There was an easy-going rapport between the head technician and her student. Photographs of their families were Blu-Tacked to the walls. Both were from Malaysia.
I was one of many patients they’d scanned that day for various reasons: cancer, osteoporosis, et cetera. As I lay dead still and listened to their conversation, I wasn’t Celso’s mother, I was just another female patient with breast cancer.
I was slim. The only body change I’d noticed before my breast cancer diagnosis was significant weight loss. I put it down to returning to my pre-baby body, but enough people had commented to make me aware I was skinnier than normal. My smaller frame on the tiny bed made me feel almost childlike.
I lay there and felt relieved I wasn’t being posted like a parcel, as my mother had been. Instead a large metal plate hovered within licking distance of my face to scan my skull and brain. It shifted further down, in shuddering jolts, to trace the contours of my body.
If I panicked I knew I could get out of the contraption by wiggling my arm out of one restraint and ripping the other off. I closed my eyes and tried to blank my mind.
What did it? I wondered. To get breast cancer ten years earlier than my mother. Maybe it was the oestrogen I’d taken to override my polycystic ovaries and their tendency to shut down the release of ripe eggs. Or could the hormones that flooded my blood during pregnancy have led to my cancer? Was it that pill that made my breasts lactate more? Would it have been less serious if I’d turned up to my regular breast check?
In the first seven weeks of Celso’s life I’d fed him either a full bottle of breast milk or a combination of my milk and formula. My supply dropped easily so I kept up my continuous expressing with a white pill that made my breasts produce milk.
I’d hired the handbag-sized breast pump direct from the hospital chemist after Celso was born. Attached to it I’d felt like a milking cow with two udder teats instead of four. Its yellow, electronic arm swished back and forth to measure out suction strength and timing. The first few times I was amazed at the rush of warm, opaque milk into the plastic funnel and how the spray hit the bottom of the bottles with a thud. I’d known when the splat sound disappeared that I had expressed more than ten millilitres and was on my way.
In the morning my breasts had been like fists that needed coaxing to relax and open up, letting their contents fall out. When the tension eased the relief was satisfying, but not pleasurable. My mother had once confessed to me that breastfeeding was sometimes better than sex. The letdown of milk releases a hormone also released by physical affection and orgasm. Self-enjoyment aside, I’d missed the nuts-and-bolts action of being a mother and of breastfeeding skin to skin – to provide the best nourishment – for Celso.
When I had stared down with pride at my pregnant belly I’d conjured snapshot moments of my future when He or She and I were cocooned together on a couch or at an outdoor café enjoying the simple life. I couldn’t wait to breastfeed, and show my baby off. When Celso refused my breasts immediately after birth and took the bottle, and even that reluctantly, a protective casing shucked off and I was raw and vulnerable.
I can’t feed my baby! I’d said to the hospital nurses, thinking I was a failed first-time mother. They assured me it would come. It never did.
At home after Celso’s birth we hired a clear crib on tall casters and wheeled him around the house so that we could see and hear him at all times. His floppy newborn neck allowed his head to drop to one side, where he’d commune with his reflection on the plastic walls. My Welsh uncle said that Celso looked like an angel. We were relieved it wasn’t Angelman’s, which the paediatrician flagged during my son’s first post-hospital visits as a possibility. A Dr Angelman had a syndrome named after himself: these severely disabled children loved water like toddlers do, but unlike most toddlers they would never develop normally.
After Celso’s birth, I almost didn’t make it to the cancer diagnosis.
You might lose your uterus. We won’t know until we open you up.
I was lying on a gurney with B behind me telling me he loved me and kissing my hair. I was in and out of consciousness, but when I was alert, I psyched myself up with I have a child now. We could adopt the next time. This played on repeat in my mind as I said to my stoic Irish obstetrician, That sounds a bit heavy.
Within five minutes I scrawled something like my name in red ink on the bottom of a medical ‘do anything to save my life’ consent form. Celso was in the neonatal intensive care unit, mainly because I was out of action and couldn’t feed him, and B was potentially about to become a single father and needed to make medical decisions on my behalf. Celso had been born with a stridor, a loud breathing sound signalling something was wrong with his larynx, but scored normally on his Apgar test: seven then eight.
It’s 2 a.m., why are all these people here? Exhaustion from a 25-hour labour, a caesarean and powerful painkillers had altered my state of mind. I sat on the operating table as a burly, pierced man clamped my head with two bear-like hands and my anaesthetist put in the second epidural. My body was gripped by the shakes. The obstetrician’s sense of humour had returned now that the transfused blood was working and surgery was imminent. You look like a truck’s hit you, she said.
It has, I replied, staring at the linoleum of the surgical theatre.
I woke up in the intensive care unit with an efficient nurse flapping around me. Mechanised tights, the medical version of leg warmers, pulsed up and down my calves to prevent deep vein thrombosis. The brown-eyed nurse picked up an intimate conversation with me as soon as she saw me stir, as if my waking had merely interrupted what we’d been saying, like we were two old friends. The possibility of dying in childbirth sends a shudder of horror through any woman, including nurses. I’d lost over four litres of blood from a massive post-partum haemorrhage. From kind strangers I had received 13 units of A+ blood. The relief of surviving the intensity of the situation, and of knowing my son was okay, relaxed me for the first time in a very long day.
