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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pain and other stories: listen to your doctor

the last few weeks have been a challenging and hard, both mentally and physically – and on myself and other people.

there’s something… wrong… with my bowel.  what, we don’t know. we’ll know soon enough, but in the mean time, the pain is actually exceptionally hard to deal with.

one of the consistent features of advanced cancer is pain. i operated under some misguided illusion  that i’d escape that. i don’t know why i presumed that i wouldn’t end up layered and coated and shuddering under aching constant pain – or that i wouldn’t need help managing it. my high pain tolerance is something i have a weird sense of pride in. it is idiotic to take pride in a high level of pain tolerance.

so i had two ER trips – one in an ambulance – in a week.  i was being exceptionally foolish,  both times – because i didn’t take even endone, or even goddamn panadol for the first trip, and the second time, i’d gone 24 hours between targin (oxycontin) doses.  i realised the second time i was there that there was nothing the hospital could do for me, other than inject me with pain killers. the tests and the consultations and the investigation into the cause, and methods of managing my pain, are outside of the scope of a busy ER. we left, exhausted and frustrated, and i was angry at myself for failing to understand what i was supposed to do in these situations.

my nurse gave me a kind, but very firm reminder after the second ER visit where i called her that i actually need to include the targin in my daily medication routine.  as well as laxatives, two anti-psychotics (one for appetite stimulation), reflux medication, buscopan (it relaxes your bowel), and currently, my chemo drugs.  fortunately, i have no issues taking handfuls of pills. i can do it in my sleep.

the pain has shifted now, into a low level buzz below my ribcage. it is quiet and keeps flowing, but i’m not moved by it. i don’t fight with it now, because it is slow and gentle.  i don’t feel pain in the same sort of way. it still hurts, but i don’t wince.  the first two days were uncomfortable – several of the drugs are heavily sedating, and that’s deeply unpleasant and disarming. i’m shifting into a space where i’m able to stay awake all day, and focus enough to write again (see! blog post! proof of being able to string some words into a larger number of words next to each other in little blocks!). and even when it’s bad, it is still ok? i can live with it? my body feels it – the sweating and shakiness, the lightheaded feelings, but the pain is abstracted. it’s very, very odd.

i think it’s been one of the only communication slip ups i’ve had with my medical team – where i didn’t actually understand how i had to manage the pain.  that painkillers were not some optional thing i threw in when it got bad. they are something i take as standard, because my quality of life will rapidly diminish if i don’t act responsibly with frequent, stable use of opiates.  i won’t be able to finish meals, enjoy my life, or think clearly.  the opiate haze? it is infinitely better than the pain haze. there’s so much conversation about how addictive they are, and somehow that gets absorbed into how i feel about taking them.  a lot of those conversations strike me now as being both deeply offensive and ignorant to people with substance abuse disorders, and people in chronic pain.  i didn’t realise i needed pain killers, and i felt weak and pitiful when i realised i needed to ask for them in order to keep the pain at a managed level.

i’ve written elsewhere about my complicated relationship with pain – the higher tolerance, my interest in it. but this is another, new playing field i’m working with now, and i am curious to see where it goes in how i conceptualise my body and sensations.

the important lesson also is that when i don’t help myself, i don’t help the other people around me. it is my responsibility to do what my doctors tell me. if i am not sure, i need to ask for clarity. i need to know that we’re all on the same page and following the same course to make my body something i can comfortably inhabit.

 

i think i resisted the daily pain killers because severe pain requiring daily opiate means bad things. i have a bad feeling guys, a bad bad feeling about what’s happening in my body right now, and we’ll all only know after tomorrow. i’m getting ready for colonoscopy prep – a nasty 48 hours of drinking vile tasting liquids and living off white coloured food then liquid.  but i also know it’s only 48 hours before it’s over and by wednesday, this week, we’ll know. and you know, if it is bad, i deal with it.  there’s not much more i can do. i could spend this weekend crying, or terrified but right now, i just feel resigned and quiet. it’s probably the antipsychotics.

