and for lo, it goes on – stomarama

the stoma seems to settle for a bit, and then just flair up again.  i’m getting a better handle on it, but i had a bleed in the middle of the night. i didn’t need to go to the ER, but it took out a few hours to make sure it was ok, and i called out the night time community nurses to help me in case i couldn’t get it to clot on my own with pressure. my stoma itself keeps swelling, so i keep needing to change the sorts of bags i have – there’s now about 10 boxes of bags just sitting around i need to return, or do something with, because if the stoma is too big for the hole in my bag, i risk knocking the edge, causing more bleeding, and starting the cycle again. my stoma nurse admits that this isn’t a problem she’s encountered, because most people get them after the cancer’s resolved or being, not when the cancer is essentially ripping the body to pieces. sinking boat, sinking boat. we are plugging up the gaps. the water keeps coming in. all we can do is try and slow the sink, make it easy, make the last gasps of air between everything else. right now, for no rational reason that i can think of, the fucking air isn’t draining from my stoma bag. it’s filling up like a goddamn hot air balloon, meaning i need to fiddle with it and risk a bleed, and you know, i just. i just don’t even. i feel resigned, tired, frustrated, and so completely over it.

the output looks jaundiced and ill. somehow, i don’t. maybe it’s just my excessively full of carbs diet, or my otherwise … god knows what’s happening in my body happening. i don’t particularly feel like more CT scans just to be told ‘well, bad shit’s happening’ or ‘it’s hard to tell what’s happening’  or ‘well, the bloods are doing this so we’re not sure it matters what’s happening because the liver is dense and weird anyhow’ because it’s fairly clear that bad shit is happening. and more scans means more appointments means more needles means more checking. maybe there’s a drain they can put in for an errant lymph node. maybe we can just hold it all off for a bit. maybe i can just try and have some nice days where i do nice things like get that soda i like.

the medications they’ve put me on now to help with the stomarama have been a strange mixed bag. i think the steroids have helped my mood. i know the beta blockers – to slow the bleeding – have done incredible things for background anxiety, and already lowered my heart rate.  i’m still not on blood thinners, which is both nice (no needles) and anxiety provoking (what if i get a clot??!?!?!). i start chemo tablets again on wednesday. the lack of anxiety has, in a lot of ways, slowed a lot of my sense of urgency about everything, and i’m not sure how to process that – is this good, is this bad?  the bloods should indicate if i should go back on the clexane. i guess. what’s going to kill me faster? what’s winning here? Quality. Of. Life.

quality of life is such a key, and strange term. i struggle to know what quality consists of. is it me feeling like i can deal with this? is it my capacity to be able to wake up each day and see the value and the richness?  last night, in the middle of the awful, i reminded myself that, were i not going through this, my life wouldn’t actually be some perfect paradise. that sans cancer, everything in my life wouldn’t be MAGIC and GOOD. we’d still have to do the dishes, and i’d still get depression sometimes, and my partner would still go through things, and every night would not be some amazing joy filled orgy of adventure and thrills. it’s a simple thing to forget. it is also something i wonder if i do to try and minimise what is going on, in order to give myself more guilt about ‘how it could be worse’.  that perspective is fairly useless, and i know that. i guess we move it around as we need to, in order to cope and understand what we need from ourselves.  the cats are grooming each other’s faces and they are sitting on my feet, being emotionally supportive of me.  i am thinking about this, about eating pasta bake, about reading my book tonight, about going to tasmania, about things in my life with value and goodness. i do not want to just sit here thinking about the fact that my bag isn’t deflating like it is supposed to be.  quality of life,  quality of life. definitions change.

i find myself less patient at the moment, perhaps more than i have ever been. i pride myself on trying to be a patient and kind individual, but something snapped in my head about my ability to just take stuff. it is liberating.

it seems, in the course of writing this, taking a break, and wandering around, the bag is settling. quality of life.

when i was watching Grand Designs, they mentioned the guy building the house in it was 50. i got suddenly for a moment exceptionally jealous that he got to be fifty.

right now, i just want to make plans to go to tasmania and to go back to the zoo again for another zoo sleepover night where i get to stay next to a big animal and watch them sleep, or at least know they are there, and see them eat treats.  i get to make plans once we’ve talked to my surgeon tomorrow, and i get to think, then, about being alive in June.

we’re ordering my stoma supplies for June next.  so, you know. optimistic.