The walk to the shower involved a rolling stand holding all my intravenous lines for medications, a nurse, and one of those frames the elderly use to walk to the shops. I was the medical version of an octopus.
An on-call obstetrician had saved my uterus. I remember seeing him slapping his own face to heighten his alertness – he’d arrived straight from his bed at home. When he walked up to my ICU bed I shook his hand. Thank you for saving my life, I said.
No worries, he replied. Next time, have a planned caesarean.
The irony was that if I’d lost my uterus after my son’s birth it would’ve been one less thing to contemplate removing a year on.
Until Celso’s surgery for a juvenile larynx at four months, his breathing was laboured and noisy. After surgery he couldn’t take bottled milk (he had still never managed to breastfeed) or keep any food down – at all. Little did I know at the time that watching Celso drinking from those initially heartbreaking bottles would be something I’d come to crave. Soon he would need a feeding tube. Life with my son was harried and the days were long, but they also passed as quickly as the crack of a whip. There was no time for anything else. Not even my regular breast checks.
Being a carer, where you’re forced to put another person’s life ahead of your own, fitted like an itchy, tight woollen jumper. I went to pull it over my head and it stuck across my shoulders. I couldn’t get it off, so I smoothed it back down over my chest. Celso played happily at my feet, but my head often lifted up to the horizon where I mentally planned my escape back into my brain. I thought this forward planning a sign that the mountainous road we’d been walking on as a family was levelling out.
Then the cancer diagnosis arrived.
After both the scans I stood on the street and simply breathed for a while. The entrance to the old veterans’ hospital was off a laneway; nearby a metal sword was thrust vertically into stone to mark the grave of the slain warrior, and
of Christ. In front of me a courier dropped off a document and jogged back to his car. The world continued to spin in its normal way, but my world had shrunk to two envelopes. My future was in my hands, but I was in no rush to see it. Standing there, I felt the temporary relief of not knowing. Unopened, the results were a choose-your-own-adventure novel: one way led to surviving, the other …
It was peak hour so I phoned B. I’ll catch a bus into the city then get home on the busway, I said.
On the way I went into Myer and bought myself a red handbag with zebra-print lining. Buying it cheered me up, but a buzzing in my stomach akin to nerves told me I had to get home to see Celso. The emotional cord that stretched between him and me pulled my attention back if I spent too long away, as it had when I cared for my mother.
On the bus I opened my scan results and read the doctor’s notes. There was, they said, no evidence of metastatic disease.
Portacath: could I think my way out of cancer?
Despite technological advances, the most useful tool available to a doctor remains their patient’s voice.
Gabriel Weston, Direct Red
Welcome! my interventional radiologist boomed into the waiting area. He stood looking down at me on the trolley. He was mid-40s, with well-combed short hair and a likeness to many men I’d danced with platonically in the 80s as an underage raver in Sydney. He was going to fit a portacath into my chest by inserting a ten-cent-sized pincushion under my skin above my left breast; sewn in place the portacath’s tail would thread up and over my left clavicle and into my jugular vein. Chemotherapy would deliver its chemical power straight into my heart.
I piped up at him, There’s a letter from the anaesthetist who did my lumpectomy about drugs to avoid. I get intensely nauseated.
I’ve read it. Don’t worry, because I’m sending you into a twilight zone. You’re not going under a GA. Most people don’t wake with nausea. You’re actually conscious and able to speak with me; you just won’t remember anything you’ve said.
But I want to know what I’ve said.
Yes, I’ve had some interesting conversations. He stared up into the room’s cornice with a faint smile on his face as if recalling some former patient’s obscenities.
What if I say odd and embarrassing things?
He shrugged and smiled. See you soon.
I returned to reading The Brain That Changes Itself on brain plasticity. It was the chapter on pain where Norman Doidge told the story of the neurologist Dr Ramachandran, a renaissance man who’d assisted an amputee patient, Philip Martinez, to successfully ‘amputate’ a phantom limb by fooling the patient’s brain to ‘see’ his amputated hand move using a mirror box. The intense pain of Philip’s frozen elbow disappeared after one month.
Medical memoirs and readable medical books interested me in general, but my growing fears about Celso’s development made me seek out stories of atypical learners, stories about people whose behaviour or brain functioning made them appear ‘retarded’, a ‘playful’ insult unfortunately still bandied around today. It pulls me up every time I hear it. I wanted the stories of those who, in adulthood, finally functioned well in communicating their intellect or thoughts with others. They could still be atypical, just independent. (My searching would eventually lead to a play-based therapy, the Son-Rise Program, that did indeed begin to ‘awaken’ my son.)
Five trolleys were lined up side by side with no screens. I was on the far right. Covered in white blankets, and looking down the row of men and women dressed in white theatre gowns, I glimpsed a shimmering aura of emotion, almost physical in its presence. A young man held his body stiffly. He grimaced when he moved and stared straight up into the ceiling. The woman next to me had a round face. She was wearing a loosely knitted beanie and peered about with curiosity, as if she was at a party and hadn’t been introduced to anyone yet. I avoided eye contact so I could read.
