Impermanence, Inevitability and Dying with Dignity.

footsteps in sand

I haven’t posted since July 2020, but it is a new year and notwithstanding the recent outbreak of COVID19 in my local area, I am hoping 2021 will be better.

This is actually a reworking of a post from several years ago and if you read to the end, my choice of updating and reposting should make sense. (It’s not just laziness although it is an effort to overcome a lack of enthusiasm and feeling of irrelevance!)

The last six months have been the definition of hell for so many people despite some (including me) attempting to find the glass half full.

I’ve read of achievements, new hobbies, friendships, educational courses, diets and exercise regimes, technology,  books, films, music, imaginative recipes and discovery of  local environmental gems… there were also plenty of negative impacts from panic and fear, lockdowns, isolation, shortage of goods and services, lost jobs and homes, broken relationships and health issues.

The Virus not the Only Health Crisis

For me, health issues loomed large – my last post ended with the news of a stage 4 invasive melanoma diagnosed.  This shock of a recurrence of skin cancer (I had basil cell carcinomas removed when 30 years old) added to the news of breast cancer returning in December 2019, albeit a different and rarer, breast cancer.

A relieved thought (or unvoiced fear) was how lucky can one person be!

It wasn’t the immediate end of the world but I would be lying if I said thoughts of death didn’t loom large. I checked finances and discussed plans with my daughters for  ‘no funeral, just a big party’;  ensured my will, plus medical and financial power of attorney up-to-date.

In the last decade, many health scares, so déjà vu for the Neil household at this regular event!

yearly mammogram

However, the discovery of a brain tumour and the fear it was metastatic cancer shocked the GP who has cared for me for over 25 years. We both fought back tears, our trembling lips hidden by masks, social distancing forgotten as she squeezed my arm in sympathy and murmured about unfairness and not to lose hope because it could be a meningioma.

I’m 67 years old, ironically, the same age as my husband when he died in 2002, (John was 18 years older than me). Whether it is the Highland genes or just my Mother’s Irish superstition, this coincidence played on my mind and also worried my daughters.

Survival rates for cancer vary from person to person but the milestones of 5 and 10 years are always at the back of a patient’s mind when diagnosed. The longer you can go without a recurrence is something to celebrate.

However, survival rates for a tumour in the brain, poor and if an operation required the risk of stroke high.

I was disappointed when breast cancer returned after 9 years but my breast cancer surgeon inspires confidence and he acted quickly and decisively and this time it was a lumpectomy rather than mastectomy.

I don’t put off mammagrams no matter how uncomfortable they are and I follow his advice, even if data suggests most breast cancer is not picked up by mammagrams.

Plus, the shock of another breast cancer diagnosis soon eclipsed by COVID19 anxiety and declaration of the global pandemic.

The recovery from the melanoma and skin graft during severe lockdown, and in the middle of winter, took a little longer with travel permissions to worry about and more stringent rules for clinicians and patients. These restrictions lasted well into the next health surprise.

By the time I went through all the tests and consultations for the brain tumour, it took a lot of energy to even pretend to be positive about the future.  I thought back to the deaths of family and friends I’d witnessed or been involved with in the last stages of their life – hence revisiting this post about my friend Margaret.

Will I be calm and accepting? Do I want to prolong the inevitable? What are my priorities and is there any point in a bucket list?

I almost forgot to breathe when the neurologist decided it was a meningioma and not metastatic cancer. In the words of my breast surgeon on my annual visit in December, ‘You dodged another bullet, Mairi!’

How long I can keep dodging is a mystery but I’ve decided to turn the page on 2020 and try ‘business as usual’ along with my mantra ‘this too will pass’.

Digital Distraction

I spent July to December posting photographs and haiku on Instagram after joining at the suggestion of a dear friend in Japan who posts about Bonsai.

Naoko was a writing student of mine at Mordialloc Neighbourhood House, when she lived in Australia. She said I was an inspiration to her during a difficult time in her life and even wrote a poem about writing class which I published.

We have stayed connected and she returned any perceived favour by inspiring me to learn a new digital platform (with daughter Mary Jane’s help), indulge my love of photography and the environment, and write haiku, a favourite poetry form!