 

 

 

 

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the zoo! stoma bleeds! hysteria.

it has been eventful.

first of all, a content warning: Blood, and Stoma Stuff. if you are new to having a stoma, please read this taking into account that i am on blood thinners AND chemo.  i had a bad experience, which will possibly something you may, but please don’t let it freak you out.  overwhelmingly, mine has made my life better, and the reasons it’s a pain are not the stoma on its own! they have issues, they are ick, and you will have struggles, but you CAN do it – and if you aren’t in a point to be reading bad stoma experiences, please stop here.

i will be talking about bleeding as well. if that’s not a thing you are ok with, be wary.

second of all: i am aware of issues with zoos.  please be kind and let’s all leave the zoo conversation for another blog, k?

i have had this Thing booked at the Canberra Zoo where you stay in this fancy hotel room in the middle of the zoo in an animal enclosure. we got the bear! she is a rescue bear from a circus, and old and sleepy, and she likes grapes.  i have always wanted to do it; because it’s fanciful and over the top and who stays at a zoo, seriously, but it’s not cheap, but i scoffed at the cost on impulse and booked it for last night a few weeks ago, for as soon as we could get in. i really wanted to sleep near the bear.

in the morning, i had a blood transfusion. my iron’s a bit low, it’s no big deal, i get them sometimes. and the day goes on, post transfusion. i eat pasta for lunch. i read some dumb stuff online. i go to change my stoma before we leave so i don’t need to worry about it later.

.

.

and it had an arterial bleed.  not major. we aren’t talking huge amounts of blood loss – or much at all, but it spurted, and seeing blood spurt from your body – particularly a stoma which is the colour and texture of the inside of your mouth – is just this automatic ‘holy SHIT this isn’t supposed to happen’ sort of thing, and i couldn’t make it clot after 20 minutes of solid pressure. i had a complete breakdown in the bathroom, mopping blood off the floor and screaming ‘i just wanted to go to the zoo’ over and over and over again. like, this small-ish thing (it’s not a big bleed. it would have stopped probably sooner if i wasn’t in hysterics), completely broke me. i realised with this sudden huge weight that for all this time i have been carrying this feeling that what i am going through is minor compared to what i am doing to everyone else around me.

that is bullshit. it is actual legitimate bullshit i’ve been telling myself, and i don’t know why.

i expect i should pick up every piece, that i should not feel as bad about these things happening to me as when they happen to other people. i feel like that when my chemo day is delayed, or i am sick, and someone else is put out that this is worse on them, than on me. i feel like asking for lifts and getting people to help me is more of an effort and harder than the fact i’m often getting said lifts to chemo or doctors appointments or other horrible things. i focus on the fact that my crying makes other people sad, not the fact that i am crying.

but last night?  it was entirely selfish. no one else was going to give as much of a shit about the zoo thing (WHICH WAS AMAZING) as i did.  no one. this was my thing. this was something i desperately wanted to do, so badly, and this fucking bleeding falling apart worthless miserable body of mine seemed still stoic and determined to take it from me.

i called my nurse care co-ordinator with no idea what to do. i was barely able to speak, but she talked me down enough to get me to call for 000, got an ambulance whose paramedic helped me into clothes while i was sobbing naked on the floor in the bathroom and yelling about the zoo while trying to mop up blood, and got me to the hospital. my oncology team, remaining as always as people who i owe my life – not  just medically, but quality, but everything to – managed to get me seen to, triaged, and a senior ER doctor who chemically cauterised the bleed (which had pretty much slowed enough to not be an issue, but i didn’t want to take the chance), and to just let me out without waiting for blood results or anything else.  by some amazing chance, the man in the bed next to me’s brother was my last ambo (from my previous bleed) and he heard me crying while i was waiting. he bought me tissues and patted my hand while i sobbed hysterically.  i don’t know who you are, you incredible man, but i fucking owe you a chunk of my limited sanity. the kindness of strangers, of loved ones, is astounding.  i am surrounded by such huge kindness, such huge generosity. i think it’s… i get overwhelmed just wanting to give back, to give and give somehow, but i don’t know what i have other than words really to do.

