ABC of October – Anniversary, Breast Cancer, Check-Up

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I can’t believe another year is nearly over, but my annual mammogram reminds me, as does the city drowning in pink. To have a mastectomy in October, Breast Cancer Awareness Month can put you off pink for life!

However, I am extremely grateful to be alive and to celebrate five years survival – hooray!

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A big thank you to my two daughters for their unswerving, unconditional support and the beautiful flowers they bought me to add to their message of love and gratitude for yet another year.

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The memory of being picked up from Cabrini etched like a tattoo. The foyer of the hospital, fences of the local sports ground and numerous businesses festooned in pink,  courtesy of the McGrath Foundation or the plethora of organisations belonging to an extensive breast cancer network. So many women and men working hard and doing an excellent job keeping the disease in the public eye.

Pink balloons, ribbons, posters abounded – even pink buns from the bakery –  as I left the hospital with a drainage tube and plastic bottle where my left boob used to be.

I suppose psychologists will have a name for my word/image association and all the emotions triggered, but I’ll stick to a good old Scots word – scunnered. And I try and avoid all the hype and pinkness I can.

And so, yesterday, like other years, I went for my mammogram and ultrasound at the local radiology centre, which, as usual was decorated like a pink Christmas. However, no joy or excited anticipation for me – the only present I wanted was to hear ‘all clear for another year.’ Thank you, God, I whispered you’re a longer-lasting, caring entity than Father Christmas!

All the happy smiling faces and bunting in the world couldn’t suppress the fear lurching from my stomach and squeezing my heart and throat while I waited for the test results to determine whether the cancer is active.

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I’m aware I’m in the lucky 90% who survive five years, but the constant reminder that in Australia,  seven women a day die of breast cancer always dulls the joy. This year I lost my dear friend Margaret and another friend, Jillian had the shock of her cancer returning after 13 years. Vigilance and that little gnawing fear ever-present along with the mantras – count your blessings and one day at a time!

I often feel uncomfortable with the pinkness of breast cancer advertising and the endless walks, runs and other events seeking donations. When I saw the film Pink Ribbons Inc in 2013, I knew I wasn’t alone feeling disquiet about the corporatization of breast cancer.

I regularly donate for breast cancer research because I’m truly grateful for the excellent treatment I received, but target my donations. I want to help but shy away from the morning teas, lunches, dinners and the seemingly endless pink products.

As a writer, I can donate my skills. I was thrilled to have part of my story published along with others in a book to raise funds for research and practical assistance to those diagnosed with breast cancer. The book can be purchased from Busybird Publishing and is usually for sale at conferences or events organised by the Breast Cancer Network Australia.

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There are so many physical and mental ailments that people struggle with daily.  My wish is for people to give generously to whatever cause and not expect kudos or a toy/ribbon/trophy in return – and that big pool of medical research will keep expanding and being successful where and when it can! People live with a disability, illness and pain from birth – what courage that must take and many don’t have the collective power of a group!

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My diagnosis was in August 2010 – my birthday mammogram – and although there have been discussions about the benefits of regular testing I can only speak about my journey. I’m blessed to live in a country with access to affordable medical expertise and choice of treatment.

Long live Medicare, bulk billing, public hospitals and government funded research – and access to information so I can think for myself.

Yesterday, one of the women employed at the radiology centre greeted me like an old friend. She has given me mammograms and ultrasounds over the years and even attended a series of writing workshops I did to write up stories of her childhood in Ireland. Her welcoming smile always appreciated, and it beamed even brighter yesterday, ‘It’s been five years? No! How wonderful!!’

When I read some of my journaling from the early days of diagnosis it is indeed a wonder:

September 7th. 2010
I am feeling very poorly– ‘1’ in the rating toolbar of the journal gifted by the Breast Cancer Network Association should have a few minuses. Following diagnosis by BreastScreen, the book arrived by Express Post, accompanied by four other tomes. I only registered online that day!  Efficiency plus but 4 volumes of information: too much, too soon, and too confronting! Talk about information overload…

However, the journal is fabulous with sections for appointments, keeping track of expenses, contacts and personal observation. A practical companion for consultations, hospital visits, and to use as a bedside confidante.

It is the morning after the night before – the drama of my second operation yesterday looms large. Icepacks renewed all day on what remains of my left breast. More breast than I thought I’d have – hooray! I am obsessed with checking my wounds and fear another haematoma but Surgeon Peter assured me, ‘Mairi, I have a patient develop a haematoma once in ten years. You’re the second in as many weeks – the quota is complete until I retire!’

Vigilant and with extra diligence, the nurses check my breast and vital signs. I try to relax, repeating the mantra, ‘I’m in the best place. I’ll be okay.’

The girls’ visit full of last night’s emergency. They both look so young and vulnerable. I hate putting them through this. They explain how my breast and neck merged to burst from my pyjamas; a bright blue balloon because of the dye from the sentinel node biopsy.

‘You were turning into a female version of the Incredible Hulk, Mum,’ said Mary Jane.

‘Except you were blue not green,’ interrupted Anne, ‘and your face was whiter than that cover.’ She pats the cotton bedspread.

‘Actually,’ said Mary Jane, ‘your face was a horrible ashen. I never want to see you look that way again – especially the look in your eyes.’ She shudders, her hazel eyes glisten tears. An anxious flutter of fear ripples across my chest.

‘I knew something was wrong,’ I say quickly, ‘but didn’t know what. I’m glad you ran for a nurse. I don’t think I pressed the buzzer.’

‘You did Mum because I bumped into Hue coming in to ask what was wrong.’

‘My goodness, didn’t he get in a flap? Literally!’

We giggle at the memory. Nurse Hue is male but when he came through the doorway and took one look at me, he threw his hands in the air, flapped and squawked like a frightened bird and ran out of the room, his Vietnamese voice pitched higher than normal  yelling for assistance. Images of the distressed maiden in Victorian novels having ‘a fit of the vapours’ spring to mind and I smile at the memory despite discomfort…

A gaggle of nurses crowd my bedside, checking the swelling, hard and the size of a football. The last nurse to take my blood pressure and temperature assures the Sister-in-Charge everything was fine when she examined me. ‘That’s right, ‘I agree sensing reprimands and guilt trips, ‘I only started to feel unwell after dinner.’

Surgeon Peter materialises by the bed, the nurses part like The Red Sea. Thank goodness he was still doing the rounds of his patients. He holds my hand, his soft voice comforting. ‘You have a haematoma and the operating room is being prepared. Staff cleaning up after the last operation of the day have offered to stay on.’

I murmur appreciation, apologise for the fuss.

Barely nine hours since the last general anaesthetic, my full stomach and collapsed veins a concern. Peter assures an excellent anaesthetist has had his dinner interrupted and is on his way. The subliminal message, ‘you are in good hands,’ designed to allay fears.

I smile thanks, wrack my brains for knowledge about haematomas. Judging by the reaction of the nurses, Peter’s sombre demeanour, and the horror in the girls’ eyes, it’s serious. The phrase ‘deep shit’ springs to mind. I see the popular poster of a cat clinging to a tree branch by one paw my sister has in her toilet. I want to be a cat and have nine lives!  I recall the various crises my brother George survived as he battled leukaemia and relaxed into the pillow. What will be will be…

I watch Peter’s face as he explains the emergency to the girls. Anne pales, tears bubble in ice blue eyes, she looks about to faint. Peter directs his calm voice at Mary Jane realising that although the youngest she is handling the situation better. He leaves to prepare himself for theatre just as a nurse manoeuvres my bed towards the door, requesting help from the girls to push it to the lifts.

We gather speed; I sense the pushers are trotting, hear heavy footsteps along with squeaky wheels. The faces of the nurses and patients we pass beam uncertainty… pity from the tea lady as she squeezes her trolley out of the way.  Hue’s whispered, ‘good luck’ sounds more like ‘good bye’. Am I going to die?

Fear claws at my throat, I grip the mattress until fingers ache, I want to see my daughters’ faces but have lost my voice. The lift doors slide open, the bed bumps over a metal strip. Inside the claustrophobic space, I meet John.  His wraith-like presence is beside me, bending over, reaching arms out to gather me up. Without moving my lips I plead, ’Please darling, I can’t come yet, the girls need me.’ He smiles, understands, dissolves…

The harsh lights of the operating theatre startle me and the near empty space echoes with voices, footsteps, indeterminate noises. Everyone has gone home except for the cluster of nurses waiting to begin preparations: my vital signs monitored, inflatable white leggings attached to protect me from blood clots. Michelin Man again. Protective hat and socks fitted.

Nurse Pam introduces herself and mumbles about my full stomach, shakes her head. A portent of death.

The young anaesthetist struggles to find a vein with his portable ultrasound machine. Three attempts leave me bleeding and wincing before success and a stent inserted.