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the next step: an update

on thursday, i got incredibly good news. a new chemotherapy – called TAS-102 –  is available for me to try, on compassionate grounds. it’s not yet available in australia, but we are accessing it directly from the pharma company.  it is a tablet with remarkably few side effects for a chemotherapy, and will give me, hopefully, some months of freedom to use my time far more flexibly – with no hospital visits, less side effects, two full weeks off treatment in a row.

but:

honesty time. after a discussion with my oncologist, i’ve decided to claim terminal illness benefits – my life insurance, plus my superannuation paid out.  my care has been palliate for some time, and in all honesty, no one knows how long i have.  but essentially, saying i have a year or less is no longer a remote possibility. it is a real one.

he suggested claiming it now, and using the money while i am still able to enjoy it.

i guess this is a complicated thing to deal with. on one hand, i am legitimately excited about the freedom financially that this payout will afford us. it is significant.  i am excited about travel, and i am excited about getting it sorted out, and on the road as soon as possible. there is a strange desperation to it; to everything now.  my oncologist is exceptional – honest, forthright and also extremely kind. and i know he doesn’t hesitate to be honest with me, and to take what i want – quality of life in the context of the reality that i will die soon, no matter what we do – unless something in treatment terms changes the game remarkably fast – into account. i appreciate his honesty more than i can say, and knowing that we are on the same page in terms of both my long and short term medical needs makes me feel safe. and it is hard to feel safe in this situation.

but all of this has also triggered – in a neither positive, nor negative way – the urgent need to look at my priorities for the rest of my life. what is it that matters to me? who, and what, enriches my life? who do i know will value my time, and make me feel valued? how do i want to spend this borrowed time? what do i need to do to fill this as well as possible? make it glorious. burn out like the sun until i fade away. fucking burn the world down while i can.

there are things i want to do, and i cannot do all of them. but there are the things i can do. and i need to make a list, and stare at it, and stare into the ocean, and fucking think and think about this, and make the choices.

 

a friend of mine died recently. i am not yet ready to write about it.

 

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melancholia

i don’t think i’m depressed right now. i think essentially what’s wrong is the radiation breaking down the tumours. radiation and i don’t agree with each other. nor does my cancer, so, it’s a sum gain but right now every bone in my body just feels like i’m losing out. i’m not overwhelmed with the ‘not worth it’ feelings like i have been at times since the SIRT went in.  but i’m tired.

tiredness doesn’t exactly depress me. i know what depression feels like, and this isn’t it. it isn’t has heavy; it’s just this sinking feeling of insecurities and worries. i’ve written about it before, and i never know if the best thing to do is to tackle them, or to wait until the feelings pass. is this a reflection of things that are upsetting me, or it is just my brain turning on itself?  i don’t have energy, and i am naturally bad at a lot of stuff, and i am afraid of things, afraid of being forgotten, of being lost, while managing actual life that exists outside the narrow confines of the intensity of my neurosis.

i’m listening to Of Monsters and Men a lot, an Icelandic band.  i haven’t written in detail about my trip; i’m working on a fairly academic article about it right now, but the personal sorts of moments i find hard to place into words.  Of Monsters and Men talk about the sea a lot, and about the darkness. i guess in a place with a midnight sun, and entire days with almost no light, darkness and water matter.  my dream to run away to a fishing village in Iceland, knitting socks and staring at the ocean cements now in the reality of having been in small coastal villages there.  it is this melancholy and beautiful place of safety for me when i feel like this, at the same time as mingled in with that fear of mortality; that fear that these places are now ticked off, places i’ll never see again, the last chance.  they also sing a lot about lungs, and breathing. i just want to keep breathing. i just desperately want that and i don’t know some days how optimistic i can be about the liminal numbers that flip around my lifespan, the realistic understanding of what my body can put up with. the median survival for stage IV colorectal cancer is 29 months.  i am at 18.