i was hours late, but we got to the zoo in time to see the lioness get some food before dinner.  we went on the tour this morning. i slept near a big brown bear. i did the goddamn thing, even if i didn’t get to do the afternoon things because i was at the hospital. i won. i fucking won this goddamn round, and i will be damned if i don’t win a few more like this.  i am tough and i am stubborn. i freaked out during the dinner, and had to go stare at the fish after having an anxiety attack and needing to get to the bathroom to cry. and i ate my dinner. i kept it together through the evening, and i cried a bit, and i talked a bit to alex. and we slept a bit later, but in the middle of the night i got up, and i saw the bear sleeping  up against wall, her giant paws and my tiny hands, and i ate a mini-bar chocolate and had juice because i am really just a 10 year old with mini-bars (i love them so much for no rational reason).

the whole thing taught me a lot. i couldn’t sleep much last night – i was wired as fuck, and my brain felt like it had been fried. i disassociated in the hospital because i was so upset – my mind floated away because if i stopped to think i started to shake and almost scream with the pain of having to keep doing this, of the constant effort and stress and anxiety and sheer force of will i have to keep doing, every day, to even just stay alive. even on the days where i’m just drinking juice. on the days i go to cafes. on the ones i feel feel gratitude.  this is really really hard. people with cancer reading this?  you are permitted to feel as though this is hard on you, and that you are falling apart. you are permitted to feel that real honest truth: no one else, a lot of the time, gets it. it is bitterly isolating, and so, so lonely, and just so hard. the contact i share with my other cancer folk has been so vital for me, because the different angles on the same sorts of experiences help. but this is you. it is your body. it is you and your body. in your body. and that is something that situates you as completely alone. it is ok to feel as though this is hard.

i’m off clexane for a week. we need to sort the bleeds out. i need to sort how i take care of myself a lot better.  significantly better. i have been blaming myself and blaming myself over and over again, and no, no no. no. this has to stop. this isn’t my fault. this isn’t my fault. people care about me, and it is going to hurt, and i am going to need things from people, and that is ok because as humans we DO need things from each other, and that is what makes friendships and relationships and people better, and it is OK to want these things and i am not weak or stupid or childish to want to think about my needs now.

i want to do the zoo thing again. this time with the afternoon tour.

here are some stoma tips though, guys (obviously listen to your Stoma Professionals not me, but this is what i learned):

call your medical professionals. get them as soon as you can, and listen to them. do not be afraid to call emergency in your country. it is an emergency if there is blood spurting everywhere, and you need to get help. if you are confident you can clot it, then wait it out (my stoma nurse said) but if in doubt, call them.  you aren’t going to end up stuck in the hospital for the week after a small bleed, and if you are with palliative care, they should advocate for you to get home as soon as they have clotted/cauterised it.
it is ok to feel anxious.
it is ok to have a breakdown about something scary.
try and stay calm. don’t try and fix everything. but try and try and try and stay calm.
it is ok to feel hopeless, helpless, and like you have no idea what is going on.

there are people who will help you. they are your doctors. let them help you. i have an astonishing medical team. the melbourne move? it breaks my heart to not be able to do it. but not having to leave my oncologist and nurse care co-ordinator actually feels more important right now.

(for those interested, the zoo thing is Here)

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meaningfulness: or why i like fancy soda

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.

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The Hairy End: or, the bad shit.

i’m sorry for all the people in my life i haven’t had a chance to already talk to this about in person, and this is sort of why i’ve been quieter on social media.

but my treatment, and treatment aims have started to move into the next phase of stage IV cancer, and we’re at a point where we can start talking a timeline.  i am now, without question, terminally ill – which means, my  life expectancy is under 12 months.  for the first time, i asked my oncologist straight out for numbers, because he said that a point would come where he could start estimating. that point is now.  his ‘worst case’ estimate (all treatment failing now) is 3 months, and his ‘best case’ estimate (all treatment working for as long as would be expected) is 12 months. the reality will lie somewhere between those two figures.
it’s my birthday soon. i’ll be 32.

autumn is my favourite season.

i have hundreds of books i haven’t read, fleeces i haven’t spun, wool i haven’t knitted.

there are people in my life who i wanted to spend years with, to grow old with, to just be with.

there are all those endless things we leave unsaid, and there is so little time to say it.

i really, really loved my job, and my career, and the path my career was going on.

one day, i wanted to go to japan to go to all the places famous because Kawabata went there.

gerald murnane has an amazing archive, and i will never get to work with it or see it, or meet him.

i wanted to grow tomatoes, have pet sheep and goats.

i wanted a rescue greyhound.

maybe i could have hiked on a glacier in Iceland.

i wanted to go to all ten top restaurants in the world. i still want to do the top ten in australia. maybe i can.

how do i divide this into a bucket list or some inspirational thing about my will to live?  how do i factor this in with the fight narrative.