Mary Jane squeezes my hand, smiles assurance; Anne strokes my face, forgetting to wipe the tears dribbling down her pale cheeks. She bravely remains close despite her paranoia of needles. In a silent pact the girls and I ignore Nurse Pam’s voice of doom, keep fear under control, the  girls joke that the leggings make me even more like the Incredible Hulk.  I close my eyes and smile Michelin Man from an era before their time… so many memories

‘I drained a litre and a half of blood from that breast,’ Peter’s incredulous voice a wonderful sound.

I am back in the ward; the girls sit grinning at the end of the bed. The clock whirs, the small hand clicks as it leaves midnight and a ‘breast cancer complication’ behind.

September 6th disappears into the stuff of legend. The first day of the rest of my life begins…

I love this text my daughter sent me yesterday:

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With support and attitude like that how can I not feel positive!

Happy writing indeed!

Samoa – Paradise Found

We are all travellers in the wilderness of this world, and the best we can find in our travels is an honest friend.

Robert Louis Stevenson (13/11/1850- 3/12/1894)

I love this quote by Scottish author, Robert Louis Stevenson whose life and writings have inspired me since childhood. In fact, I became so fascinated that I determined to visit Samoa where he spent the last four years of his short life and pay my respects at his graveside.

The trip moved to the top of my ‘bucket list’ after being diagnosed with breast cancer in October 2010. Last week during the September holidays, I gifted myself a trip to Samoa to celebrate what I hope will be my fifth anniversary cancer free.

I’m a traveller, not a tourist. I enjoy learning about different cultures and places,  making an effort to befriend locals who reveal insights and knowledge about their homeland. A love of travel one of the many things husband John and I shared.

However, my obsession with Samoa goes back to a younger self, leafing through the ten volumes of Arthur Mees Children’s Encyclopaedia Dad purchased for the family.

In 1961, I dreamt of being like RLS:

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I travel not to go anywhere, but to go. I travel for travel’s sake. The great affair is to move.

The stories of  Stevenson’s final years in Samoa enthralling because he arrived at a significant period in the country’s history ( in the midst of a civil war) and yet established good relationships with the people. He was called Tusitala, the Teller of Tales. So revered by the Samoans that when he died, they carried him to his chosen resting place, to the top of 472m Mt Vaea. They created a trail significantly named “The Road of the Loving Heart”! 

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the tomb of RLS

After arriving at Apia’s Faleolo Airport at 4.20am and having to adjust to the well-known, constant heat and humidity, I chose to visit  RLS’ tomb on day two of my holiday.

I ordered a taxi for the 3km trip up to the Vailima National Reserve, and Tai arrived at 8.30am so I could climb before the heat of midday. At $10 tala, taxis are a cheap, reliable alternative to the often crowded local buses costing  $2.00 tala.

Mt Vaea is a volcano from Samoa’s origin 2 million years ago, but the crater rim has almost eroded away. The original lava rock is now rocky soil although many large rocks remain, especially near the summit. There are warnings of landslides after heavy rain. A slippery trail is not the only hazard: – jutting tree roots, steps made for giants and steep gradients are a few more! This trek is not for the faint-hearted or unfit.

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There is a choice of trails – I chose the short, steep trail on the way up and the longer ‘more gentle grade’ (debatable) on the way down. The vertical climb to the beginning of both trails is 200m from the car park.

My daughters had bought me a ‘selfie stick’ so that I could take photographs as proof of reaching the tomb and for other outings in Samoa. Unfortunately, my mobile is too old and incompatible with the thoughtful present.

“You see Mum, I told you to upgrade your phone!” Anne and Mary Jane admonished me in unison.

My response, “Well, since your Dad died I’ve travelled a lot on my own and always found someone who’d take a photo of me!”

On top of Mt Vaea, I found half a rugby team – what I thought was a rugby team! The nine young men and one woman were police officers who had come off night duty and were doing a weekly exercise to stay fit. They puffed and panted past me, some struggling more than others, but I wasn’t that far behind, and they cheered when I arrived at the top – red-faced and gasping – but in one piece. They insisted on photos with me, totally amazed I was 62 and celebrating surviving BC.

The view was as magnificent as brochures promised and as described in The Life Of
Mrs. Robert Louis Stevenson:

“Nothing more picturesque can be imagined than the narrow plateau that forms the summit of Mount Vaea, a place no wider than a room and as flat as a table. On either side the land descends precipitately; in front lie the vast ocean and the surf-swept reefs; in the distance to the right and left green mountains rise, densely covered with the primeval forest.”

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“Stevenson’s tomb, with the tablet and lettering, was designed by Gelett Burgess, and was built by native workmen under the direction of a half-caste named George Stowers. The material was cement, run into boxes and formed into large blocks, which were then carried to the summit on the strong shoulders of Samoans, though each block was so heavy that two white men could scarcely lift it from the ground. Arrived at the summit the blocks were then welded into a plain and dignified design, with two large bronze tablets let in on either side. One bears the inscription in Samoan, “The resting-place of Tusitala,” followed by the quotation in the same language of “Thy country shall be my country and thy God my God.” The other side bears the name and dates and the requiem:

Under the wide and starry sky,
Dig the grave and let me lie.
Glad did I live and gladly die,
And I laid me down with a will.

This be the verse you grave for me:
Here he lies where he longed to be;
Home is the sailor, home from the sea,
And the hunter home from the hill.

The requiem

Fanny died in America, but her daughter returned her ashes to Samoa:

“When Fanny’s daughter and husband, Mr. and Mrs. Field arrived in Samoa they brought with them a tablet which they carried to the summit of Mount Vaea and had cemented in one end of the base of the tomb. It is of heavy bronze, and bears the name Aolele (Samoan for Fanny), together with these lines:

Teacher, tender comrade, wife,
A fellow-farer true through life,
Heart whole and soul free,
The August Father gave to me.”

“On the tablet for Mr. Stevenson the thistle for Scotland had been carved at one corner and the hibiscus for Samoa at the other. On his wife’s the hibiscus was placed at one corner, and after long hesitation about the other, a sudden inspiration suggested to Mrs. Field the tiger-lily—bright flower whose name had been given to little Fanny Van de Grift by her mother in the old days in Indiana.”

Tiger-lily and Scottish Thistle nestled together under tropical skies enjoying starry nights as of old, far away from their birthplaces. There is  no waving yellow corn or purple heather clad moorlands, but people from all over the world pilgrimage to Samoa and climb Mt Vaea to pay their respects and tenderly pray or leave flowers on their tomb.

Samoan Journey
Haiku by Mairi Neil

A much loved writer
Robert Louis Stevenson
The teller of tales

Inspired childhood dream
To follow loving heart trail
No longer strangers

I traversed The Road of the Loving Heart breathing in the sweet scents of rainforest trees and flowers. I listened to delightful calls from various birds, especially the easily recognised tiny scarlet robin (tolau ula) and Samoan fantail (se’u). I thought of RLS and envied the writing inspiration he must have experienced in such a delightful environment. Imagination fired I realised; I could be the last person on earth – other walkers a rare sight. The serenity disturbed by black and green geckos (miniature dinosaurs!) darting around my feet, abandoning where they basked in sunlight atop rocks or protruding tree roots. Their frantic escape into dry leaf litter sounding more like a possum or fox and disconcerting as I concentrated on not losing my foothold.

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It is not so much for its beauty that the forest makes a claim upon men’s hearts, as for that subtle something, that quality of air that emanation from old trees, that so wonderfully changes and renews a weary spirit.

Robert Louis Stevenson

The climb certainly renewed my weary spirit and the sense of achievement satisfying. Despite the heat, sore muscles and sweat-soaked clothes I had a smile on my face as wide as the Mississippi!

I’ll share further adventures of my week in paradise in other posts and leave the last word to RLS:

Books are good enough in their own way, but they are a poor substitute for life.

Hair Today, Gone Tomorrow

Cancer is really hard to go through and it’s really hard to watch someone you love go through, and I know because I have been on both sides of the equation.

Cynthia Nixon

This year, as I tiptoe towards 5 years of being clear of breast cancer, the disease seems to haunt me. My dear friend Margaret lost her battle a few weeks ago, another friend is beginning the fight again after being 13 years clear, and I’ve reconnected with a past student because she wanted me to edit what she has written about her battle with depression after her diagnosis.

Sometimes it is hard to remain positive and I’m grateful I’ve been able to use my writing as therapy to work through a lot of negativity.

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When I was diagnosed with breast cancer in September 2010 after my 57th birthday mammogram I was stunned into silence – and for anyone who knows me that is a rare state! I’ve been described as chatty, sociable, loquacious and vocal as well as the negative connotations – talkative and verbose!