the idea of the last chance terrifies me.  the last anything. i’ve spoken about this with a friend – the idea of somehow knowing the last time we’ll ever see someone, or do something, or go somewhere.  there are places i’ve been in that were monumental in my life that i’ll never enter again; old apartments that i’ve lived in, that people in my life have lived in. that moment, that space, those things. i remember how all these places in my life smell – that is the main memory i have of anything because i have such a strangely acute sense of smell. smells sort of fill my head, and i feel as though they are falling into me.  overheated brisbane sharehouses with no back doors and possums in the kitchen, comfortable velvet couches and stolen paste up posters on the wall, my cramped and filthy room on Bowen Tce, the tiny room i inhabited in canberra for years, barely able to walk on either side of the bed: a space filled with such a heady collection of emotions and memories i can’t even place them in any sort of order. they are slides in my failing memory bank.

i don’t want to think i’ll never stand on that black sand beach again. i want to entertain a fantasy of going to Iceland in winter next year, of walking through a cave in a glacier. of standing in that whiteness, of being obliterated out of the frame with that white noise.  i don’t want to think that this time in my life is now nothing more than a series of memories, that nothing of this continues on, and that i am here now, away from it all, away from those moments stolen and suspended outside every aspect of the life i live and inhabit in reality.  i know, as a realistic human being, that i probably won’t. that when my doctors tell me to do the things i want to do now, it is because there’s not some mythical future ahead of me where i get to do world tours, and see Japan, or Spain, or southern France, or Poland, or Iran (seriously read about travelling to Iran; it sounds breathtaking).

i want to go to Chernobyl because i have this intense terror of nuclear weapons and i am strangely attracted to the places that i fear most.  i shy away from them and i am drawn towards them in equal intensity which often renders me useless and silent and unable to plan. i want to go into those ice caves in Iceland the most, though, and i want to see what it is to travel in a country where it is almost always dim.  i want to see those impossible skies and impossible colours.

and i feel selfish for this, like i want to consume more than i deserve to, more than i am lucky enough to have achieved.  i want more, i want more life, i want more substance. i want to somehow fit this into these finite terms that aren’t in any sort of dark felt tip pen, but are shifting constantly, the boundaries and plans forever changing, destabilised.  i want to pull off all those figs from Plath’s fig tree and i want to gorge on them until i am ill, because what is illness in my context?

and i am going to be a ghost, you know, a ghost, and i will be a series of memories like that slideshow of every apartment i’ve been in that has shifted my life in some way. i am that slideshow, and i will be those fragmented recollections of someone else’s life, and where i fitted into that narrative, and how the memories of me will fit in there too. that doesn’t make my death less substantial to me. it contextualises it thought. i will be the moments that people spent with me, the ones they remember, the ones they half hold onto, the ones they are unsure if it was me or someone else telling them that story. i’ll be that fading image of a skinny little thing with oversized glasses and bird tattoos and, the memories that come with my life now, and the world that’s yet to come as my cancer takes the energy to survive that the rest of my body needs.

i feel selfish wanting anything i want. i feel selfish that i want to go back to Iceland, i feel selfish for every relationship i want, and for whatever it is i want, even when i don’t know what it is that i want.  and i don’t even know how rational i am right now, because of the radiation and the exhaustion.

but look at the at picture. what does a set of numbers, median survivals, or five year survivals or anything like that, mean? the fact i want to go back there and lie on the steps on the church on the hillside staring at the sky, or stumbling over moss covered volcanic fields, or crawling through ice, my hands prickled from nerve damage, my leg bleeding, and so, so alive.

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Medical Procedures Reviewed With Elizabeth: Angiograms! MAA radiation!

I like to review my gross medical procedures because i am made of fun.

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here is a pretty much unrelated image of my fig tree. on my balcony.