FIGHT. fight. fight the cancer. Fight the Battle.  Stand Up against the BATTLE.

what am i fighting for, guys? what am i actually fighting? ‘fighting’ cancer doesn’t mean i’m going to stay alive – calling what i do a fight upsets me. i can fight against the reality. i can fight against the simple knowledge of what is happening in my body, and that we only have a few limited options left as to how to stop it. i can fight and grapple and struggle and argue and say i have longer, say i will BEAT the odds.

i lose nothing, i beat nothing, i fight nothing. i have incurable terminal stage IV colorectal cancer with secondary tumours in my liver and my lungs, and other than taking the chemo i have, and doing what my doctors say, there is nothing i can do to stop this or slow this down. it is a simple and harsh and sharp and ugly fact.

one of my worries is that i will get brain secondaries, and i will lose the capacity to communicate.  bone secondaries are very, very painful, but are also unlikely to take over before the liver gives out.  same with the brain secondaries.   i am still afraid.

i am still afraid.

it’s another one of those times where i feel like i should be standing on some sort of podium listing off the inspirational things i will do, the places i will go, the achievements and the sacred moments i shall experience in my final 3-12 months. but i feel fine. how can i place the feeling of ‘i’m just a bit tired’ with ‘you have under a year to live?’

i’ll let you in on a secret. sometimes? after i’ve wiped the skin around my stoma clean, and injected myself with blood thinners, and taken my ten before bed tablets – or when i end up at the ER, yet again, because something broke in my unstable body – or when i just stare at my staircase in horror and exhaustion? there are times where i now see that there will be a point where i choose to stop treatment.  because this still only ends one day. no amount of pushing chemotherapy until the end is going to cure me.  and the whole idea that it is not fighting, or it is surrendering, or that i am on the verge of losing my battle makes me feel sick to the stomach.

this is a very different set of feelings from the initial horror and grief. it is a slower grief, a more tired grief, a grief that’s been closer to death now, and knows that i am too.

i’ve never been one to hope for that miracle. i know that it is almost definitely not coming, that the freedom from this disease isn’t going to just happen out of nowhere, out of some new drug or some new treatment.  i’ll see. i’ll see how hard it is to deal with side effects on any relevant trials, and i’ll see how much i want to take, and i’ll see what matters most to me.

there are a few things i need to write. i have three commitments i am eager to make, and open to being offered more, but i’m not sure the stress of actively pitching is going to add to my quality of life, when i can post here.  but if people reading this want me to write for them, as i would be here, i’m all there for that.

i’m flying to melbourne on thursday to look at a place. i don’t want to look at the ad too much, because i want it so desperately and the fact we might not get it is extremely painful to think about. i have to pack up my house, my objects that my hoarder brain clings to, and i need to work at shedding as many of them as possible. i need to cull things i love that i just won’t have time to use.

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overloaded and underwhelmed

 

 

sometimes i have much higher expectations of what i should be doing, compared to what i actually can do.  this is frustrating for me, and for people around me as they watch me struggle to manage basic tasks.

tomorrow it will be three weeks since surgery. it is understandable that i might be having some issues with mobility and energy. i’ve just restarted chemo – the hopefully amazing TAS-102 – and i am exhausted.  i think just generally physically and mentally and every other way exhausted.  i want a break from everything, just a few days of silence somewhere where there are trees maybe. i wish i liked camping, but camping isn’t super compatible with a stoma. and yes. i know. people with stomas can do everything people who don’t have stomas can do. i’ve seen the ads on the stoma journal and the magazines of products. the ads are remarkably like unisex tampon ads.  look at me! running on the beach! while i poop into a bag! i can run AND poop at the same time!  we’re all holding hands, sharing the experience with our fellow bag shitters, smiling in shirts that are tight, and bafflingly, not showing any sign of the bag.  life is a mystery, guys.

