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.

IMG_2302

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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About elizabeth

various things.
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3 Responses to scanxiety: a response to Anna Spargo-Ryan’s ‘Head First’

  1. suracim says:

    I follow you and Anna on Twitter and just started reading both your excellent blogs. I used to blog on mental health issues, but it was a bit too close to home. 😌 All toes and fingers crossed for the year ahead for all of us.

  2. Julie says:

    BC and AD is pretty clever 😉
    I very much enjoy your writing. Thank you. (“Should I post this? Do I sound callous? AM I callous?” – these are the voices in my head. I feel like I should say more, but I don’t have the right words)…

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