SO. yesterday, i had an angiogram as a ‘work up’ for the implantation of Sirtex Spheres into my liver.  late last week was spectacularly fun, with an emergency CT scan in response to a rapid rise in my tumour markers.  CT scan illustrated that, confusingly and excellently, there was no evidence of any growth in any of my tumours, or additional mets.  so, go figure.  thanks body, you weird sack of cancer and goo.

angiograms are in the long list of medical procedures that ick me out a bit.  they cut open your groin after a really goddamn painful local anaesthetic and shove a cannula/THING of some sort up the artery and into the organ being stared out. in this case, my liver. they flooded my liver first with contrast, to illustrate that, despite my spectacular cancer load, the arteries and veins in my liver are in great shape and easy to locate where they feed into the tumours, minus the perpetually miserable Sector 1 Tumour of DOOM that is still the reason behind my lack of resection.  they couldn’t work out the blood flow. why is it such a weird tumour? no one knows.  anyhow.

they then pump in radiation, and take you over for another scan.  due to my level of terror, they kindly gave me sedation, and after about 20 seconds of terror, i could no longer focus my eyes and just stared off into space, going to my happy place; or, more realistically, the blank place in my mind which i go to when i’m pumped with sedation.  i don’t overly enjoy the sensation, but it’s exceedingly helpful while they are feeding a tube into your liver and flooding it with contrast.

the nice doctor pal then pressed into my groin for about ten minutes to stop the artery bleeding. blood got everywhere.  it was pretty gross. medical procedures are gross. i sometimes wish i could be all like, ‘and then i looked spectacularly sexy and strolled off into the night, eyes ablaze with promise of what the future holds and of my own greatness. I hold my successes in one hand, and the promise of a beautiful future in the other, sharp witted and young and free….’ but the more realistic outcome is, ‘i look pale and kinda gross with mild acne due to being post menopausal and my hair’s a bit of a mess, and i’m walking weirdly because someone shoved a cannula into my groin.’

maybe, one day, i’ll have a sexy medical procedure to cover in my upcoming breakthrough literary piece titled Sexy Feminist Cancer.

 

MY LIFE IS FUN.

i then ended up with some exotic fevers last night, spent a hellish 4 hours in an overcrowded and dreadfully understaffed ER, and got sent home as soon as someone had the time to call my oncologist.  this is NOT the fault of the exceptional staff who spend the whole time working hard to provide as much care as they could with the limited resources they had. but there was no way they could fulfil quotas in a situation like that, with ill people shoved into corridors and large supply areas with chairs and beds in them.  it made me ashamed of whatever has lead to this, and angry that the medical professionals dedicating their lives to saving ours are forced to go through it. if you end up at an ER and are stuck for hours because of this, never blame the doctors or the nurses, even if they are short with you. their life – their time – is all based around saving and making yours better. be nice to them. (obviously if they are offensive or abusive, report it – but i’m fortunately yet to experience anything close to that. i have witnessed countless examples of people abusing nurses though….)

so, next week, i get the ‘real’ radiation. i am obviously fairly nervous, as the primary side effect is nausea. i hate nausea. and exhaustion. exhaustion makes me an exceptionally unhappy camper.

it’s a strange procedure to be entering into, because it’s one of the main markers of the definite fact that my treatment is no longer curative, and it is without a doubt palliative.  my oncologist has decided to not operate on my tiny, asymptomatic bowel tumour (which has no active cancer it it according to my last PET, and no active cancer in any lymph node in the region). They’ll deal with it if it starts causing problems, but given it wasn’t at the point of diagnosis, it seems unlikely it will for my life span.  The lung ‘things’ are still there, and not going anywhere – either bigger or smaller – so i’m being encouraged to forget about them.  Onc said that they will remain asymptomatic unless they grow about 10 times larger. ok. that tight chestedness? it’s anxiety. now i know this i don’t feel tight chested. but it’s not curative.  i think palliative remains a terrifying word, a huge word, and it’s something we need to look at more – those of us receiving palliative treatment for advanced cancer/diseases.  i’ve started writing for a palliative care blog, and i feel like it’s one of the more important places i’ve had writing in.  i feel like i can actually contribute some important ideas about how it is to live with a Terminal-Ish/Life Limiting/Whatever diagnosis.