You can’t plan or know how you will react when you receive a cancer diagnosis. Sometimes silence is the best option until you work out how to knuckle down and get on with the treatment – one day at a time.

Through the several operations, chemo and other treatment my mantra became “This too shall pass.”  I had to survive. My girls had already lost their Dad, it was too soon and they were too young, to grieve over their Mum!

Fortunately, I had friends who had survived. They were only too happy to support me, share their journey, and show me there was a future.

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However, chemotherapy takes you to a place you never want to revisit, but you do get through it and recently I found this piece I wrote about my experience.

Hair Today, Gone Tomorrow

Mairi Neil

The rows of chairs along the walls face each other like a hairdressing parlour. They are reclining armchairs, not the swivel seats found in salons, but the clientele has a fixation on hair even if fragrant shampoos and conditioners are absent. Everyone aches to be transformed, hopes for some magic from the experts.

Unlike a trip to the hairdresser, wearing trackie pants and t-shirt to be beautified for a glad-rag event later in the evening, I take great care preparing for an all-day stint in the Chemo Room at Cabrini Hospital. Personal grooming necessary to feel good, clothes chosen to lighten spirits. A whiff of antiseptic with metallic and chemical strains assaults the nose and salivary glands, intensified by the pungency of rubber aprons and gloves. Amidst this proliferation of hospital smells, diligent nurses measure each person’s dose of poison for the day.

I’ve massaged copious moisturiser into skin and discharged several sprays of perfume to mask the clinical and industrial odours wafting around the armchairs, where even the white freshness of laundered pillowcases hint at harsh detergents.

Turban or scarf selected with care so I can pretend to be Maggie McNamara in Three Coins in the Fountain or Sophia Loren in Sunflower. Acetone from the black polish layered on brittle fingernails the night before still teases my nostrils. I hope the effort will save them from disintegration considering the treatment already wreaks destruction on my scalp.

If a real hairdressing salon, I’d sue, but I’m told bald is beautiful and a more common ‘hairstyle’ today than years ago. I’m a reluctant convert.
Nurses squeak a metal trolley over the gleaming waxed floor, a testimony to the courageous cleaners’ care. They too work in this dangerous environment, put themselves at risk of exposure. The waste receptacles of bright purple and yellow, scream danger as I am hooked up to the IV machines beeping loud and insistent as prescribed concoctions are programmed.

I murmur appreciation as the sweetness of mint-scented buttercream drifts from my feet where Marge, a regular volunteer, caresses and smooths. Closed eyes and a huge sigh tunes me out, as valium laced relaxants transport me to a far-off tropical beach. My destination any of the idyllic scenes depicted in the array of paintings decorating walls and softening the harsh reality.

Music flows from my iPod and John Denver reminds me Some Days are Diamonds and Some Days are Stone. Without thinking, I feel where my breast once was and tears well again. Marge senses me tense, encourages me to concentrate on the healing rhythm of her massage – or we could discuss the latest book her bookclub has chosen – have I read The Guernsey Literary and Potato Peel Pie Society novel? A joyful book celebrating how reading brings people together, affirming messages about the strength of the human spirit and the value of relationships, even unexpected ones.

In the past, a trip to the local hairdressing salon referred to as a life-saver, but the Cabrini visits have actually saved my life. Each trip I’m challenged by the stories shared by other recipients: tips to adapt to loss, shared fears and tears, deliberate efforts to laugh, and always admiration at the dedication of staff.

Life will never return to what it was before breast cancer and I may never find the person I was, but surgery and chemicals triumphed to keep me alive. Hair regrows and protheses improve – I’ll just dig deeper for the diamond days.

One wonderful diamond day was the night the girls took me to see Neil Diamond. Lost in the music and flanked by Anne and Mary Jane, I swayed to Song Sung Blue and other numbers. The wonderful evening concluded and a complete stranger appeared at our sides. She said, ‘I’ve been watching the love between you three all night,’ she squeezed my shoulder, ‘you’re going to be all right.’

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 There were many random incidents like that – complete strangers coming up to me in the street or in shops and telling me I’d come through the breast cancer and be stronger for it. Supportive friends visited prior to hospital visits to cheer me up, remind me that sisterhood is powerful!

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Courtesy of the ABC, I won a lunch date with NZ cooking guru Annabelle Langbein. I may take her up on an invitation to visit her farm one day!

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I returned to work and coped better after an 8 week stint with Encore, a wonderful program that helped me regain body strength and my equilibrium.

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I walked the Larapinta Trail, camped in the desert, and reflected on my life and future.(The story of this journey still to be published.)  The last day in the desert I texted my daughter: “Yay! I can feel the wind through my hair.”

 My hair almost normal when I farewelled daughter, Anne on her travels to North America in July 2011. Twelve months still to be reached, but the worst was behind me – I hoped. More up-lifting news of  a student achievement award and receiving my master’s degree helped too!

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I ‘m praying nightly that my friend in NZ will come through her cancer’s return and recover quickly to enjoy life again. I pray too this depression and foreboding I feel will pass…

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The Writerly Self – A Reflective Essay on a Personal Journey of Professional Development

‘Writing about writing is one way to grasp, hold, and give added meaning to a process that remains one of life’s great mysteries… the moment of exquisite joy when necessary phrases come together and the work is complete, finished, ready to be read.’

writers by the bay - anthology 1, 1997
writers by the bay – anthology 1, 1997

For as long as I can remember, I’ve been engaged with reading and writing. In school, ‘to be a writer’ the first and latterly the only desire expressed whenever asked ‘what career do you want?’ At high school during the end of the sixties the education system, and indeed society, acknowledged females could dream of a career and not a job, however, the proviso ‘until they married to produce the next generation’ was implied.  Germaine Greer’s The Female Eunuch opened up an amazing new world of questions and ideas.

My working-class migrant home and public high school considered creative writing something done in your spare time; innate talent may lead to ‘discovery’, but rarely a financial success. No courses teaching the craft existed as far as I knew and the feminist rewriting of the male-dominated canon of Australian fiction did not begin until the late 1970s. Parents and teachers assumed ‘journalist’ and ‘writer’ interchangeable.

So, I studied history (another love) at university, travelled, worked at various skilled and semi-skilled jobs, married, had children, started a writing group, became involved in schools and the community, cared for my dying husband, devised courses and began teaching, and always kept writing: academic assignments, articles for magazines, newsletters, stories for family, poetry for myself and others, letters, postcards, haphazard journal entries, lesson plans, even some imaginative creative pieces. Enthralled by the power and beauty of words, I tried to harness the thoughts and stories swirling in my head.

No passion has been as constant, as true as this love‘.

I enrolled in the Master of Arts (Writing) after encouragement from Glenice Whitting, a member of Mordialloc Writers’ Group. A trusted ‘critical’ friend, Glenice finished a novel, won a literary prize and launched her book at the Writers’ Festival after studying a similar course at Melbourne University. This inspiring journey of achievement culminated in a PhD (well done Dr Glenice Whitting) and the completion of another major writing project.

Each fortnight, workshopping at our local neighbourhood house the group gained valuable tips to improve our writing when Glenice shared philosophical and theoretical ideas from her readings. This generosity, found in the Mordialloc Writers’ Group contributes to the quality of each other’s work. The listening, the absorbing, the constructive feedback, the valuing of learning and always striving to be better writers.

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In 2010, with Glenice’s insistent ‘do it,’ I took the plunge and enrolled at Swinburne University: to focus on my writing dreams, to transform entrenched habits and improve my craft, stretch reading horizons, and move out of my comfort zone by seeking help from more accomplished writers within and without, academia. I hoped the experience would make me a better teacher too!

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The online course suited family, financial, and work commitments. However, returning to tertiary study after almost forty years’ absence, a challenge with difficulties I didn’t foresee! The volume and academic style of most set readings confronting and at times overwhelming. Academic texts needed examination, deconstruction and clarification. What did they mean, if anything, to my writing life and style? This deep reflection of my work a new concept, as well as being time-consuming and requiring discipline, but two years in a life of over half a century didn’t seem much of a sacrifice – or so I thought.

I embraced new technology with limited expertise, trusted disembodied relationships with tutors and students, many living Interstate and in different countries. Despite being ‘screen’ tired with a mind ticking over like a Geiger counter, the joy in writing I sought returned, albeit slowly. I began to reflect on the process itself when the initial shock of ‘settling in’ was compounded by a diagnosis of breast cancer. Life is full of surprises, but perhaps the biggest surprise is the strength we find within when needed.

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A new world beckoned. With help and support from family and friends, I adapted my lifestyle, extended boundaries and learnt the true meaning of flexible hours: working into the night, forgetting what television looked like and leaving more of the day-to-day running of the house to my daughters. Although always open to change, this unplanned border crossing was never foreseen for my late 50s. On reflection, the journey not only proved worthwhile but gave me a fantastic focus and distraction through a health crisis I wouldn’t wish on my worst enemy! In modern parlance, working towards and achieving my master’s degree a definite ‘game-changer’.