Naoko’s Instagram is #bonsai_sana and mine is #mairineil

Walking the dog each day around Mordialloc, I focused on everyday sights, let my imagination and thoughts wander and in the evening, inspired and guided by the demands of the form, I wrote haiku.

The anxiety, fear and dark thoughts about health and death receded as once again my passion for writing became therapeutic and a distraction. It gave me a focus and a project.

beautiful sunset creek

Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure — these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.

Steve Jobs

pathways

And for many, death comes too soon…

Farewell To A Friend

The telephone call came out of left field. Tragic news to wreck quality time with a dear friend, yet it  is also a dear friend on the other end of the mobile.  My eyes sting with welling tears, but remain focussed out of the window of the Malt cafe in Beaumaris.

I watch two young mums chat animatedly on the footpath. Relaxed and smiling they are probably enjoying the freedom of the first day of the school year; the little darlings who kept them busy all the summer holidays tucked into classrooms. Another couple on an outside table feed their Golden Retriever tidbits from their plates.

I’m surrounded by chatter; the cafe almost filled to capacity. The aroma of  fresh muffins, fruit toast, and homemade jam mingles with my skinny latte and Lesley’s extra strong cappuccino. However, normality dissipates as I absorb the details of the call.  Body trembling, I feel as if I’ve been punched in the stomach and as usual Tamoxifen blesses me with a hot flush as anxiety peaks and emotions rage.

The day takes its first lurch into the surreal.

I’m on my way to celebrate a friend’s retirement from decades of teaching. She’s treating several friends to lunch at Sierra Tango, Cheltenham instead of us paying and hosting the celebration for her! The generosity of the invitation indicative of her warm, supportive personality and the venue a tribute to her knowledge of gastronomy, appreciation of fine foods and wine, and a commitment to support local businesses.

Determined not to spoil Lisa’s day, I seal my tragic news into an emotional compartment to be dealt with later…

I remember a poster I had on my wall at Burgmann College in 1971, when I lived on campus at ANU; my first year away from home. A poster long since eaten by silver fish when it was consigned to the garden shed, but here’s graphics with the same message – a sightly more colourful way of describing “left field”:

il_570xN.594810779_2dtb

The telephone call from Canberra, from a friend from those university days. She can’t keep shock and horror from her shaky voice.  A mutual friend, someone I shared a flat with in the 70s, is dying. She  was the first non-family member I lived, worked, and studied with – we even shared the double bed that came with the one-bedroom apartment – and thought nothing of it!  She’s now on borrowed time.

How could this be?

A voice laced with tears explains that a late discovery of inoperable breast cancer, treated with letrozole, has metastasised to the groin and brain stem. The condition kept secret for two years, while Margaret spent time travelling overseas and going through her bucket list. Now, in palliative care, her lifespan numbered in weeks rather than months – or days, if she experiences a seizure or rapid deterioration of the brain.

A  picture of all of us at the Harmonie German Club in Canberra in 1973, was shared in a recent post.  Tall slim Margaret centre stage.

Mum's_Picture_of_Margaret_&_Jane

She can’t be dying – and not of breast cancer. This news, too confronting and scary. I think back to the apartment we shared, and shiver. That old house divided into three and this news means all of the women living there, including me, have breast cancer: one double mastectomy, two single mastectomies and now Margaret with metastatic breast cancer! Bad luck? Coincidence? A cancer cluster?

A problem for another day…

Bad News Travels Fast

During Lisa’s celebration lunch I receive another phone call with news that a European friend who had stayed with me early January had to have an emergency eye operation in Sydney because of a detached retina. There’s a danger she’ll lose her sight.

This super fit friend, a world-renowned marathon swimmer, came ninth in the Pier to Pub swim at Lorne this year. She’s supposed to be leaving Sydney for her home in Italy with a stop in one of Thailand’s resorts, but is now delayed in Australia until doctors allow her to fly.

The day has taken its second lurch into the surreal.

On my way home, I have the Serenity Prayer playing in my head as I try to put the sad news into perspective and decide on a course of action.

images

The next day I’m in Canberra and over four days catch up with many old friends from university, make some new ones, and spend hours with Margaret as she adjusts to the effects of radiotherapy and the news of having limited time.

She copes well with the steady stream of people who want to help in some way, as well as saying goodbye. The adage ‘bad news travels fast‘ proving true.