i’m also facing a lot of interesting questions about my own writing practice that i’m working through at the moment — namely, how do i deal with the fact that i can write about the intimacy of the body, but struggle to articulate anything relating to the intimacy of personal relationships.  i tried to write a piece – a deeply personal piece – and it was hesitant and unclear, and i have no idea how to sharpen it, or make it something that is readable, and meaningful.  how do i write about how i feel? how do i conceptualise it?  this is a part of the exposure of the self in the kind of writing i do that i’m not sure how to manage.  do i stay with what i know, and what i can say about my own body, my own concept of self, or do i try and push myself into writing about the things that frighten me, that matter to me, and that i find so hard to say? it’s a question i’m not ready to answer yet.

also, my balcony garden is going great guns, with my two fig trees growing huge, a stack of zaatar cuttings, and some baby succulents. if anyone in canberra feels like trading succulents, hit me up, yo.

 

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Vale little bun

 

my little rabbit Wee Noog Gruggles​ who i referred to largely as ‘little bun’ had to be put to sleep yesterday.

he was almost 8, and he was pretty tired, and had a few complicated things wrong with him, and with discussion with his vets (who he’s been seeing since he was a TINY kitten), we decided it was the right thing to do for him.

he slept in my bed for awhile, before he started pooping in it (many of you knew this story). he loved ripping up newspaper with his front legs and teeth. he liked hopping around slowly, and eating dead leaves in the park because grass confused him. he was never particularly robust – i always joked that he was Just Like Me, because lots of things that should have killed him didn’t. but he kept trucking on, despite the abscess, the endless respiratory infections, the flystrike, and the calcified bladder.

he liked head pats and grooming people on their arms enthusiastically. he would happily lie on his back for cuddles. he was probably the most relaxed rabbit i’ve ever encountered – particularly from a backyard bred cashmere lop. he had the longest, silliest hair, and funny little ears, and always seemed a bit confused. he liked parsley, and strawberries, and kale, and straw, but was never heaps into food.

i miss seeing his little face when i wake up in the morning, when i come home, before i go to bed at night, when i’m hanging out around the apartment. i miss his weird aggression when you tried to take stuff out of his cage. i miss his weird little snuffling sounds, and his fuzzy hair. i also know i made the right decision. he had this pinecone for several years that he’d carry around in his mouth. goddamn he loved that pinecone. he had a little treat ball too – no interest in the treats, but he’d throw the ball around, and put it in his food bowl, and take it out. he’d do weird things, like eat plastic, or try and eat cat food. no cat food, little bun! it’s not food for you!

people might think i’m dotty for being this attached to a rabbit. for getting him vaccinated on time, for having surgery for his abscess, for the time we had to give him fluids through a drip for a few weeks, for the fact i took him for walks when he was younger.  people make stupid jokes about eating pet rabbits, or are kinda dismissive of them, like they are not a cat or a dog.  i lived with this little guy in my bedroom for two years. he got me through breakups, and breakdowns, and severe depressions, and psychotic breaks.  he was there with me through all of that, his sweet face, his insistent desire for head pats, his little groomies when you patted him and he would pat you, the hours i’d spend brushing his long coat, and the fact that a lot of other people got to spend time with him and love him too. he was a special fella.

i always worried i wasn’t a good enough rabbit owner. that i didn’t play with them enough, that i stopped taking them out for walks, that i didn’t take them to the vet in time.  big bun is 8 years old next month, and STRONG LIKE OX. little bun was always the frail one, the delicate one, the gentle little sweetheart.  but the vets told me i was good, that i did good, and that i let him go at the right time.

sleep well, little dude.  he was one of my best friends.

 

 

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scanxiety: a response to Anna Spargo-Ryan’s ‘Head First’

first of all, if you don’t read Anna’s blog – which is HERE – you should. she’s one of my favourite young australian writers, and speaks incredibly insightfully on mental health issues, and writes beautiful, moving, and sharply written personal essays that i always look forward to.

the also excellent journal Seizure recently published an essay she wrote on getting an MRI – or, as the case may be, the difficulties of getting scans.  you can – and should – read it HERE.

there are a things in it that particularly spoke to me. A lot struck me about the contrasts i have in experiences of Before Cancer (BC) and After Diagnosis (AD). (i am funny).  because before diagnosis? it is one of the most on the ball things i have ever read about scans. and in the land after cancer, everything is different. what i write here isn’t polished, cause i’m blog ranting. soz.