The richness of other student contributions gave new perspectives as well as exposure to a variety of genres. Could I write a suspense novel? A gritty screenplay? A monologue? Poetry? Be a short story writer? What about creative non-fiction? Historical romance?

I had been writing every day but not necessarily the writing I wanted to do. My goal of self-discipline to create time to write every day on a project I desired, and not because a deadline loomed, seemed elusive. The intensity of study, the volume and regularity of the submissions required, left little time for stream-of-consciousness writing or spontaneous creativity, but there was excitement and developing friendships amongst all the learning.

The concepts of dramaturgy and frame theory were new to me, although perhaps I’d been applying frame theory and considering dramaturgy for years without knowing the theoretical name. I visualise each scene before I write and edit – almost as if watching it on television or acting in front of a mirror – the preferred method of Charles Dickens who created characters and acted them out to perfect expressions and voices.

From the beginning there was a very strong connection between the oral and the literary in Dickens’ art.”

I work out the order of the detail in my short stories to help with sentence structure and avoid dangling modifiers. I’m an ‘outliner’, not a ‘pantser’. The dictionary defines dramaturgy as ‘a theory, which interprets individual behaviour as the dramatic projection of a chosen self’. I create characters, put them into situations, and imagine how they walk, talk, and act. I draw on my observations, but also personal experience. Some see dramaturgy as ‘a way of understanding and analysing theatrical performances… to help us understand the complexity of human interactions in a given situation’.

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As a people watcher, I observe and scribble in a notebook, taken everywhere. An event, a smell, sound or person triggers the muse. Later, these pages filled with character profiles, plus ideas for prose and poems become details in stories. Sometimes I’m inspired and start writing the story on the train or in the cafe if I can write undisturbed.

The bones of a story grow. Writers must be curious and record observations because this advice is repeated in almost all articles and books on the craft of writing.

On the city-bound train , two deaf people are having an animated conversation. Six metal bangles on the overweight woman’s right arm so tight they don’t jangle as she waves her hands. The man unkempt, yet an expensive camera hangs across his chest. Are they tourists tired or stressed from travelling? What is it like coping with such a profound disability on public transport where commuters rely on announcements over the tannoy? What if the train breaks down?

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” ‘Playing our parts.’ Yes we all have to do that and from childhood on, I have found that my own character has been much harder to play worthily and far harder at times to comprehend than any of the roles I have portrayed.”

Bette Davis 1908-89

I prefer this quote from Bette Davis to the Shakespearean ‘All the world’s a stage‘. I’ve struggled over the years being dutiful daughter, loving and supportive wife, responsible, nurturing mother, loyal friend and sister, diligent employee, interested teacher… ‘playing’ roles yet aching to be a writer and wondering how well I ‘perform’ when my heart and brain are focussed elsewhere. Everybody is an actor on a stage Shakespeare called ‘the world,’ however, for most people, the stage is a much smaller ‘my life’.

Shakespeare’s gift of using the stage as a metaphor for living clever because everyone is born (makes an entrance); dies (exits) and plays different roles from birth. Researching to find the context for the now clichéd quote I’m sidetracked as usual ( a major failing). So many Internet sites and tomes from bookshelves cite, deconstruct, dissect, and revere Shakespeare.

My ego wonders if in the future anyone will read my writing. Can/will I ever write anything as profound or memorable as the speech by the melancholic Jaques in As You Like It? The ‘seven ages’ of man condensed in cynical terms in a limerick by British poet Robert Conquest:

Seven stages, first puking and mewling,
Then very pissed off with your schooling;
Then fucks and then fights
Then judges chaps’ rights
Then sitting in slippers, then drooling!

When I think of writing Dad’s story and his love of pithy poetry and the verses he made up, I wonder if I should frame each chapter around poetry. Introduce the stages of his life using either a poem or song by Robert Burns, his favourite bard. I reject the last line of Conquest’s limerick. Dad’s dementia and the long period of emotional stress the family experienced will not be reduced to such an image. My Father’s life should not be defined by the changes wrought by illness and ageing.

I want my world to end with a ‘bang’ not a ‘whimper’ to borrow from T.S Eliot. A couple of my short stories work as ‘faction’ so I will keep experimenting. Sometimes it’s easier to fictionalise traumatic events or deep feelings, be the cold observer rather than a participator!

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An article on Dramaturgical Analysis gave me a new perspective and some good ideas on a play about the environment I was asked to write for Grades 5 and 6. An idea to teach the children about environmental sustainability and along a similar theme to Sense and Sustainability: A Fable for our Times. If developing the play, I’ll consider the ideological frame as well as the structural frame. I want the children to identify with the issues and realise they can make a difference. I hadn’t considered using a myth or folktale to provide the organisation for ideas, but appreciate how the reference to well-known stories may add depth to the script and enrich an audience’s understanding. In Australia, because of our multi-cultural population, there are myriads of folk tales to draw on.

It’s a steep learning curve to look through a playwright’s eyes and use dramaturgical analysis as a critical tool, but I enjoyed finding out about the proscenium arch and other terminology associated with theatre; how a play will be presented and the difference images and symbols make. The proscenium arch is the performance area between the background and the orchestra or between the curtain or drop-scene and the auditorium. Many innovative ways to use this space present themselves.

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In a piece of happenstance, I won free tickets to the Victorian Opera’s interpretation of Chekhov’s The Bear. There was a split stage, which gave wonderful visual framing ideas. Aleatory, another new word learned: ‘technology is used to suppress aleatory results‘. Aleatory is defined as ‘depending on the throw of a die or on chance, depending on uncertain contingencies or involving random choice by the composer, performer, or artist.’ Learning to use the Internet for research, it seemed the exact opposite sometimes.

I typed ‘workhouse’ into Google for family history information and came up with 3,460,000 links in 21 seconds. No doubt the number and speed increased since 2010. By only using the word, many irrelevant results and often random associations appear. To save time and get the most benefit out of the Internet I learned to be smarter.

The exposure to other writers in the course led to discussions about books by ‘colonial’ writers revealing heritage and raising issues of identity. I determined to reread many loved favourites as a writer as well as a reader, especially after a tutor asked, ‘to what extent do white writers have to consider their colour as writers?

A difficult question to answer as a white woman, who has always lived in a free society. I agree with bell hooks, there is a ‘link between my writing and spiritual belief and practice… how our class background influences both what we write, how we write, and how the work is received.’

Most white writers don’t give their colour a second thought if they live where they are the dominant culture. However, an Australian writer Harry Nicolaides while living in Thailand was incarcerated for insulting the Thai royal family in his novel. I would think many writers living in some Islamic countries need to be careful. In Saudi Arabia, Afghanistan, Egypt, Iran and even Turkey imprisoned journalists and writers make the news. We tend to think of Europeans being the main colonial powers in recent history and the colonised non-white, but in the 1930s and 40s Japan expanded its empire. Even in recent times, the Indian sub-continent and African continent have more than their fair share of colonial trauma.

To write my family history with an Irish mother and a Highland father the experiences of the Irish and Scottish populations must be considered and the effects of England’s colonial behaviour. Dr Johnson’s view in his journal, Journey to the Western Isles of Scotland,reveals a narrow, disdainful individual, whose sojourns into that which is unknown to him may be compared to the impressions of those first Europeans who penetrated the African interior, socially placing its inhabitants as inferior.’

The Highland Clearances and the aftermath sent many people, including some of my relatives to Australia. They lost their land and came out here to displace the indigenous population. I’d like to explore this sad irony and grave injustice in my writing. You can’t rewrite history, but you can examine the story from different angles and make an effort for a balanced account.

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How does my hybridity affect my writing? I feel like an uprooted tree with memories and attachments to many places. I travelled a lot when younger and hope to do so again. I struggle to keep a journal yet when travelling, writing became second nature, especially letters home. Boxes of paraphernalia sit in the garden shed to be turned into stories ‘one day’.

I found a handful of old postcards after an aunt died and a fascination with a first cousin of my Father’s began. He bears Dad’s name and is buried in Egypt – another nineteen-year-old casualty of Gallipoli. I empathised with Hélène Cixous when she stood and cried at her grandfather’s grave, a person dead long before she was born – a photograph in an album, a family legend.

All biographies like all autobiographies like all narratives tell one story in place of another story.

I wrote a short piece of prose about discovering our family’s ANZAC, but further research makes the story change. I learnt his parents still spoke Gaelic and try to imagine what he thought in the trenches of Gallipoli fighting beside Scots as well as other nationalities. Did he identify as an Aussie? Did he think himself noticeably different?

