and all night online, and entangling myself up more and more with people and more and more in words, which are at the end of the day the only place i really feel human, really feel alive, outside of narrow other circumstances, and i let them out, i let them roar, and i didn’t control any of it, and i fucked people over. people i cared about. a stack of them. i built things up like unstable brick walls and i would push them down to hurt myself.

and then i started lamotrigine, my current drug of choice, and mixed it with a baby bit of seroquel. and the depression rolled back over a month and a half and i could breathe again. the intensity was gone, and the darkness was sort of there, but i was calm now. and i met a woman, and she is one of the best things that’s ever been in my life. and then, i started to feel a little bit sick. not much. just a bit of nausea. it started to the month. april 2012. i felt sick and i couldn’t empty the cat litter out because it made me gag a bit. not much. just some smells. they made me feel weird. when i walked past the bin in winter, it was ok, but in autumn and spring and summer, i would start to gag. i had to eat citrus a lot, because it helped a lot. i ate a bit less, and i stopped drinking coffee, and my doctor said it was fine because a lot of tiny people with low blood pressure experience this, and that it could just be my lamotrigine because it started as soon as i started taking this. and i dimmed down, a lot. a lot of the vividness was gone, but i thought it was a small price to pay. i remember the first time i saw friends in melbourne, some months on. late 2012, maybe? they were worried, and thought i seemed different, but maybe i wasn’t different because of the medication like i thought, but because of the crawling, crawling nausea, and the tiredness that meant i didn’t want to out at night, and the fear in my heart that i would hurt people if i ever spoke intensely every again.

and i started going out less and less, and i was tired more. but i wasn’t depressed at all. i was happy, and i started doing quiet crafts, because i could fit that in. i was slower, but well, i’m 29 now, and that’s what happens? our personalities change, and they do when you take psychiatric drugs. and so maybe i was better now. and then i started to get more tired. and my ribcage started hurting. i worked with my physio and i went to the gym, and we took it easy. but i was getting fit, you know! even with these weird pains in my ribcage. and i felt more sick. i could sometimes struggle to walk into the city early in the morning, bile in the back of my throat, but i just avoided onions and garlic. and then some other foods, and then more foods. but sugar was ok? and plain rice? this has to be something minor. i am a hypercondriac with an anxiety disorder.

and then. they found the tumours.

and then, this.

and this is just the little bits. these are nothing, really, on the layout of my actual life, and the stories that make me who and what i am, outside of cancer.

and i fill my life with complications. i fill my life with mess, and difficulty. i am a bad person sometimes, and i am selfish and boring and self interested, and arrogant, and brash, and too loud at parties, or too quiet at them, and i say inappropriate things sometimes, like a child, for attention and to make people uncomfortable, and i can be manipulative, and i can be lazy, and i can be so conflict or difficult averse that i put off saying anything for years because i am so scared of overdoing anything because i overdo everything. i can be greedy and i eat my food really fast – too fast, actually, it gives me stomach aches, and i am a terrible drunk who yells stuff out, and i am even more of these things that i won’t list because of what this blog is.

and i am better at these things but these things are still a part of me. the part of me with impulse tattoos and piercings all over my body that i got because i felt sad, or i felt happy, or that i felt like i needed to express i was confused about life so i got a tattoo of a question mark between my breasts. these aren’t parts of me that i am ashamed of.

but they are parts of me that don’t belong in a place where i talk carefully about strong feelings and i try and look neat. i try and not look like a person who didn’t wash any of her clothes for a year and just bought new ones when they got dirty, or someone who would regularly drink beer for breakfast because carbs, right? or that seriously, i don’t cook for myself, i just eat take away, and i never clean up unless i’m pushed to because i’m filthy and i don’t see mess and i can be a vortex. there are so many more parts of me, and i got this feeling like all these parts of me, the ugly and the good and the bad were fading out into this cancer patient with short hair, bravely facing surgery with a laugh, carefully moderating my diet and talking about exercise and empowerment and wanting to be a voice for the chronically ill, between talking though how i feel about my own mortality. but even THAT is neatly done, tidy, and it might look raw but you never saw all the words that i took out, or the references to times where i didn’t just want to die, but i had plans.

we memorialise cancer patients. we don’t speak ill of them. we don’t go ‘our friend with cancer acted really selfishly today’, or ‘our friend with cancer did some stuff in her teens that was really destructive and cruel to people she loved like me’ or ‘that person with cancer is just a fucking complicated beast like the rest of us’ because blogs like this, to me, narrow me down into a space where i am just this disease.

my nurse saw me today, and she said i looked fantastic. and i told her – because i have an almost Catholic need to confess when i fuck up – that i got gloriously drunk during the week, which makes me a terrible cancer patient. and she looked at me, and she smiled, and she said ‘elizabeth, i am so glad you did that. reclaim that part of your life. reclaim that part of you. just don’t do it often.’ and that shitty, selfish, dank dark person is largely gone, because the lamotrigine does quiet down these parts of me, but there is so much more to me than this little husk of cancer sitting on the couch, playing nice, marking time between scans with watching shit on netflix and doing my craft like a good girl, be a good girl. i always liked those things. i’ve knitted for years, and i love tv with an irrational passion. but i am sometimes excessive and sometimes terrible, and sometimes honestly just really too much, and that part of me slipped away so slowly when the nausea took over, until i didn’t notice, and then i had cancer, and then i was THIS, and now, i got really drunk and i was hungover the next day, and i saw my favourite band and i was against the barricades and i was screaming like i was 19 again, and i did things and i saw people and stuff happened and this is a part of me too and this is a part of me that doesn’t belong here.

so i might be back or i might not be back or i might write somewhere else where i don’t tell people or many people (it won’t have my name. it won’t have my workplace. it won’t have details of a lot of stuff in my life that pins it to me, it’s not about libraries, or my job, really, and if it is about cancer, it is about all the things i never said here) and i don’t know, but i feel good. i am not manic, i’m just happy. and cancer is a footnote.

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About elizabeth

various things.
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5 Responses to cancer as a footnote: a leave of absence

  1. Col says:

    Fuck yeah lizzle
    Rage…

  2. Joanne says:

    Wow, that is stunning, stunning writing. I feel honoured to have read it. Thank you.

  3. Patricia Allen says:

    Your writing is very powerful. I felt like you were standing behind a curtain that was blowing in the wind and every now and then I got a glimpse of the raw You, sharing what is not too tender of who you are, and the road you have travelled so far. Whether you come back here or not, please do not ever stop writing. (Though hopefully you will still come back and visit from time to time – I will keep checking).

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