Tag: books

The good, the bad and whatever else happens

Histrionics aside, my body is losing against this infection. I refuse to say ‘losing the fight’ because I have an uncomfortable relationship with the militarisation of illness and death. But no matter what I put into my body, ‘it is winning’,  as my doctor said this morning. He also wanted to re-admit me back into hospital, but I asked – begged – for two days grace. I now realise that was a mistake, so I’m returning as an inpatient tomorrow morning for whatever they can throw at me. More intravenous antibiotics and maybe steroids. Drugs that are going to make me even sicker. Drugs that will make my body hurt more than it already is.*

After coming home on Friday, I had what can only be described as a miserable weekend, and if I’m honest with myself, I’ve not improved a skerrick. If anything, I’m worse. Not having the energy to go for a walk, let alone drive, my Dad delivered some supplies to me yesterday and was worried about how I looked. I was very pale; a little grey. Across the weekend, there was nausea, shocking headaches, dirreahea (so hot, I know), rigours/fevers and I struggled to walk to the bathroom or eat. I finally ate on Sunday night. Carbed up. Lots of pasta. Late yesterday, I mustered the energy to watch Harry Potter and the Order of the Phoenix which I’ve had since I’ve been home, but I just haven’t had the mental capacity to concentrate. Last night I watched Dumbledore die in the Half-Blood Prince. Snape, you cunt. I was too tired to even be bereft about his demise.

So why did I ask for two days grace? It’s simple. I have an event I’m running on Saturday called ‘Dying to Know Day’ and I don’t want to let anyone down. DTKD is all about creating death literacy in the community and getting people ‘death aware’, thanks to an amazing initiative by The Groundswell Project. Just as I was getting ready to cancel the event, my great mate and colleague Bruce – who did a brilliant job as celebrant at my grandmothers funeral back in June – has oh, so kindly offered to step in, so not all is lost. I’ll be able to get to the event, but I just won’t be my usual hyperactive self. Because talking about death and helping make people feel empowered makes me feel alive. Oh, yes it does.

So amongst all this (what I perceive as) bad stuff, I’ve been blessed to be on Baxter bottles (say that five times fast), which saves me from having to scrub up, draw my antibiotics up three times a day and then push them in a collection of syringes, which takes about an hour for each dose. Instead, I hook these babies up to my CV line (the neck jewellery I’m desperately trying to not accessorise, because a quad lumen CV line is ENOUGH), and the balloons within slowly deflate over a twenty-four period. If I didn’t have the Baxter’s, I would have had to stay in hospital because my fatigue is so beyond what I thought it was going to be. So this is my daily set up. Breakfast. Grubs up …


A late dinner ….


The balloon in the bottles shrinks over twenty-fours so I get a constant supply of the antibiotic. So flippin’ clever …


My woollen backpack. Attached to me except when I’m sleeping. Which was a lot over the weekend …


After my appointment today, Mum took me to the book store where they had a copy of the Deathly Hallows waiting for me (thank you, universe). Then we had some lunch (thanks Stu at Avid for the pumpkin and ginger soup), and then to a couple of other places where I saw other various favourite people until I was ready to collapse. Then I came home and did LAUNDRY (it really is the small stuff).

And so, I have this message for the universe …


*I need a massage.

The week that was …

Last weekend saw me help shepherd my sister out of the shadows of a broken marriage and into freedom. Freedom from years and seasons of pain and sacrifice, and freedom born out of an indelible cost to her humanity and identity as a woman. A big group of people who love her ferried her out of her grief and into her new life on Saturday night where we celebrated into the night at a swanky bar in town. Having recognised the best thing about this ending is that there is now a new beginning that awaits her. That, and I have my sister back. Back to her maiden name and back to the person she was – not the broken, shackled woman she emerged as … there’s only so much I can share. We’re all little broken and our friends and families are the glue who build us back up to who we once were. That and love, of which she has in spades.


But just when you think you’re getting on top of one thing, the wind changes and bowls you over. I noticed that my right nostril was a little sore when we were out, but didn’t think much of it until the next morning when I woke up a little swollen across the bridge of my nose. I hazarded a guess and thought I might have cellulitis – an infection in the skin – so I called my transplant consultant and he said to pack a bag and come to clinic the next day. It was a swift response once they saw me. After blood tests, I ended up having the worlds fastest sinus CT scan and was diagnosed with having septic sinuses. So yeah, a touch of septicaemia due to a slightly diabolical sinus infection (thanks Cystic Fibrosis – you just give, give, give …) I was taken up to ICU for a central venous (CV) line to be inserted into my jugular so powerful intravenous antibiotics could be started as soon as possible so the infection wouldn’t spread to my places like my eyes or my brain. Here was my view for the afternoon. Whoever invented the heated blanket box needs a Nobel prize.