One tutor asked, ‘What do you think of the idea that writing itself is a process of self-knowing… we come to know ourselves through the things we write? Post examples of your ‘voice’ to illustrate how you use language.’

Are the paths our writing takes us down, paths to self-knowledge? Often I surprise myself when I read a poem or story I’ve written. I ponder: did I write that? Even when I think I’m in control of the pen and words, my writerly self takes its own path!

I’m an ‘inheritor as well as an originator’ and like Bell Hooks, I believe my ability and desire to write are blessings. I am the keeper of the stories of parents’ and family, in particular my mother’s. Mum spoke into a tape recorder for several hours telling ‘herstory’, and I am immensely grateful we spent time together to record the events she thought important. It’s still a painful task to listen and type. Mum’s voice triggers strong emotions; fingers freeze on the keyboard and tears flow. Complicated grief can last a long time, her death still feels raw.

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A sense of ‘voice’ crucial in writing therefore I want to make sure it is Mum’s voice and not mine when I write her story. Yet, as I record extracts for a women’s memoir site in America, and life story classes here, my story is being written too. I know my voice changes depending on what I’m writing, sometimes from a conscious effort because I don’t want fictional characters to sound like me, or all the factual characters either!

Years ago, my brother George rang me after reading a story of mine in Mordialloc Writers’ third anthology, Up the Creek With a Pen. ‘Mairi, I had to read it twice it was so good. It’s very different from your other stories, I didn’t even pick you as the writer.

Up The Creek With A Pen, anthology 3, 2003
Up The Creek With A Pen, anthology 3, 2003

This ‘backhanded compliment’ made me go back and read the story again! What made it so different? The topic? The male protagonist? The language? The pacing? Another step along the road of maturity in the craft; learning to pay more attention to how the words sit on the page?

The craft of writing is what I enjoy the most; it’s my comfort zone and I know this is why I love teaching creative writing because for a few hours a week I share my passion for the English language, its nuances, its flexibility, the chance to experiment, and the fire of imagination.

I recall a student comment about family history, ‘It’s funny though, that the stories we tell the most are often the hardest to put to paper. Sometimes the best stories are the ones we are so comfortable with that they live and grow with us and so writing them is counter-productive.

As I interviewed Mum over four years, I noticed repetition in her stories, yet the telling was different. Dad, an entertaining raconteur repeated the same tales with or without embellishments. I don’t see writing them down as counter-productive, rather I consider the stories are part of our family lore, they’ve made an impression to be retained for a lifetime (in my parents’ case, 80 plus years). I want to record the memorable ones, work out why they remain important. Retain them for future generations because idiosyncratic tales make each family unique. I regret not recording Dad before Dementia robbed his memory.

Another student, an accomplished writer commented on poems I’d written, ‘I suppose I’m looking for you to take it one step further – is this the only side of Mum? What brings you to remember? and similarly, for Journey home – are you there? What’s it feel like? I want some personal insight or big picture analysis.’

For Mum
Mairi Neil
I think of you baking scones,
your floral apron streaked with flour.
Ingredients never measured,
just swirled together
by experienced hands,
used to work. And gifting love.
The soft splat of dough
against Formica,
the thump of rolling pin,
scrape of metal cutter,
and then,
the leftover scraps
patted to shape a tiny scone…
‘For you – this special one,’ you said.

The Journey Home
Mairi Neil

He squeezes past me
on the escalators
at Melbourne Central
overweight and red-faced
wheezing in time
with the clunk
of her strapless high heels
clattering like hooves
on cobblestones of old

He flings a challenge
over his shoulder
‘The train leaves in one minute!’

wheeze kerplunk clunk clunk
wheeze kerplunk clunk clunk

She puffs and pants
heels galloping
breath exploding
the momentary hesitation
as the ticket machine swallows
and reluctantly spits tickets
into waiting fingers
frantic eyes balloon
at more escalators
to be negotiated

wheeze kerplunk clunk clunk!

Mum was not just the cook, nor indeed ‘just a mum’. I’ve spent a long time (perhaps too long!) researching to ensure her time in the army, as a nurse and many other experiences BC (before children), as well as her achievements and contribution to community and church in Scotland and Australia, are recorded. The jigsaw of her life completed so people understand the big picture. We are all complicated human beings.

I wrote the poem about the scones as a special memory to read at mum’s funeral and it struck a chord with others to be published elsewhere.

‘Although I have not written in this journal for a month, storytelling has been an active and dominant part of my life during this time.’

Skywalker Payne

My writerly self understands imagination works overtime, characters and plots in abundance go unrecorded or not shared with writing buddies. Family history/tales come alive when we recount parents’ or our own lives to children and there’s an urge to record them for posterity. That’s what writers do.

Anais Nin, Katherine Mansfield and Henry Thoreau achieved much in their journals. The beneficial aspect of keeping a diary well-documented. It can be the start of poems, prose, and novels. One of my students kept a journal for 35 years before substituting it with a ‘blog’.

I often think of ‘the women writers whose work and literary presence influences me, shaping the contours of my imagination, expanding the scope of my vision.This blog could help me too.

Novels may still be unfinished, stories lacklustre, poetry mere doggerel – some days I feel everything, but a writer. The longing to write what I want instead of what seems to be needed (by deadlines, briefs, other people) exists. A deep yearning drives me to counteract the reality of creative writing as something squashed between other life commitments. To feel gladness, not just relief, when the words are on paper, will probably always be a difficult goal to achieve.

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I’ll keep scribbling and hoping it will gel one day.

Vale Dear Friend – Have You Solved The Mystery of Death?

The sun exactly at noon is exactly [beginning to] go down.
And a creature when he is born is exactly [beginning to] die.


Hu Shih, Chinese Philosopher,philosopher, essayist and diplomat

On Saturday night I couldn’t settle. A telephone call from Canberra the day before said Margaret’s death was imminent – within 24 – 48 hours. The vigil of her final hours carried out by  two other friends – the remainder of our “gang of four” – sitting either side of her bed at Clare Holland House hospice each holding one of Margaret’s hands.

“You’re too far away Mum to do anything , but worry. Try and relax… we care about you.”

I started a jigsaw puzzle after my daughters insisted I focus on something pleasant. Their words of wisdom, sympathy and nurturing an appreciative role reversal.

“Remember your last few days together in January, focus on that image and all the good times you’ve shared.”

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Margaret’s dying had occupied thoughts and shaken emotional equilibrium for weeks. Daily text messages or phone calls from close friends, an ever present reminder someone I’d known since teenage was dying from breast cancer – a disease my body was fighting successfully – so far. Margaret’s lobular cancer, detected too late had spread to her brain stem and groin. Life seemed unfair and good health such a lottery!

I’ve experienced grief many times, especially over the last few years.  Friends and family farewelled; the most poignant goodbyes being husband John and my parents. I understand about complicated grief. For several years, I could identify with this state.  I appeared to “get on with life” , but my pain never fully receded into the background or diminished. It was even physical, with a permanent pain in my heart as if a stone lodged there, pressing its weight, interrupting normal rhythm. I became the great pretender, perfecting the art of an outward smile without any inner joy.

To endure life remains, when all is said, the first duty of all living beings… If you would endure life, be prepared for death.


Sigmund Freud, Thoughts for the Times on War and Death

Thoughts and memories of those I’ve lost circle in my head on a permanent loop. Each death a reminder of the one before: I don’t believe my yearning and longing for John will ever disappear and memories of others can appear unbidden, triggered by a smell, a piece of music, a photograph, a snatch of conversation… but I do “get on with life”!

And so when the call came at 6.00am Easter Sunday, to say Margaret had died the night before, I knew exactly when the moment had come. On Saturday evening, just after ten o’clock I’d had a strong urge to go outside again and watch the progress of the lunar eclipse. As I stood watching the clear night sky, the angst and worry about Margaret’s dying dissipated. I felt she was at peace, free from suffering and earthly worries .

She breathed her last breath at 10.15pm, April 4th 2015, 25 days short of her 68th birthday. Mary Jane’s photographs capturing my thoughts that Margaret joined all the others who have gone before, including her parents. “Who would have thought dying was so difficult,” she had whispered last week, insisting she saw her parents waiting.

That waiting now over.

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Into the darkness they go, the wise and the lovely.

Edna St. Vincent Millay

After I received the news, Mary Jane and Anne bought me a beautiful orchid. Tall and willowy, like Margaret, a wonderful gift of life!

” To plant in Margaret’s memory, Mum.”

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Later, I went for a walk by the sea with a writer friend – another life-affirming pleasure and always a solace to me. Although it’s autumn, abundant signs of fresh growth promised new life.