What are you here for? she said by way of introduction.
I’m getting a portacath put in, I said, and returned to my reading.
I came here to get mine out.
I put my book down. What did you have it for?
Breast cancer.
Who’s your oncologist?
She had the same one as me, and said that she thought the oncologist was lovely and always dressed well.
I agreed with her about the dressing-nice bit.
She told me about the alleged side effects of one of her chemotherapy drugs, Taxotere, but she’d experienced none of them apart from tiredness.
You’re lucky, I said. I hope I have the same run as you.
Yeah, she said. She was likely somebody’s grandmother; I could see her sharing a sponge cake with a child and pouring pretend tea into plastic cups for as long as the child wanted to play the game. This woman had travelled lightly through breast cancer treatments. I envied her.
My sprightly radiologist swung back into view. He and a surgical nurse wheeled me down a short corridor towards the operating theatre. I checked the doctor’s name on my identification wristband.
I pointed to my left wrist. There’s a different doctor’s name on my tag here.
Yes, Dr _____. He’s operating in the other theatre. There have been some changes to the roster of patients. You can have him if you like.
No, I like you. And I did. My interventional radiologist was kind.
Good, I like you too. His nurse wheeled me in. The atmosphere in the room was of professionals who had worked many graveyard shifts and had established a playful manner with one another. My name replaced the previous patient’s – another woman – on the computer display screen, which hovered above the table.
Someone’s been knitting in here, said a young nurse. He untangled a black, rubber slinky with a probe on the end that clipped onto a person’s toe or finger to measure the oxygen levels in their blood.
I was shaking. My nerves were swamped – again – like they’d been the day I had my CT scan.
The anaesthetist who sedated me for my lumpectomy wrote a letter suggesting TIV (total intravenous anaesthesia) to reduce post-operative nausea. For days after the lumpectomy I’d experienced waves of intense I’m going to vomit surges, that hospital’s green carpet rearing up at me again and again. Being on my back, about to be put under and operated on so soon after my lumpectomy, even for a minor operation, made me fearful. The shaking went all the way inside to my mind. If there were grab bars above my bed I would’ve clung to them, trying to centre myself, knuckles white. Give me some control.
Later on another anaesthetist, a female one, got the cocktail right and informed me that the days of nausea after my lumpectomy were likely due to a reaction to the anti-emetics, not the anaesthetics.
The portacath procedure was straightforward. I didn’t get sick this time, and once the drugs were out of my system I could leave. I phoned B to come and collect me from the front so he didn’t have to get Celso out of his baby seat.
After I healed I headed to the Royal Brisbane and Women’s Hospital (RBWH) to get an echocardiogram: an ultrasound scan of the heart. I was the youngest by 15 years or so in the waiting room – this had invariably been the case since my diagnosis.
The ‘echo’ checked my heart function and provided a base reading before chemotherapy’s rotgut commenced. My chemo regimen was TCH (Taxotere, Carboplatin, Herceptin). On Herceptin’s list of common side effects, first off the rank was moderate to severe heart failure. The uncommon side effects were acute respiratory distress syndrome (acute onset of severe shortness of breath) and pulmonary fibrosis (chronic lung damage).
My oncologist needed to know if there were changes to my heart after TCH started, so I would have an echo performed every ten weeks. They took about 15 minutes, but today’s took three-and-a-half hours; the sonographer had to rush to a patient who had arrived in accident and emergency. No worries, I said. I was inside a large, quiet room. Th
e lights were low and before she left the sonographer grabbed a blanket to throw over me; she bustled out of the room swinging her ample hips. I had the whole place to myself. No one could contact me. I went into a heavy sleep and woke later to my sonographer apologising for the delay. Then she squirted some warm gel onto my chest before wielding the ultrasound probe to see if this tin woman had a heart.
Chemotherapy: are genes us?
I felt my life with both my hands
To see if it was there –
I held my spirit to the Glass,
To prove it possibler –
I turned my Being round and round
And paused at every pound
To ask the Owner’s name –
For doubt, that I should know the Sound
Emily Dickinson
I was in the day oncology unit at the RBWH in Herston. It had taken some juggling for B to get some time off work, and for us to organise carers to travel from interstate to look after Celso. My mobile rang. Celso doesn’t need to be admitted, so we’re heading home now to put him to bed. Call me before you finish today, said B. Relief flooded through me, but the memory of Celso’s phlegmy chest sucking for air on our sofa at home and his sweaty face from a high temperature stayed in my mind. The danger to his small, lethargic body trumped everything on this day – my first chemotherapy day.
Our son’s godparents, partners Ngaire and Mieke, were in Brisbane to assist us as a family through that first chemotherapy session, and responsibility for the two patients was split between B and our friends. B with Ngaire had prepared for the possible admission of Celso and all that entailed: overnight bag, toys, medication, vomit rags, books, his favourite owl with a bell in its belly that jangled when he shook it. B then sat in the Royal Children’s Hospital accident and emergency department, ten minutes’ walk away from the oncology unit, with Celso and a GP note.
In Danger Page 3