It was tough going. The doctor who performed the procedure was determined not to use a scalpel on my ‘soft and lovely’ skin, and because he had to push in 14cm of tubing through my skin and into my jugular vein, he pushed as though he was doing CPR on my collarbone. My chest was pushed into the bed so brutally and it really hurt me (there’s only so much local anaesthetic can do). While I was waiting for a bed on the ward, intravenous vancomycin and meropenem commenced. I’m also on oral ciprofloxacin because IV cipro totally incapacitates me and tears my gut to shreds.

I was in a lot of pain from my nose as well as having a tube shoved into my chest, so I was given some pain killers for the night. And it was one of those nights where I had a nurse who just should not have gone into nursing. On Tuesday, I woke up looking like I’d been in a cage fight and I now know what it feels like to have my nose broken. It’s really quite fucking excruciating and I have a newfound respect for boxers and other sportspeople who have their faces regularly rearranged. Here I am looking a little different to what I was on Saturday night …


So I need sinus surgery and I need it soon. The last time I had surgery,  my ENT specialist said that they were scraping the base of my skull and that removing the actual infection (the snot) was like pulling out chewing gum.

And so the week went on. Yesterday was my graduation from my pastoral care training, but I was too ill to go. My beautiful group kept me updated with photos and videos which made me feel like I was with them. I was so disappointed not being with them as we officially became hospital chaplains, but when your body shuts down you have to listen (even if it is telling you to forget about your antibiotics, get in a taxi and go to your graduation).

The universe works in remarkable ways. I’ve always found that with pain comes great beauty. Thousands of words of poetry have poured out of me and I’ve come up with a humdinger of an idea for a poem that involves water. Of course.

After coming home today, and then having to return to hospital twice, the levy finally broke. Today was tough and I’m simply worn down from pain and the onslaught of infection in my body. My white cell count is up and the gravity of the week had me drowning. I think a little piece of me broke. I can’t even do a solid shit (and won’t for at least another ten days), I got my period yesterday, the skin where my CV line is is red and angry and my belly is bruised from clexane injections to prevent blood clots, so … I took a deep breath, put Xerxes, HWV 40: IV. Largo (Ombra mai fù) on repeat, had a long, restorative shower and redressed my CV line. This is how it looks sans adhesive dressing. The four stitches are to keep the line anchored so it doesn’t tear out of my jugular. Tears are optional.


This week has left me feeling crestfallen. I got through the Harry Potter book where Dumbledore dies and the nurses looking after me thought I was howling in pain, but it was more existential – observational even. It’s odd because I’m so used to crying with joy – not immense sadness. Out of the mire of pain comes a stockpile of words – more than I even need, so after my blue moon ritual tonight I’ll hook myself up to my IV’s, put words down – both gently and ferociously – and feel safe in the knowledge that tomorrow is a new day.

Regime #4 gets a smashing review (as does my poem)

I am, at my very core, a poet. Along with memoir, it was the first form of writing I chanced upon as a child. I wrote my first memoir when I was six – cute and heart-heavingly sad. I still have it – or at least my Mum does. HB on foolscap. Illustrated.

But this post is about poetry – not just my poetry, but the work of the wave of new Australian poets sweeping through the poetry arcadia like Michele Seminara, Philip Ellis, Nathan Hondros, and Stuart Barnes – all genius poets and what’s more, my friends.

And so we were reviewed by highly respected Blue Pepper – a poetry blog I’ve long admired – http://www.bluepepper.blogspot.com.

My poem ‘Primitive’ received the following praise – And the sheer exhilaration of Carly-Jay Metcalfe’s “Primitive” was a true revelation. It is the exception that proves the rule regarding the longer poems, a cinematic rollercoaster ride of a poem that set this bruised old heart racing with lines such as “Eating from the hands of the land,/summer steals in”.

And this – it is the thrill of such chance discoveries that make publications such as Regime 4 so invaluable to the literary wealth of a burgeoning culture. Such serendipity has long been leached from the pages of more august publications in this country, where the same old names from the same old generation continue to pepper the indexes as though “Oz lit.” were in perpetual holding pattern. For such serendipity and courage, Bluepepper dips its hat to the editors of Perth’s Regime Books.

I am beyond thrilled – not just with the generous review of my work, but with the love the other poets in Regime #4 received. Thank you for reviewing us, Blue Pepper. I’d really like to extend my gratitude to Nathan Hondros for showing true courage in believing that the printed book STILL matters. For me, it will always matter. You can’t dog-ear or write in the margins of an e-reader or revisit the page over and over until it’s that little bit flimsier than the rest because you have loved it so. There is nothing like holding the spine of a book in your hands as it hovers above you in bed; that heady smell of print so close to your face.

