In Danger

by Josepha Dietrich

  The drive between Brisbane and John Flynn was about an hour and a half one way. Mum was relaxed with the professional nurses and doctors in a way she couldn’t be with me as her carer. The meals, though not brilliant, were delivered routinely. At the end institutionalisation wasn’t such a negative for a woman who had more important things to worry about, like living within a dying body without being in extremis. My mother could ‘relax’ knowing she was medically contained. When I was caring for her full time, she’d have to remind me if I’d missed one of her pain medications through exhaustion, as there was no one else overseeing the schedule.

  My own treatment was also made easier by the help I received from others. My fourth chemo session went smoothly and I handled the post-chemo body meltdown well. I wished that this would be the case for my remaining chemo regimen, but it wasn’t.

  My fifth chemo session was hell. Everything seemed to go awry. Good friends, Sara and Ian, from over the border in Mullumbimby, were with us to care for Celso, so B could care for me. They were classical musicians, book and language lovers with a compassion for others not found in many people. They had formed friendships with Iranian and Afghan refugees, and they’d visited their friends’ families in Iran and provided financial assistance to mothers left behind in Afghanistan.

  They were with us for the four days. They did the night shift with Celso so B and I could rest. But come Sunday, things weren’t looking so good for Celso. He was red-faced with a fever, he had diarrhoea and did a lot of vomiting, and he was floppy. The locum was concerned about swine flu (again), which was still running its course through Queensland, alongside another animal virus, the deadly Hendra virus.

  Both my son and I were put on Tamiflu antibiotics, which were nasty for the stomach, until we could get checked by our GP. B didn’t get the Tamiflu, though he was quickly sick too. By the time the virus really kicked in we were up like ghouls bumping around the house throughout the entire night. B was in the toilet with the flu or whatever it was, bent over. I tried to help him by getting some water, so I tiptoed into the kitchen to get a glass, past Sara asleep on her made-up bed on the dining room floor. I fumbled around in the cupboard and smashed a champagne glass.

  Sara was up.

  Then Ian was up, changing my son’s diarrhoea nappies. Celso was up too. He had a fever, was projectile vomiting like his father – and crotchety. When Celso got tired or wasn’t happy he rubbed at his eyes and at the tape on his face, which held his tube in. His scratching led to him pulling part of his tube out. After this occurred, all adults were up trying to settle Celso, putting his tube back down, and fixing his tape to his skin. Ian and Sara had to supervise both my partner’s and son’s health and check they weren’t getting worse. Later on when our friends returned home they too got a dose of the norovirus.

  Come the following Tuesday our son was hospitalised for two days at the Royal Children’s Hospital. I couldn’t go near him because of my low immunity, though I had the G-CSF injections on board forcing my bones to generate more white blood cells. B was exhausted and close to collapse. We had nannies, paid for by the Mater’s Chicks in Pink, stay overnight with him at the hospital so B could get some sleep. Our son was put on electrolytes and made a quick recovery.

  But even those dark days passed. One morning the week after, I heard B call to me from the dining room. Can you get a bib? I’m trying to tempt Celso with some yoghurt.

  I was bent over putting on pyjama bottoms in our bedroom. I grabbed a pin-bib and hobbled out. Leant over B and tried to fit it around his neck. B gave me an Is this a joke? look.

  The bib reached his ears. Oops, you’re not Celso. I turned around and fitted Celso with it instead. He beamed up at me and gurgled. Even through his physical difficulties Celso was such a sweet little boy.

  He didn’t appear to notice his mother no longer had hair or wore blue cotton beanies. He’d walk over to yellow ducks I’d lined up on the coffee table and swat them off – laughing open-mouthed with delight. He knew how to do joy: staring out at the world around him with fingers outstretched to touch something new – sucking into his world the day’s rays and all its looming oddities.

  Various doctors from psychiatrists to oncologists have talked about how cancer patients find the end of chemotherapy treatment the hardest part of it. When the cancer-kicking drugs are over, you are faced with life post-treatment and a new horizon with questions: Will my cancer return? Am I cured? Am I safe?