feeling tired is terrifying for me, because it is a reminder that my cancer has indeed progressed.  not this tiredness, maybe? but i’m lethargic at the best of times.  i miss those brief bursts of energy. i remember walking to work every day and feeling fine about it.  not counting every breath.

my fears about death are no longer irrational. they are realities i am starting to stare at the face of.  when we talk pain killers, i’m now referred to palliative care.  we discuss in depth the choices of dying at home, or dying in a hospice.  not dying of this cancer, right now, has ceased to be an option we explore because it is futile to even think about it as things currently standing.

i stare at my stoma several times a day. it is going ok, i guess, only i feel frustrated that i can’t get it perfect, and there’s still some seepage, and i’m a FAILURE at stoma-ing. which isn’t true. there are stitches around the base of it, which will dissolve when the wound has healed. i can see them slowly fading on the marks on my abdomen and pelvics where the laparoscope entered.

getting my insurance payment through was far less of a good feeling than i thought it would be.  we have the freedom to pay off debt, and to sort out cash flow sensibly. right now, we – my financial planner and i – are working with a consideration of 1 year to live.  that is a likely estimate, though it could be either more, or less, depending on my response to treatment, the growth of tumours, new ones appearing, endless tedious variables.

looking at properties in melbourne is starting to make my eyes blur a little.  normally i love that sort of thing, but today, i stayed in bed eating easter eggs and ginger bread until i felt slightly ill. i ate a pear. i need to gain weight, badly.  i didn’t eat solid food for a week, so it sort of makes sense that i’m struggling to keep weight on.  i’m on one appetite stimulant, about to start a second, and then there’s a third we can try after it.

there comes a part in everyone with a ‘life limiting’ (god, i dunno if i hate that term or not) illness where you start questioning just how much more you can take. this isn’t depression talking – i discussed it openly with my doctors, and i know very well what depression feels like and this ain’t it.  i am tired of the ER visits and the fevers and the exhaustion and the nightly injections  timed to hurt as little as possibly on my thighs covered in bruises, and trying to manage the bag of shit that hangs from my belly. i can feel it against my thigh during the day, but it is small and ugly.

it is six months since i was in iceland.  it feels like less, and more. as i know, more and more, that overseas travel – that trip i was planning and costing – is no longer an option right now, the more i cling to it, all the little things like dragging my bag that weighed too much through the streets of Vik, of this fae young man with pristine english who served us in a restaurant in Reykjavik, where we asked, slightly drunk, for ‘the most icelandic cocktails you could do.’ of walking on the beach until my feet ached and never wanting to stop walking, the edge of this strange dark sea, the black pillars rising out of the water. of the way things and places smelt – the intensity of the sulphur, the smell of clean clothes after we had a stack of washing done in Reykjavik, of the smell of water in Myvatn after stumbling over a moss soaked lava field.  i don’t know, i’m trying to find things to say about my body in the landscape there, of those crisp hills that you never escape with waterfall after waterfall, the slightly different colour of the glacial rivers, the edge of the glacier i could see from Vik which has somehow taken on almost occult status in my mind.
and there is always more that comes with these memories, more and more, those conspicuous gaps i leave from my blog because i rarely involve other people in it, or i am careful when i do, because  i am careful by nature. but i am left reeling by what i have and will continue to lose, and how loss is not something i can hide from, or run from, or pretend is anything other than an inevitability.

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glacial stream, Vik

i feel gaunt right now. i’ve lost more weight, and my wrists look fragile, and all of me looks breakable. my cheekbones are stark, and my eyes are looking slightly too large for my face under my glasses.

i am having a lot of trouble not crying all the time. there is a lot of grief right now.  there is a lot of grief and all i can pull together is crying, and i can’t evenwater my plants right now.

 

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well, i shit in a bag now.

i got out of hospital on saturday, with my new, exception accessory: a colostomy.  essentially, the doctors went in with keyhole (thanks guys), yanked some bowel to the surface, did some cutting, and sewed the bowel to my skin, slightly below my navel, to the left.  poop comes out. it’s… it’s an experience.  i’m getting used to it, i guess. i’m not yet excellent at the intricacies of bag changing, or of managing the skin around the site. it’s messy. it’s a level of gross that i’m not going to post pictures of, because, well. it’s not just poo as an abstract, it’s dealing with it in a very different way. i could talk a lot about the nature of the abject, and controlling the uncontrolled through intervention.