“The ability to pick and choose medical testing is reserved for people who are mostly able and mostly middle-class. It cost me $400 to spend eight minutes in the specialist’s office. It cost another $450 to not have an MRI.  This kind of testing is a privilege awarded to those who don’t need it. It’s a clarification of the things that aren’t wrong, a way of finding out how well you are, not how sick. For me, medical testing has been for reassurance, not diagnosis. Ruling things out, not in.”

THIS.  THIS.

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this is what i like to call my morning cocktail on CT days. it’s lemon flavoured iodine that tastes fucking revolting. i need to drink a litre in 45 minutes every 6 weeks.

from my experience as a chronic scan-getter prior to cancer, the experience is very different. i’ve had about 4 brain MRI’s – two from head injuries, and two to rule out tumours in relation to various stages of my bipolar diagnosis.  three of these were in hospitals, so we didn’t pay a cent.  one got bulk billed. these were still aimed at ruling out something they were sure i didn’t have – there was no evidence of a brain injury for my first MRI. i remember it vividly – a 14 year old lying back on that bench, staring into that red light when i briefly opened my eyes before squeezing them closed again. i prayed, desperately, that i didn’t have a tumour (they weren’t even checking for one, i was just fixated on thinking i had a brain tumour when i was a teenager). i begged God, saying i would never swear again if i never had a tumour. i’m not sure why i thought God would care so much about that small fact. i’d never had a cannula at this point in my life, and i was so so scared of them.

i thought, up until when i was 29, that cannulas were a needle in your arm, metal and sharp, and if you moved your arm the needle would go right through all the other bits in your arm or hand.  this is wrong.  they pull out the needle and feed through a small plastic tube.  it’s fine.

the scan was clear. in fact, all any MRI has illustrated was excess fluid in  my hippocampus & some excess white stuff somewhere, which there seem to be links with psychotic illnesses.

after that, i’d had several ultrasounds for various ailments i was convinced i had. all clear. i had to wait a few weeks to get them, because it’s no big deal and a few weeks don’t matter.

when i had the scan that located the cancer, it was one of those sorts of scans that Anna described above. my GP was sure i was fine, but i wanted to check my gallbladder. i had a referral to a gastro-intestinal doctor in three months, because of waiting times.  i waited three weeks for the ultrasound.

And after this:
everything changes.  scans are no longer these things you need to wait for, or book. those waiting times? the months to see a specialist? that ends. Stage IV cancer is a new world, a new universe to navigate.  those scans on one level are for the able and the middle class, but when you cross into the SERIOUS DISEASE THAT WILL KILL YOU, nothing is the same.  after they found the tumours, my three month appointment was moved to the next day. after they found them on the ultrasound, i had an emergency CT as soon as i’d been hydrated enough to cannulate.  i had two MRI’s with no wait time – the day after i called, and a PET scan – which normally takes months to schedule, within a day of the appointment being made. i saw. after each scan became stranger, more ambiguous, and more likely to be cancer, my two-weeks-away specialist appointment moves forward to the next day. a few weeks matter. a day matters. it is a knife edge and each fucking moment counts, because they need to get the chemotherapy into me, and they need to see if they can cut it out, and they need to hunt down every single fragment of cancer.

and you know what? abdominal MRI’s are not covered by any sort of health care fund.  i had to pay $1500 out of pocket for three of them.  my specialists were $400 a session. and then diagnosis, and i am shuffled, high priority into the public system – or treated as a public patient by private doctors, because kindness? pity? empathy? the only colorectal specialist oncologist in the ACT is public, and there is no private chemotherapy for most cancer patients, and the public cancer hospital here is better than any of the private options. this is often the case for cancer – Peter Mac, the cancer only hospital in Melbourne which i wish i had the money to move to melbourne to be treated at – is public. money is a large part of all of this.