When I pick up a book, I smell it. Strange? Not as odd as you think. It’s a comforting scent for me, because between the covers of a book, there is someone else’s story. I remember when books would arrive for me in hospital as a little girl; books I’d ordered from the book shop or books from the library. I wouldn’t and couldn’t wait to split their spines for the first time where there would be other worlds, characters that stayed with me for the rest of my life, and stories that grabbed me by the throat and refused to let go.

I have some ridiculously exciting poetry news to share soon, so stay tuned.


I have always been captivated by books and reading. It would tug on me – an exquisite pull moving me away from wherever I was, which was for the most part, a place where I did not want to be.

Two books that have lingered are ones that Ineka recommended to me – Colin Theile’s ‘The Undercover Secret’ and Louise Fitzhugh’s classic ‘Harriet the Spy’. Reading was better than prescription medicine; better than physio, anti-biotics, being tipped on a bed until you were all but hanging like a bat with your feet hooked under the mattress so as not to smash your skull on the headboard.

I became Harriet.

So much so, I created my own spy route. I found myself a reporter style notebook and a magnifying glass, wore a long olive green vinyl coat and a Fedora tipped on its side. With my long coat, my awkwardly tipped hat and my notebook, I’d loiter around the neighbourhood, my feet idling above the asphalt, writing down everything I saw.

And yes, everything was suspicious.

Reviving thoughts of Ineka is something I do well because we spent so much time in hospital together. After the lights had been switched off, almost savagely and not leaving any of us with a chance to settle after what could have been a traumatic day or night of missed cannulations, being held down on that plank of a table in the treatment room or a run in with the matron. Or if a friend had died behind closed curtains while relatives were ushered in and out in their disoriented grief. A grief they had nowhere to place.

Long after we had been told to scramble into our beds, Ineka would bide her time until all the beds in E cube were silent. Then she would wait to hear the gaggle of nurses up the other end of Turner Ward, gossiping and writing in charts at the front desk.

You wouldn’t hear Ine rise from her bed because there was nothing of her. But you could always hear the breath rattling in her chest – her signature sound. Sleep has never come to me easily and so I would see Ine. She would read by the window, her only light being thrown down by the moon and the lights from the park that always seemed within reach. Everyone would be asleep and I would watch Ine read.

I wouldn’t have been older than seven or eight, yet I still hold her silhouette in my mind – a little girl with a curved back, cradling the spine of a book in her hands, her massively clubbed fingers like matchsticks shaking from Ventolin, trying to stifle her coughing so she could just keep reading. Ineka’s coughing fits were more akin to marathons and were never easy to listen to or watch, except that you would because you knew that her suffering was so immense, you felt compelled to listen. She would turn equal shades of red and blue and there were times we thought she was going to breathe her last crackling breath. Many times I watched as she bled from her lungs and out of her sweet mouth.

But in that muted light, the shape of her face, that curve in her back bones, her thick dark blonde bob, her purpose was authentic. Ineka knew she didn’t have long on this earth. As did we all – patients, nurses, doctors. I like to believe that Ineka sees me write, and that she would read my work if she were still of this earth, or simply that she does read my work. Even as a little girl, I remember saying that it was like she was dying all her life. And it’s here where it hurts to be alive.

So why couldn’t they just let her read?


Books on my bedside table …

What I’m reading (and re-reading) this month:


Sufficient Grace by Amy Espeseth

Beneath a Darkening Sky by Majok Tulba



Collins Italian Dictionary

The Tree in Changing Light by Roger McDonald (re-read)

Last American Man by Elizabeth Gilbert

The Bhagavad Gita

Writing the Memoir by Judith Barrington

A Room of One’s Own by Virginia Woolf (re-read), because a woman must have money and a room of her own if she is to write fiction. Thank you, Ms. Woolf.



The Coral Sea by Patti Smith

Last month I didn’t read much at all:


The Outlaw Album by Daniel Woodrell


Mortality by Christopher Hitchens

Until Further Notice, I am Alive by Tom Lubbock



A Coney Island of the Mind by Lawrence Ferlinghetti

The First 30 and other poems by Graham Nunn

Home {sic} by Julie Beveridge


I’ve now had my television turned off at the power point for three weeks. Instead of watching the nightly news bulletin which is anything but good for me, I’ve been able to double my reading load. Something positive I can take with me into the new year. Who needs t.v when you have books and music and beautiful conversations*?


* until Offspring is back on next year. Cannot. Live. Without. It. Oh, and Puberty Blues. And Dexter and Breaking Bad on demand.