  No one can answer these. The only comfort of chemotherapy is that you’re protected from carcinoma attacking your body, with a Molotov cocktail of drugs ready to smite any raised malignant head. There is security in chemotherapy.

  The day after I finished my treatment I lay on my bed at home and took in the room’s dimensions: three metres by four. The blind’s wooden slats were closed. The curtain was drawn to keep out the vibrant spring sun, and the small sleep-out attached to the room let in a diffuse light. The high ceiling moulds were ornate and the light hung down loosely with a long-lasting fluorescent bulb protruding from a conical glass lampshade. The shadows drew my slow attention. Underneath the room’s original floorboards, a breezeway kept the house cool. It was the middle of the day and I was unable to move or drink: just inert with my head absorbed by the pillow, and the duvet covering my legs. My son babbled bubba speak somewhere in the house to our German-banker nanny, whose husband was an engineer working a diamond-encrusted underground boring machine to make way for a freeway tunnel. My weight was dropping rapidly. For four days after the final chemo session I ate nothing apart from dry Jatz crackers.

  I spent a week in bed staring at my hips protruding from my 51-kilogram frame. My gut didn’t work brilliantly, so there was internal pain. I was constipated on some days and greeted with diarrhoea on others. The skin around my fingernails was split like a dry creek bed and my haemoglobin levels needed to be higher so that I wasn’t at risk of constant anaemia. When it became too much I watched episodes of The West Wing’s season one lying side-on in my bed. I finished the entire season.

  I remained in an ill-chemical haze for one week. I didn’t think I could keep going, being that unwell. I wanted to re-read The Cure for Death by Lightning about a Coyote spirit that tries to marry a local farm girl, 15-year-old Beth. Beth overcomes self-harming to turn the hunter into the hunted and the bad spirit flees. Gail Anderson-Dargatz’s mythological quest set in Canada was just what I needed – its tale of warding off evil fitted my daily conversation with cancer, my evil Coyote – but I had no energy to engage with it.

  My son’s godmother, Ngaire, returned to spend a week with us for my last chemo session. Ngaire was a retired Canberran college teacher of sociology and psychology. She did night shifts caring for our son, cooked lovely meals and was in all manners a gorgeous presence.

  On her last night with us she shouted us takeaway fish and chips. The fish was grilled, and the chips were not that many. However, a funny thing happened on their way down my digestive tract. Within half an hour of eating, my stomach rose and rose until it formed the shape of a semi-deflated football. I was alarmed, but also felt like vomiting and was in a bit of discomfort. It expelled itself in the bathroom – several times. Rise – expel – rise again. My entire meal went down the Brisbane underground sewage system.

  I put this down to the fact that chemo’s effects were cumulative and the fast-growing cells in my stomach and other places didn’t like fat getting in the way, or quite simply couldn’t digest fat any longer. As I lay down on the bed after my toilet visit I remembered a cancer pamphlet in the preparation room I walked around in before my first chemotherapy session, advising patients to avoid fried foods because they were too harsh for a chemo patient’s stomach, as well as not being so healthy. I decided on the spot that I was like a dog, but instead of not being able to digest chocolate I couldn’t digest chips. I swore I’d never eat chips again, and haven’t.

  People often ask
ed me what the chemicals did to my sense of taste. It’s a little like brushing your teeth with double-strength mint toothpaste, then grabbing cold strawberries fresh out of the fridge and popping them in your mouth; you’re hopeful of something tasting sweet but it doesn’t. More like aluminium foil on teeth fillings.

  Three weeks after chemotherapy my hair sprouted through my scalp. I no longer had a flushed face from the steroids. I remained whacked with tiredness but not so badly it rocked my world. I no longer experienced intense nausea or food aversion. The metallic twang faded from my mouth.

  The more extreme side effects from my chemo cocktail diminished fairly quickly. The residual effects of Taxotere were muscle fatigue and anaemia. From Carboplatin you can get peripheral neuropathy (numbness and tingling of the extremities), which can affect your ability to walk. This disappeared, but returned when I started cycling for more than an hour. I was so happy that the dreaded chemo times were over and the next phase was in full swing that I barely considered these side effects. With my chemical romance came some other, not-too-serious side effects. My chemo flatulence alone could have cleared the Opera House of its guests and possibly some of its tiles.