i have no idea how other patients of chronic illnesses go. or even cancer patients who are not stage IV and 30. from what i know, it is slower? i have heard of a lot of waiting, a lot of pauses. but scans become another thing. they are not a strange sort of reassurance (like when i thought i had a tumour on my thyroid).  they are terrifying.  it’s scanxiety, which sounds naff, but makes more sense than any other term.  the shift in how you get scanned and checked is monumental.  x-rays every time i show up at the hospital with a fever.  a progress CT scan every 6-8 weeks. and progress means ‘has the cancer progressed?’ what is crawling in me? what marks these things out? the scans are a map, an ugly map of my shattered tumour filled body.  they revolt me.  we keep them out of reach. i never touch the reports. and i cannot escape them.

one time at the ER, the doctor said she preferred not to give people my age many CT scans. and then she paused and said ‘well, but in your circumstance…’ and trailed off. i finished for her ‘yeah, i won’t live long enough to get breast or uterine cancer from them, pretty much,’ and she sheepishly nodded.  radiation over my body. radiation in my veins. radiation aimed at the tattoos on my hips and on my pubic bone.  people make glowing in the dark jokes. i wish i could.

Not to labour the point. Anxiety feels like dying.

Anna talks about the lack of seriousness about anxiety in ER’s. that they see it, and you are pushed aside.  and it is so true. i remember the wonder of the being pushed aside and those chest pains ignored. the fact that my right side always felt tight, and i was convinced i had lung cancer. HAHAH no, no, you’re anxious. i wasn’t anxious. i had so many liver tumours that my liver was stretching every muscle in the area and compressing my lung.

another rapid shift. i have an anxiety disorder.  the seroquel and various piles of white and yellow tablets keep it down, but at the moment, it’s roaring.

and again now, showing up with mental illness & a trackable illness, CANCERRRRR, which is quantifiable on scans: it shifts.

right now: i feel like there is a vice wrapped around my chest. every time i inhale, i feel like there is not enough air, and that my lungs are filling with fluid and blood and that i am dying. so i try harder to gasp for air, and i can’t fill them, and i get tighter and tighter. my throat starts feeling like there is a rope wrapped around it, pulling tighter and tighter, and the air is shrinking. i can’t breathe. i can’t fucking breathe.  and the more i think about it the worse it gets until i am gasping and shaking.

i know this is anxiety but if i called my doctors, i’d probably be told go into the ER. and if i presented with that, i’d be quickly moved, triaged first, and my chest would be x-rayed and my heart mapped on a 12 lead. i’ve had anxiety related palpitations which have had me calling an after hours nurse, who as soon as i described it, put me onto 000 for an ambulance to come. i was carried on a stretcher down three flights of stairs because my heart was thundering in my chest. because i was frightened of my body.  there was nothing wrong with my heart. i was just afraid, and felt like i was dying.

chemotherapy affects muscles and thus, heart tissue. it can cause heart attacks. i have, according to my last scan,’ innumerable’ small nodules in my lungs. one is a bit under a cm.  they are in the lower part of my lungs, and there is no escaping them. i am petrified of them – of the oxygen i will end up carrying with me as i struggle to breathe.  and i struggle to breathe now.  so when i can’t breathe, it is an emergency. i can breathe. i just feel like i can’t.

two years ago i would have been ignored. two years ago, it would have been anxiety. it still is. but now my anxiety is serious. everything is serious. this is not mental health territory, it is the land of the quantifiable illness. it is where the scans contain answers, always.

my surgeon never asks about anything else, other than in passing. what are your liver enzymes doing. how is the bilirubin (the most important liver enzyme from what i can tell), how is your creatine, how is your urea? what is your blood count? what other enzymes are elevated? i know these things, i can rattle them off and tell you what normal is and normal isn’t, whatever the fuck normal is. i’m told that for me, my enzymes are normal enough. my blood count, perpetually anaemic, is ‘ok’.  but what he wants is those scans he pours over, pointing out tumours and indicating at me where the issues are, and what he needs done. he judges the health of my liver by the grey patches on a screen, and the mystery of it astounds me. how he makes sense out of this vague map is beyond me.