Creating Memories

My garden reflects the rich tapestry of family life. The plants are a mixture of immigrant and native, just like us. Some are already memorials. Two sturdy bottlebrushes (callistemon linearis) remind me that two mothers grieve for sons. The wattle, as straight as a mast, thrives, but reminds me of a friend who died in despair. A rose from Coydon a link to the family home with Mum and Dad. There are cuttings from friends, plus birthday or appreciation plants nestling beside Mother’s Day flowers, nurtured by tiny hands.

Each has a story.

The rosemary bush by the mailbox extra special, an unexpected gift from a lady whom I‘d never met.  In September 2002, when John died after a heroic struggle with debilitating lung disease, a small healthy rosemary plant arrived with prayerful condolences.

In ancient literature and folklore, rosemary is a symbol of remembrance. It’s also an emblem of fidelity with a belief that its properties improve memory. Rosemary has particular significance for Australians because it grows wild at Gallipoli.

Rosmarinus Officinalis (‘Dew of the Sea’) is an evergreen shrub of the mint family. John loved the sea and often shared stories of his 16 years in the Royal Navy. His affinity with the sea led me to scatter his ashes at Stony Point. He’ll revisit many shores, including Mordialloc. And as the girls and I travel the world we know he’s always near.

The girls made tiny sprigs of beribboned rosemary for people to take home after John’s funeral, a custom since 1584. Rosemary even gains a mention in Shakespeare’s Hamlet when Ophelia, decked in flowers said to Laertes: ‘There’s rosemary, that’s for remembrance.’ Shakespeare’s plays another love John and I shared – the ties that bind. So many memory triggers…

My garden will always be a work in progress. John’s announcement in 1984 when we bought the house prophetic, ‘the garden will have to survive on neglect. There’s enough to do inside to keep me occupied for years!’ However, like love, the rosemary flourishes and many passers-by and neighbours pick sprigs for their Sunday roast and other dishes. The other plants thrive too, like me they are low maintenance!

The ‘renovator’s delight’ garden still has the original couch grass with a small clump of Strelitzia regina (Bird of Paradise) and a bluey-mauve Blue Moon rose, shrubs spectacular when in blossom. Acquired plants fit the soil and landscape of the area; flora enriching the habitat for native birds, butterflies and bees. Drought-tolerant plants minimise water use and are wildlife friendly. There is beauty inherent in the evergreen native trees and indigenous plants produce the harmony I desire – native and exotic.

Bees and butterflies buzz and flitter from agapanthus to lavender, from rosemary to geraniums. Wattlebirds feast while insects scurry on lobed dark green leaves. A ringtail possum nests nearby. Blazing red hot pokers (kniphofia) create a rainbow in autumn.

Each day as I check the mailbox, or go for a walk, the rosemary reminds me that ’flowers seem intended for the solace of ordinary humanity.’

I ponder where I’ll plant Margaret’s orchid to reflect on life and feel blessed.

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Death is an absolute mystery. We are all vulnerable to it, it’s what makes life interesting and suspenseful.

Jeanne Moreau

Waiting Rooms, Patience and Patients…

It is my annual check-up with the breast surgeon in Brighton. I made the appointment for 8.30am because in the afternoon I have  my last class for the year at Godfrey Street, Bentleigh. Of course, the traffic has to be horrendous. Patience is a virtue, but I keep this thought to myself as my daughter curses the idiots abroad. Every set of traffic lights turns red as we approach – it’s always the way when you’re stressed or pushed for time.

Australia is a country in love with the car and with governments reluctant to invest in public transport, traffic congestion is the norm all over Melbourne, especially during morning and evening peak hours. Mary Jane drops me off a few minutes late and goes hunting for a parking spot – as rare as gold in some places, especially around shopping centres, railway stations, public buildings – the places we all want to go! The cluster of medical specialists in Brighton are popular and never short of patients. As I hurry into the waiting room I envisage MJ’s face reddening, to match the colour of her little Hyundai as she trawls the nearby streets for a parking space; frustration feeding her worry.

My daughters fear this visit as much as I do. An unforeseen complication after my initial mastectomy four years ago led to an emergency operation and they had to approve refusing life support (my wishes) and wait a harrowing few hours to see if I survived.  Traumatised onlookers, they are haunted by memories  I don’t have because of effective modern anaesthetics.  Carers now have more recognition and much deserved praise, but there’s still a lot we could do within primary health care to support them, especially when events turn dramatic!

So, here I am again – twelve months disappear fast. I remember my Mum lamenting time passing more quickly as you age – at least I’m down to annual visits…

Christmas tree in the corner, bamboo stars in the window, tinsel trailing along the windowsill. Christmas filling a corner of the waiting room for the patients, brightening the severity of the black leather lounge suites interspersed with black vinyl chairs. My hazel eyes are drawn to the silhouette of a bird sitting on the electric wires outside the window. A crow? A premonition? (I have a lot of my Irish mother in me and the Scots are no slouches when it comes to being fey!)

From the corner of the room a ghetto blaster tuned low, plays music – not predictable Christmas carols, but soothing melodies. I recognise the song and struggle to suppress the tears lurking behind my eyes,  raw emotion threatens to undo the calm exterior I  portray on these visits. I take a deep breath, this is a positive omen, surely?  John is with me as our special song wafts across the room, Always On My Mind...  his spirit definitely here!

I glance around the room. There are two couples and three single women, including me. Another couple sit outside the Pathology Lab. I don’t think we are all waiting for the same doctor, he’s usually well organised. However, it is Christmas and the long summer break ahead, a time of year always difficult to schedule.

The reception area filled to capacity; six receptionists working hard, including a male, a new addition since last visit. They’ve claimed a little of the Christmas atmosphere by stringing glittering gold balls along the counter. One young lass even has tiny reindeers dangling from her ears.   The couple beside me are called into pathology and one of the women is led into a nearby room. The doctor works from two rooms. This is year four for me, I know the drill. He deals with one patient while another is disrobing for examination in the other. Almost immediately another woman is called to pathology. The doctor’s efficiency won’t let me down, it will soon be my turn.  I try not to stare at the couple leaving. She is pregnant and they have a toddler. Cancer sucks.

Waiting Room – such an apt title and great writing prompt. In fact, I gave the following scenario (courtesy of one of the many writing prompt sites on the Internet) to my writing class this week. A surprising coincidence because I plan my lessons well in advance. Perhaps my sub-conscious was at work to create such serendipity!

Waiting room
Three strangers are sitting in a doctor’s office waiting for their appointments. A patient’s bag tips over on the floor and something falls out. What is it? What do the characters say to each other that makes this a significant moment in their lives?

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How many waiting rooms have I (and many others) sat in during a lifetime? Dentists, doctors, hospitals, train and bus stations, job interviews, government departments, council offices, schools, universities, funeral parlours … enough to become a patient with patience!

I try to remember the first waiting room and decide it was the dentist’s and I determine to block that 1950s experience out because I can still taste the horrible rubber mask, smell the gas and feel the bitter mouthwash as my blood swirls down a tiny sink attached to the chair.  I can hear Mum promising to buy me ‘something special for being a brave girl.’

There were no childhood visits to the doctor because in Scotland our family doctor, Dr Reid,  made house visits. He delivered me at home.  Scotland also had a system of health visitors, district nurses a la the popular television series Call the Midwife. No waiting rooms filled with harassed mothers and hyped up, bored, or crying children.

Dr Reid was a regular visitor to our house in Braeside, Greenock and had a penchant for Mum’s baking. A fresh pancake, Irish soda bread, scone or fairy cake served with a cup of tea whenever he called. Mum was a ‘tea jenny‘ her greeting to all visitors, ‘a cup of tea?’

Another reason for Dr Reid calling frequently was my parents’ generosity with the telephone. When making visits in our area, Dr Reid would check in with his surgery or family, or perhaps arrange an ambulance or book people into hospital – all from our phone. Today with the proliferation of mobile telephones it is sobering to recall a childhood where ‘being on the phone‘ was an expensive luxury for most, and a rarity in working class homes.

My parents made the decision to have a telephone because it would allow Dad to work more, therefore a good investment. A train driver easily contactable was offered more shifts – an important fillip to our budget. Supporting a wife and six children never cheap!

Number 35 Davaar Road was the first house in the immediate housing scheme to get the telephone connected, and to my knowledge the only one  to generously share the instrument. (Some people left coins in the money box that sat beside the phone, but not always. Calls were timed therefore many people were reluctant to risk big bills by trusting others.)

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Mum had a clatter of eager messengers. My older siblings ran to fetch or tell neighbours a relative was on the phone, they had to report to work early, travel arrangements were changed, or a myriad of other personal messages. Mum was privy to emergencies, planned celebrations like marriages, sad news of illness and death, joyous (sometimes) announcements of pregnancies, job offers, exam and scholarship results, visiting relatives, holiday plans… the full gamut of community life.