  I finished chemotherapy in October and once the anxiety and depression lifted I looked forward to the victory lap we’d planned around the South Island of New Zealand the following month.

  I had a new oncologist as the first one was on maternity leave, having had a baby boy. My new oncologist spoke quickly and could go off on quick tangents of thought. It was like her rapid-firing brain had so much processing going on that sometimes thoughts fell out of her mouth into conversation. She’d come to Brisbane from Sydney and was searching for a Queenslander to make her stay more permanent. I clicked easily with her. I wasn’t good enough on the piano, she said during an oncology visit. She’d once attended the conservatory of music, but after giving up classical piano she went into medicine.

  Patients generally expect chemotherapy will make them infertile – it often does. Three weeks after I finished, though, a period arrived. I told my new oncologist.

  I didn’t think we’d need to start Zoladex so quickly, but we do, she said. Your oestrogen levels have risen enough to cause menstruation, so we’ll need to send you into menopause to reduce your risk of breast cancer returning.

  Zoladex is a monthly injection that sends you into a chemical menopause (it’s also used to chemically castrate men). It basically visits your ovaries and says, Hiya, girls, sorry about this but there’ll be no more eggs from you, and switches them off like a handy plumber. I had just experienced my last period, ever.

  The following week I sat again in a puffy blue remote-controllable chair in the day oncology unit. This time instead of exposing my portacath to a chemo needle I exposed my belly to a needle the size of a pen. The nurse did something clever when she administered my first Zoladex injection. First, she injected a local anaesthetic just under my skin to form a small bump, which stung a bit. Then she got the Zoladex needle – Don’t look, she said, but I did – and she injected a pellet-sized deposit of chemical into the bump so it wouldn’t hurt. Which it didn’t. The pellet’s contents dispersed over four weeks, and then I’d get another hit. The plan was to do this every month until I was near the normal age to be post-menopausal – 15 years away.

  Other women warned me that when you’re sent into a sudden menopause, bad moods can come on. No. Anger came on. I returned from shopping for dinner one afternoon – a healthy meal of salmon fillet, steamed vegetables and rice – with my temper boiling.

  I got out the steamer and cleared away breakfast plates and crumbs off the bench top. I wrung out the damp cloth and placed it on a hook to dry. The groceries were poking through the clear plastic bag, as I’d forgotten my green bags. This was my ‘office’, in which I cleaned, cooked, and organised every day. I gripped the sink with both hands. My life was going to pot: I was living the life of the meek; I couldn’t stand being a house queen anymore; and I wanted someone else to look after my son while I returned to meaningful work. Full stop. But wait! I didn’t have work to return to; I was a 35-year-old loser. And on it went. My body was ramrod stiff but my eyes darted around, searching for an answer in my bag, out of the radio, out the window. Depression was again kicking my front teeth in.

  Memory: will my relationship cope?

  My dreams are going through their death flurries … I thought they were all safely buried, but sometimes they stir in their grave, making my heartstrings twinge. I mean no particular dream, you understand, but the whole radiant flock of them together – with their rainbow wings, iridescent, bright, soaring, glorious, sublime. They are dying before the steel javelins and arrows of a world of Time and Money.

  Barbara Follett, Barbara

  I had no energy. It was draining down the plughole, the bath water chasing it down. The noise of it outdid Celso’s vocal protests. At this point his large, washable change table stood in the nook just outside our bathroom. The nook had four doors off it, leading to our bedroom, the bathroom, Celso’s room and the lounge room. A phone line ran up the side of the wall beside four semi-circular wooden shelves. We used these shelves for baby stuff: wipes and nappy rash creams. To get Celso from the bath to the change table took two steps.

  On the table, he kicked his legs into my stomach. His pudgy, working feet occasionally kicked my caesarean scar, which made me wince and draw my hips away. From the change table to his room took four steps.