the angiogram i am lined up for is terrifying me.  it will illustrate if i can have sirtex spheres in my liver. if i can’t there is no hope of surgery. if i can’t… i dunno if i’ll live enough year. it’s unlikely. i need them, i need them desperately, and i am so afraid.  and there is again, no wait. they list a date and they will do it because my illness is CANCER, my prognosis is POOR, and it is both a desire to see me live, and the scientific curiosity to see how far this 31 year old body can be pushed to stave off death, and timing is vital.

and i can’t breathe, and it is the anxiety that makes me feel like i am dying. i manage it well. i am very, very good at managing anxiety. i can step myself off the attacks pretty easily, i have been trained in it, and one of my only life skills is managing my chronic, severe, crippling mental health issues well.  and i CANNOT FUCKING BREATHE and i am dying and don’t you understand how fucking hard it is to get the air in and that tumour is blocking it and my lungs are filled with fluid and i can’t breathe, i can’t breathe.  my diaphragm was cut open when i had surgery and it doesn’t work quite right. the wound aches across my stomach like someone is pulling all the strings tighter and tighter and tighter around my lungs and i can’t get the air in and i am dying, you don’t get it, i am DYING, and i am dying both here as i cannot breathe and i am dying because of the tumour wrapped around my left hepatic vein in sector 1 of my liver which is the branch between the left and right lobe, and it is dragging the air out of me and my back hurts so much and i am sure it is bone mets even though the scans are clear, and i can’t have another one yet.

those cream coloured domes of a CT or MRI machine, the colours of the scan room, the smells, they are familiar and they make me gag when i see them on tv.  i choke on the taste of the iodine, i shudder at yet another cannula of fluid that makes me feel like i am pissing myself, and my mouth and throat are hot, i cannot breathe, and i can taste metal. and the scans with the radiation. the machinery. the beeping of an IV drip when there’s an air bubble, or my port dislodges.  i am so done with this. i am so over this, and you don’t understand, i can’t breathe.

anxiety does feel like dying, people, and it feels even more like dying when you are dying.

there are degrees in the land of the chronically ill. there is a hierarchy of ‘seriousness’ not based on discomfort or pain or misery or disruption to life, but often on words.  i am disabled by my conditions; both the bipolar & the cancer. i’m writing about how they mix together, and hoping to find a hope for it in a journal. but my disability, despite being invisible, is taken so seriously at every step, with gasps of awe and looks of pity and fear.  i have CANCER. i have STAGE IV cancer. it is visible, it is real, it is clear, and my illness is not some thing that is sighed at, it is the thing of nightmares. it is the thing that gives the anxious – like me – nightmares – or did for years before i was diagnosed. i wouldn’t sleep some nights, chest tight, breathing fast, because i was so frightened of cancer. i did this while it wove through my organs and sunk into my blood flow. the fucking fear.  but i am different now. my scans are instant and serious.  i am, i suppose, at the top of the pyramid of ‘serious’. i get senior ER nurses thinking i am elderly and who double check, because they don’t look at my date of birth until they walk in. ‘wow. you are young!’ really man? i never noticed i was 31 with old person’s cancer. thanks. i’m glad med school has taught you this.  it’s uncharitable of me, and i appreciate those doctors and their shit hours and their compassion but sometimes i am just tired of it.

the scan form is clear. that form the doctor fills out started with ‘abdominal pain’, shifted to ‘spectacular lesions in liver’ to ‘metastatic rectal cancer.’ the way the scan people look at you shifts when the words are clear.  when you see metastatic.  it is neon and glowing and you are dying, and there is no escape from that.   urgency and care and compassion, not that fast tired pushing through of yet another stomach ache, or another headache.  and i hate that. i hate the patience and care with which i am handled while other people are pushed aside. it sickens me.  it is always serious and it all feels like dying.  anxiety feels as much like dying as the reality of ACTUALLY dying.

anyway. read Anna’s stuff. she’s great.

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