the tumour couldn’t be removed. essentially, it will make no impact on my life expectancy, as we’re in a race against time with the tumours in my liver.

it is invasive.  it is confronting.  it is unavoidable.  i will adjust to it – a lot of people have stomas, live normal lives. i’ve been told that a lot.  i guess what i struggle with it that this stoma didn’t save my life, really. i mean, in one sense it did – a bowel obstruction would have killed me –  but the intended outcome of this wasn’t to rid my body of cancer like we first thought it would be – it is to put another plug into the leaking boat that is my body.

this is a metaphor i used on facebook, and i think it is apt.  and as time goes on, there is more leaking, more water flooding in.

the surgery, this time, was an emergency.  there was a wait to plan it, but there was a short one. i was on a liquid diet for over a week, and i had two blood transfusions, four plasma transfusions, one platelet infusion, and an injection in my upper thigh to stimulate bone marrow production of white blood cells (you cannot transfuse white blood cells, i think?). plugging up those little gaps, as fast as we could. i was on antibiotics from when i first entered hospital, my maintanence pain killer is fentanyl, and i got through it surprisingly well. the surgeon said the day after, ‘wow, you look much better than i expected you would.’

this was reassuring.

we – alex and i – are almost definitely going to move to melbourne.  this is a bitterly difficult decision. i love my medical team here – i feel sick every time i think of changing oncologists after a year and a half building the relationship i have.  i love my suburb, but there’s simply no way at all that we can stay here – financially. melbourne? we can be in nice places, close to cafes and the beautiful public transport. there is support there.

one of the things that is most important to me sounds trite. but a few months before i was diagnosed, my best friend told me his partner was pregnant. i cannot even describe how i was excited for them – for the world – to have this little piece of beauty, from two of the most incredible people i’ve ever met. it kept me feeling upbeat some days during treatment when everything else was complete and utter misery. i got to see them both just before treatment, when i didn’t know if i would ever see them again, if i would live to go to melbourne one more time. and one of the most bitter things i realised was that i would never get to see their child grow up. no first day at school photos. no graduating from primary school. no chance to be an adult who spends time with a child – an aunty of sorts.  it was robbed of me.  if i move to melbourne, i don’t get that back. i don’t live long enough to see her start school. but i get to see her toddle around, i get to read her books, i get to have long talks with lachlan and liza about the world and everything, we can get hotdogs and eat treats, i can go do the park with them. i get to spend time with Dom, who i’ve mentioned before. and i feel desperately sad to be leaving my loved ones in canberra -which i’ll write about in another post, but i just.. i feel like i need to do this. alex also wants to do it – she’s a native canberran and every canberran comes to a place where they need to move (in my own personal world view and experience).

and i think about that, and i think about my other friends in melbourne, and i think of how i’ve always wanted to live there, and this is a thing, a little thing on my list of stuff i want to experience, that i can experience now. i get this chance to live somewhere else – to live in a third city, and get to know what it’s like there. brisbane, canberra, melbourne. it feels good to me.

there are the trivial things like coffee shops and cinemas and music and bookshops, which aren’t really that trivial when you know that clock is ticking. i get some sort of joy out of these things. new restaurants and completely bonkers food items in the morning. a courtyard with the fig tree from alex’s parents’ house in canberra that had to be knocked down.  a garage for alex to work on her bikes.  you know, these things are good. we are incredibly lucky that i can do these things, that these are dreams i get to see.  maybe i never would have done these things without cancer.  i don’t know – no, i really don’t think it makes cancer worthwhile. i can’t think of anything that does.

when people say everything happens for a reason, and that i have grown from this, i feel white hot fury on behalf of every other person who has passed away from cancer. i feel this from my gut, for my friend who passed away recently and i still feel too… too much… to write about it.  there was no reason. fuck the reason.  there is no reason behind any of this, and anyone trying to tell me that my body falling to pieces, one chunk at a time, one blood test after another, one huge bruise followed by more injections, followed by waiting for the scans to show it’s grown, it’s spread — that there is a reason behind this, i despair of whatever monster feels that putting people through this is just, or reasonable.  i understand that some people need that reason – need to think that there is some sense in the universe, and i respect that, but you know, right now, as i wait to take a bag of shit off my abdomen, take a bundle of pills, reattach a fentanyl patch, and inject myself in the thigh with a blood thinner, each shoved in, trying to forget that the ship is sinking, it’s hard for me to accept any kind of magical thinking that makes this reasonable.

this isn’t an opening for a theological discussion guys. if i want one, i’ll approach you, k?