A natural disaster in America meant a distressed neighbour worried about her sister. Mum rang the US Embassy, got a number to call for information, and after several anxious hours, exacerbated by the time difference, reached the neighbour’s  sister on the phone. Those women never forgot Mum’s kindness and continued to thank Mum every year in a Christmas card until their death. There were other dramas witnessed – all because of a revolutionary communication tool, which in my lifetime has been transformed beyond recognition.

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Today, with instant communication across the world via satellite, the expectation everyone has either a mobile phone or access to the Internet, reflecting on my Scottish childhood confirms the past is indeed ‘another country’ in more ways than one!

A receptionist ushers me into a room for the next stage of waiting for the doctor.  I put on the gown with the flap open at the front. My surgeon is one of the most respectful, professional men I’ve met on this journey, but despite his manner I always feel vulnerable clutching the white cotton gown at my chest, sitting in a chair staring at the examination table and waiting…

It is good news. Another year notched up without the cancer appearing in my remaining breast or other parts of the body (metastatic disease). I can breathe normally. I text my daughter and wait outside looking skywards and soaking in the sunshine. The bird on the electric wires not a crow, but a  butcherbird (Cracticus nigrogularis) that has a beautiful call. I hope he will sing. This patient with patience waits and is rewarded. Another year to feel blessed.

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Health, Research and Giving Back

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.  Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.  ~Susan Sontag, Illness as Metaphor, 1977

How true! And after my sojourn with breast cancer I’m determined to try and keep my travels in the ‘kingdom of the well’. However, life can be a lottery: travelling on public transport, or teaching in community houses as I do, contact with the public can mean a random sneeze or cough transfers bacteria or virus. Then there’s genetics –– everyday it seems scientists discover links explaining why and how illness or disease occurs and whether family inheritance and/or environmental factors determines which passport you hold for the passage through life, and whether you can change your ticket. In the developed world, most of us are fortunate to choose our own lifestyle and our choices impact on our health.

Most people understand the value and importance of medical research and probably all know someone who has benefited from ground-breaking discoveries, many of which save lives, improve the quality of lives, and lead to huge advances in healthcare and public wellbeing. Various sciences need to be encouraged, developed, supported and sustained within our universities if medical research is to be advanced. There is an ever-growing patient demand for more effective treatments and care pathways to improve our health and wellbeing, and clinical science contributes greatly to ensuring the effectiveness of clinical care, but human guinea pigs are often necessary.

Almost ten years ago, I began volunteering for various research projects at Swinburne University of Technology and Melbourne University. The majority of the projects carried out by PhD students and their supervisors, and most related to Alzheimer’s disease, dementia and ageing, although there were some related to arthritis. Putting my hand up for a variety of relatively non-intrusive tests is not entirely altruistic –– with a family history of cardiovascular disease, diabetes, dementia, arthritis and cancer –– I want to encourage clinicians and research-active physicians to evaluate the nature of the information that they are provided with from academia and apply it to improve current practices.

Even before I was diagnosed with breast cancer I had joined Lifepool, Australian women finding answers,  because my paternal aunt had a radical mastectomy in 1962. I lived with the fear/premonition that I was at risk. Unfortunately, there was no data collected on my aunt to be useful in my case. Breast cancer is assumed to be passed on through the maternal line, but it would have been interesting to investigate if there was a genetic or lifestyle link. Therefore, since my own diagnosis, the data they collect about me takes on greater significance. I have two daughters –– if there is the slightest chance researchers can prevent them developing breast cancer, I want to be part of that solution.

On Friday, I agreed to take part in a study exploring changes in blood flow in the brain of people of different ages using a new technique of inhaling carbon dioxide in room air. The project, designed to help researchers see how the brain changes with age, could lead to greater understanding of age-related cognitive decline in memory and thought processes. An MRI scan measured changes in blood flow in the brain while I performed finger tapping tasks, and then briefly breathed the carbon dioxide mixed with room air. There were many safeguards to this experimental research, a long checklist for suitability and a nurse and doctor nearby. The process took three hours because of the necessity of blood pressure and heart monitoring before and after the MRI, plus cognitive computer tests, breathing monitoring and an ultrasound of the cerebral artery.

Other trials, investigating memory, that I’ve taken part in over the years, involved green tea, special diets, herbal pills and numerous computer cognitive exercises and mobility tests. I’ve had caps sprouting electrodes gelled to my head, requiring a shampoo (but not set) before I left the building, and fasting and blood tests along with substituting different foods in my diet and keeping a record of food and drink consumed. All in the name of science with a lot of trust needed between researchers and participants. The other morning, I changed into partial ‘scrubs’ and through observation and conversation became part of a very different world for a few hours, reminding myself that all experiences are ‘grist to the mill’ for writers.

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Lying in the MRI scanner, head encased in a plastic helmet to ensure I kept still, I listened as the machine grunted its way through the steps to capture images. The ear plugs limited the sound, but the vibrations and persistent grinding could not be ignored, even with a David Attenborough nature DVD to distract me. I managed to suppress claustrophobia and cope with the experience by letting my mind wander and my imagination run wild. That overactive imagination criticised in childhood does come in handy!

I reminded myself that being my father’s daughter, I could easily develop Alzheimer’s disease; this research is personal. My Dad developed insulin-dependent diabetes in his 50s, suffered minor strokes in his 70s and was diagnosed with dementia and in a nursing home by age 76, where he lived for the last seven years of his life.

Writing about his experience and my feelings and fears, and ultimately about Dad’s life to try and reclaim the father I loved from the shell of a man he became, helped me survive those seven years. They were tough emotional years because my husband, John was diagnosed with asbestosis at the same time and told his lungs were so bad that it would be unwise to operate to correct the effects of a broken neck from a car accident. He’d have to live with the pain and limitations of a severe curve at the top of his spine, which of course impacted on his deteriorating lungs.

John in his inimitable style came out of the orthopaedic surgeon’s office saying, ‘I have some good news and some bad news. He can make me straight, but there is more than a 50% chance I will be dead straight, and he doesn’t want to take the risk.’

My mouth went dry, my whole body trembled and I clung to John, the pain of his disappointment and my fear of losing him melding to make us an immobile statue of anguish, until the sadness and sobs I had suppressed over the months of hospital and doctor visits, exploded. A scene played out in many hospital waiting rooms. The future too bleak to contemplate. The two men I loved the most disintegrating, slowly, painfully, inevitably before my eyes: Dad mentally and John physically.

A few months after accepting there was no operation to help John, researchers in England devised a new method of operating on the neck not requiring entering through the chest wall. By this time John’s health had deteriorated too far for any operation to be successful or I would have done what countless others have done to find a cure, or save a loved one. Disregard expense and the upheaval and travel overseas seeking the best help available.

Instead, we devoted our days and nights to quality family time, making sure John always had something to look forward to. Stay focused on the future and take one day at a time, our mantra. Writing, my salvation –– I had to earn money and teaching writing helped pay the bills, but it also helped quiet the mind and work through a roller coaster of emotions. It enabled me to keep life in perspective and function each day as a mother –– protecting and nurturing John and our two daughters daily priorities. Unfortunately, assuaging the troubled mind does not always translate to looking after the body and on reflection several health crises, even before breast cancer, could have been avoided, if I had taken better care of myself. Hindsight a wonderful gift!

Two stories were published in Together Alone, poems and other stories for the Anti-Cancer Council’s Daffodil Day, Text Publishing, 1998. One was about John, from his point of view. The Daffodil Day arts awards have become a fixture each year giving a voice to those who have been touched by cancer, either personally, or through knowing someone travelling that road. I’ve been fortunate to win several of their awards for poetry and short stories over the years –– a sad reflection in one way that I’ve witnessed so many people struggle with ill health, but also uplifting because I’ve seen people survive and get on with their lives.

A poem I wrote about Dad was published in Memory Weaving, An Anthology of Dementia Journeys, Poetica Christi Press, 2014. This anthology developed from Manningham Council awarding a Community Development Grant to Wordsmiths, the local poetry group, to explore the issue of ageing, and families touched by dementia. After a series of workshops they sought contributions from the wider community and my poem, and the poem of one of my students were chosen to be included. What an amazing project, weaving the threads and experiences of so many lives to remind us that being human is not just a list of achievements or solely defined by what you do, but a journey creating memories of loss and love and individual histories deserving of being recorded.

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Mammograms and Memories

A reason for my reluctance to host a regular blog has been fear. Fear that the posts will be self-indulgent twaddle, or boring rants instead of relevant, helpful and interesting!

Despite the impression I seem to give, like many writers I lack confidence in my ability and nurse an inferiority complex. “Highly Strung” was the comment teachers made in the school reports of my primary years in Scotland–not sure what that means, except I can remember often feeling nervous and anxious. Mind you, in the 50s when some teachers wielded the strap freely, threw chalk and the blackboard pointer, I’m surprised most of the pupils weren’t highly strung.

