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!

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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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