 

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Hospitals: or, will i ever leave this room again….

 

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last week i was admitted to hospital with a really high temperature — suspected infection, abdominal pain & really low blood pressure.  the day before that, i’d had a colonoscopy that showed my primary tumour had grown significantly, and i needed surgery.

given the timing? i was kept in.

this is one of my longer hospital stays. i’m on fluids only, and i am so hungry i feel like i could consume my own arm/leg/body whole.  i’m in a different hospital to my normal one, and it’s luxurious compared to the cancer ward i have been in, in the past. i’ve been chilling out in the surgical ward, blood test after blood test, blood pressure always being checked for another drop.  i can’t leave the room due to my white blood count, and most of the time, people are only allowed in while suited up in infectious disease protocols to stop me getting sick. everyone has been very stylish.

this has been survivable because of the friends & family who’ve visited. Alex, and my friend Fi, have been here almost every day, and phone calls from family and friends.  i have a line up of toys and flowers and chocolate and a poster of morrissey for my wall.  people touching in to let me know they are thinking of me – a pile of magazines including The Believer (which i am ALWAYS meaning to buy/read). people: when your friends are in hospital, let them know you care, because it’s one of the only things that consistently leads to sanity and a feeling of safety and value. i feel very very valued right now.

my medical teams are … there’s a lot of them. but today, i started a process which is difficult but important for me: i have met up with and made plans with the palliative care team in the ACT.

there is no cure. there is no point past which i will not have cancer. i will die of this disease.  i know i’ve said this before, but nothing is more clear than when you see that paperwork moving you over to palliation from just oncology. and it means hard conversations.

we started with discussing my ongoing issues around pain management, and how i need to learn to be better at admitting when i am in pain, and dealing with it with Pain Killers. any other way of handling it is not just stupid and childish, it is bad for my health. they were much more diplomatic, but that’s the case. i was putting alex through hell by letting myself be in that much pain, rather than accept that i need some help.

but there’s one problem we’ve had since i was diagnosed.

our apartment.

 

i love it. i love it so much. and it is up three flights of stairs, and it is not suited to someone who will need mobility access. we have to move.

we’re looking into how to do this, when we will (soonish) and the logistics. it breaks my heart to do it, utterly, but there’s not really an alternative.  we are starting to look, and starting conversations about what we can do to make this happen. this time, we need a garage. alex made a stack of concessions for me, and it is my turn to make sure that our new place is what she needs. and it needs to be on the ground floor. i have this little fantasy of having a courtyard, of an enclosed run for the cats. i’m thinking about ways that we can make a new home as loved and comfortable as the one we have. and i think about how much i love my space, and struggle there too because of the diagnosis, and i almost feel relieved that now, we’ll start again.  and i will miss our little weird apartment so, so much.

i hate moving though. that’s going to be the hard part. but we need to do this, and we need to do this before my mobility is compromised.

my surgery, by the way, is on friday. they don’t think they can remove the tumour, so it will remain in there. they are giving me a colectomy – which results in a stoma, and a colostomy bag.  my bowel will bypass my rectum and anus, and i’ll be shitting into a bag for the rest of my life. i was so scared – cripplingly terrified that this would one day be what i had to face. now, i am facing it. now, i think i am ok.  i am not happy about it. but if it relieves the pain, i more than accept it. it will be an adjustment. it will be a change. and my life has been a constant ring of changes, one after another, hopping in and out of them, wading in the darkness.

i think this is something i will write about once i’ve done it. right now, i am frightened. i feel like the fear is under control, and the fear is something i am managing, but a part of that is admitting the fear. and regardless, keeping on going.

right now, i’m mostly hungry.
Burger (beetroot, pineapple needed)
chippies
pizza
buffalo wings with blue cheese dressing
thai green curry with tofu and vegetables
thai red curry with duck and lychee
fried chicken
honey chicken
steak
pasta. pasta. pasta. like, the best fresh pasta from the markets. home made sauce.
cheese. cheese for the pasta. hard cheese. the ODO cheese from Bruny Island.
salad sandwich.
sausage in bread, with tomato sauce.

it’s savory i’m craving. i am eating so much solid food when this is over.

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