Well, today I had an excellent reason to be anxious. It was time for my annual mammogram and ultrasound and although they have a super new machine at Mentone Radiology, which hopefully will minimise the need for biopsies because of the intensity of images it produces, the downside is that your breasts are still squashed as flat as they can make them, and for at least 11 seconds—a longer time than that required by the old machine!

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However, I am grateful to have access to breast screening because it was my birthday mammogram in 2010 that detected cancer. I may not be alive today without that mammogram! So, regardless of the discomfort and pain, please get screened!

In 1994, when Dr Carmen Lawrence was the Minister Assisting the Prime Minister for the Status of Women, Australia led the world by developing a number of innovative health programs for women, such as national breast screening and cervical cancer screening. I and countless other women are grateful to the Keating Government, and subsequent Federal Governments for funding FREE regular screening for women aged between 50-74, the age group most at risk from breast cancer.

Writing helped me cope with my cancer diagnosis and radical mastectomy. They published a story I wrote in Journey, Experiences with Breast Cancer, Busybird Publishing, 2012. My close friend and fellow writer,  Glenice Whitting drove me to Eltham Community Library for the launch. I had finished chemotherapy and had been back at work almost a year, yet when I held the book in my hands and read the first paragraph of my story I trembled, tears pressed against aching eyes and my mouth went dry.

This room is too small. A tiny desk jammed in the left corner as we enter through the door. A four-shelf bookcase laden with pamphlets melts into the right wall and four grey cloth office chairs cluster beside the desk, silent when moved against the carpet, which is another nondescript grey. I think how crowded the room will be when filled to capacity – patient with partner or friend, the doctor and a nurse/counsellor. Or, maybe cosy – it depends on what news is delivered.
Now, there is only Deb, the nurse who has been looking after me. We are waiting for the doctor to return and already I feel claustrophobic. The Venetian blinds are semi-closed on the pencil thin window, but I can feel the chill from the stormy sky threatening hail.
I don’t gasp for air, or take deep reassuring gulps. Instead, holding my breath, I almost stop breathing. Perhaps a subconscious plea for time to stop, even be rewound, will be answered. This morning has become surreal. I can sense rather than see Deb behind me, her chair close enough to be reassuring, or grab me if I lose control. I think she expected me to sit in the chair parallel to the desk, face the doctor, and her but I sit once removed, where a husband or partner should be. Where John should be. I suppress a mixture of emotions: anger, pain, sadness, self-pity, and fear.
The empty chair reminds me I’m widowed eight years. A silent voice in my head acknowledges reality – I’m 57, alone, and no man is going to find me attractive now. I tremble for a moment, an almost imperceptible jerk. Deb leans closer; I can feel the heat from her body and grit my teeth, willing the tears to stay behind burning eyeballs. The ache for John’s strength beside me is making me emotional. I must stop thinking the impossible.

When publisher Blaise van Hecke asked if I would read an extract I could only shake my head, not trusting my voice to function without breaking down. A crack was developing in my Scottish stoicism and the veneer I showed the world of the strong survivor getting on with life. This latest crisis was not a mere glitch, and I was not so strong after all.

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One of my daughter’s friends sent me this message after reading the book:

I just read your chapter. I thought it was beautiful. I am finding it hard to articulate what I mean – it felt delicate – in such a terrible and confronting time, I found it very positive and empowering. There is more than the actual disease,  so many other raw emotions involved. It also helps put things in perspective and appreciate those who we love and care about. I really love your approach and how you express your experiences – you are such a strong and wonderful person. I think cancer is terrifying, I managed to smile and feel a sense of peace/calm, it felt like you were in control and not about to crumble. I feel so grateful to have read your story, and many more will be able to learn from you.

When Julia Reichstein, Media and Events Officer for the Mentone Public Library invited me to speak at a special forum with other breast cancer survivors about how writing can help put trauma into perspective and be a good coping tool, I accepted.

If sharing my journey and knowledge helped even one other person, the anxiety and stress I knew I’d feel about speaking in public would be worth it. (Yes, I’m still highly strung!)

The day entitled Writing Through Adversity was a great success and I’ll post my notes at a later date, but today I’ll close with a poem I wrote about the day they diagnosed me, and an encounter I had with a neighbour.

We all cope differently with what life throws at us, but usually, friends and family are happy to support us. However, there are various organisations who will also support you, with Lifeline being one of the best.

Too Close For Comfort

He stumbles at the mailbox
our pallid complexions
a mirror match
our anguish palpable.

Pam is dead, he whispers.
we stand together
in damp wintry silence
legs atremble, minds numb.

He confides that diagnosed
with breast cancer
his wife stood in front of
a train last night…

I cannot speak and clutch
my BreastScreen results
A coiled snake
To cope with later…

We stand apart
in damp wintry silence
an express rattles past
bellowing a lament.

© 2014

Teaching an old dog new tricks!

I set up a blog four years ago, determined to not only learn, but actively participate in the digital revolution changing so many aspects of everyday life. As a writer I was aware that ebooks were increasing in popularity while publishers of printed books and bricks and mortar bookshops, dwindled. An online presence deemed a necessity because even traditional publishers expected authors to promote and market books as well as write them. To paraphrase the words of Bob Dylan, one of my favourite singers, the times were definitely changing.

And four years ago my life certainly changed – one of the reasons why the new blog remained with one entry. My enthusiasm for the blog tied up with being halfway through a master’s degree in creative writing, which of course encouraged writers to be relevant in today’s world and get online. However, diagnosed with breast cancer in October 2010, I faced rearranging priorities. I completed my degree with the study helping me to focus on the future as well as being a distraction from hospitals, doctors and chemotherapy, but I lost the confidence and the will to create an online presence. Perhaps ‘chemo brain’ kicked in – fatigue definitely did!

However, the desire to remain relevant as a writer and a teacher of writing has made me try again. I must thank Liz from Healthy Voices for giving me the confidence and that all-important push to do so. The eight week workshop I attended recently at Bayside Medicare Local encouraged ‘harnessing the power of words for positive change’ and was such a comprehensive course on social media and various alternatives for participating online, any feeble excuses I had disappeared.

I want to share my writing plus helpful tips and information I’ve gleaned from years of teaching creative writing, but I also want to write about social justice and equity, the places I’ve travelled to, as well as my journey with breast cancer, the books and articles I’ve read and any other topic that inspires me.  The internet is a great medium for communicating, sharing knowledge and staying in touch – and maintaining a blog will ensure I write regularly, the most important habit for a writer to cultivate.

I coordinate a local community writing group, Mordialloc Writers’ Group and as well as meeting fortnightly to workshop, we host Readings by The Bay on the last Sunday of the month whereby writers can read their work to an appreciative audience. Last Sunday was the last Readings for 2014 and we made it a fundraiser for Medecins Sans Frontiers Australia to go towards their work with victims of Ebola. I explained this frightening health crisis by reading an acrostic poem I had written to present the facts in a more memorable way. We raised $150.00.

Ebola is a river that became a virus, hemorrhagic fever, fatal illness – now uncontrolled fear infects night-time stillness because bacteria flows with ease like a breeze around the globe, contamination transferred with the touch of a robe.

Blood oozes internally and from gums and bowels. The fever fatigue, muscle pain, headache, sore throat, diarrhoea, rashes, kidney and liver death has patients writhing in pain –– a continent howls.

Outbreaks in Africa since 1976 have killed thousands in the Congo, Sudan, Gabon, Uganda, now Guinea, Sierra Leone, Liberia, Nigeria and Senegal –– just names in countries remote to most, but if the world takes responsibility we could make this virus a ghost.

Laboratories, hospitals, doctors, rehydration treatment, immunological and drug therapies neutralise and a cure we might see, but community engagement, expensive medical intervention, safe burials and social mobilisation the key.

African leaders plead for world help as their people die. 7000 lives already lost this year as this river of death bursts its banks to spread while nations capable of helping appear immobile with dread.

Vaccines in the experimental stage offer some hope to countries struggling to cope, with a virus flooding the city, drowning crowded urban communities –– showing no pity.

Infection of healthcare workers feeds international fear, confirming when vigilance lapses the virulence of this virus is clear.

Reducing the risk of human transmission means protective clothing and rigorous hygiene, in poor countries where clean water and sanitation is rarely seen. Transmission from wildlife means no contact with infected fruit bats, antelope, porcupine, monkeys, apes or chimpanzees and all meat must be cooked – advice not implemented with ease.

Under maximum biological containment conditions this virus is not a deadly threat, but in so many infected countries necessary practices can’t be met.
Semen and breast milk will contain the virus for 7 weeks after recovery from this illness ––
no wonder fear disrupts night time stillness.
© 2014