  Everyone was telling me that a regular sleeping pattern was ‘best for baby, best for parent’. I had commenced putting my son down two hours before. He was still crying. Inconsolable. We both were. My son writhed in my arms. His eyes were watering. He needed to sleep. I did too; I was sinking. The older he got the more likely it appeared that he had a developmental delay and God knew what else. This was before any diagnoses, before I found life-altering programs and the right physical therapy. He wouldn’t eat food. I had to get nutrients into him with a special formula made by a Dutch pharmaceutical company and shipped up from Sydney. He was still nasogastrically fed; a tube went up his nose, down his oesophagus and into his stomach. I needed to sleep. He needed to sleep. I wanted out of cancer. I wanted out of mothering. I wished my son wasn’t this child. I wanted him without special needs. If only we’d conceived another night. A different egg and sperm would’ve mixed another baby – a normal, healthy baby. But I still wanted that baby as this baby. Just a normal version.

  A Texan yogi in Eat, Pray, Love gave Elizabeth Gilbert good advice when he said that if you couldn’t control your mind you were in trouble.

  I was in deep trouble.

  Depression had come home to roost, to ride my back. All the doubts rushed in. What was I doing trying to write a young adult novel as part of my master’s? This wouldn’t work. I wasn’t a writer. When I opened books and read the author’s bio it usually went:

  Mary Stage wrote The Luck of Beauty at 25. It was an instant bestseller. She was a journalist with The Times before she wrote said novel. Her second novel won the Orange Prize for Fiction. Her third book, a work of non-fiction, is ritually on the contemporary classics list in all good universities. She resides with her Italian husband, Pietro, a doctor for Médecins Sans Frontières and ex-model, in Milan with their fraternal twins Cute and Cuter. They divide their time between Western Europe, New York and Ireland.

  Due to Ms Stage’s success she now wrote full time. Her husband could support her anyway because he was a former highly paid clothes hanger and current well-paid doctor. Her breasts weren’t sagging (… or coming off) as she was a freak of nature but in a good way. Ms Stage didn’t need to wax her bikini line (hair just didn’t grow there, man), clean the bathroom, do the shopping, cook meals or spend all her creative energy on her children due to having a fairy doppelganger who spared her the trouble.

  I was not like this. Not one little bit.

  Brisbane summer was twirling her
full skirt and flashing everyone with her naked brilliance. Here, when you step outside the home, your pupils constrict so sharply that you walk around with tunnel vision for a minute.

  My hormones or lack of them made me grumpy under the oppressive warmth of Brisbane’s wet armpit hug. Or, as the literature for women taking Zoladex says, Mood changes are common.

  I was bathing Celso, leaning my arms on the porcelain edge of the bath, and ruminating. B was watching ABC iView in the other room. Yeah, just suck up that TV, arsehole, crisps in hand with nothing to do.

  I fumbled something and it dropped to the ground. For fuck’s sake! sprang out of my mouth.

  B rushed in. Are you all right?

  I get tired too, you know, I blared into his face.

  Okay. He was wounded.

  I smoothed down Celso’s hair and stood up. B took over washing him.

  I stormed into our room and crashed onto the four-poster bed, exhausted.

  After B put Celso to bed he walked into our room. I looked up at him.

  Sorry, I didn’t mean it, pea, I said, feeling like five kinds of poo.

  It’s okay. He shrugged, then made a face. I understand.

  I love B down to his mitochondria, but jab me with Zoladex and watch sparks fly. The heat from my menopausal hot flushes pressed tight upon my skin. I was claustrophobic, uncomfortable, red and sweating. I was murderous under The Menopause, and my burgeoning depression left no room for fun.

  Menopause dries you up. Oestrogen is a great lubricator of the vagina, joints, skin and brain. Part of going into menopause to protect myself from cancer was negotiating a body with plummeting oestrogen levels. To help the Zoladex keep my oestrogen level down I took a pill – Arimidex – alongside high doses of Vitamin D and calcium. This was all to help my body pretend it was in its 50s or 60s. Once I’d lost the puffiness of the steroids I’d taken during treatment, my forehead resembled a ploughed field.