The busyness reminds me of husband, John’s last days – the irony of our busy vibrant house,  constant comings and goings, laughter and noise, feasts, and endless cups of tea and coffee surrounding someone dying.

We share meals with Margaret, laughs and stories. I spot photographs in an album – and snap copies with my camera.

 ‘Those indeed were the days my friend,’ I say,  ‘we had a lot of fun!’

Margaret agrees. I listen as she describes the highlights of her overseas trips and of her intention to travel again.

Deep down we both know another trip will never happen.

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Before I leave, I water the plants and pick flowers to brighten inside.   Margaret manages to negotiate back steps with some help and watches me water the garden, pointing out several special plants that came from other people’s gardens, or were received as gifts.

‘This can’t be happening,’ she whispers and I know she isn’t talking about my watering efforts. She alludes to her parents’ longevity, father ‘Digger’, dying a few years ago aged 93, her mother living into her 80s.

Her head shakes slightly, ‘I thought I had 23 years before I had to worry about all these decisions … what to do with things … ‘ Her voice trails off as her eyes drink in the beauty of flowers flourishing from the effect of an unusually cool Canberra summer providing higher than average rainfall.

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I help her back inside wondering if this will be the last time I will feel the weight of her arm. The last time I brush fallen hair from her shoulders as her scalp reacts to the radiotherapy.

Why is the sun still shining? The magpies trilling? Laughter drifting from nearby apartments…

I recall a speech from one of the many Aboriginal women in our friendship circle. She thanked Margaret for all the books she bought her children over the years, the encouragement to access education. ‘One son got his PhD last year, all my girls have tertiary qualifications – thank you from the bottom of my heart.’

Others repeat similar sentiments. ‘You may not have any children of your own, but what you have done for our children means they are yours too!’

The seeds we sow. A wonderful legacy indeed, but I wish Margaret had another 23 years to sort out her life…

I wanted the last few days with her to be surreal and someone to wake me up and say it was all a dream. But of course I faced the reality of saying goodbye and dealing with my grief.

Now, with the reality of declining health I’ll hopefully adjust with similar dignity as Margaret when the inevitable must be faced – with luck still in the distance.

Then again, 2021 may hold bigger surprises than 2020 and they could be good!

That (wo)man is successful who has lived well, laughed often, and loved much, who has gained the respect of the intelligent men (and women) and the love of children; who has filled his(her) niche and accomplished his (her) task; who leaves the world better than he (she) found it, whether by an improved poppy, a perfect poem, or a rescued soul; who never lacked appreciation of earth’s beauty or failed to express it; who looked for the best in others and gave the best he(she) had.

Robert Louis Stevenson

 

Imagine a future when breast cancer is treated with antibiotics!

overcoming cancer sign

On Thursday evening, I heard this amazing thought voiced when I attended a FREE public lecture, exploring the history, current practice and future of breast cancer treatment hosted jointly by the Victorian Comprehensive Cancer Care Centre (VCCC) and Breast Cancer Network Australia (BCNA).

Held at Peter MacCallum Cancer Centre (VCCC), the CEO of BCNA, Kirsten Pilatti, introduced Dr Eric Winer, the keynote speaker and one of the world’s foremost and highly regarded breast cancer specialists from the Dana-Faber Cancer Institute in the United States.

It is not the first time Dr Winer has visited Australia to share the knowledge he’s gained from clinical trials he has designed and conducted, the results of which paved the way toward the more personalised treatment of breast cancer patients and move away from the ‘one-size fit all’ approach of previous years.

Kirsten praised Dr Winer’s commitment to ‘treating the patient not the disease’, an approach shaped by his own cancer journey, which enabled him to draw on empathy as well as expertise.

Improving Breast Cancer Outcomes: Past, Present and Future

When Dr Winer, diminutive, grey hair and glasses took over the podium, he apologised if he fell asleep or stumbled during his presentation because he had only arrived in Melbourne that morning after a long flight from Boston.

However, his well-researched presentation delivered efficiently and with aplomb, showed no sign of fatigue and he held the audience spellbound.

cancer centre 1
Peter MacCallum Cancer Centre

The Past – 1990

1990 was the beginning of Dr Winer’s career concentrating solely on breast cancer, or as he explained ‘that year was the last time I treated a patient without breast cancer.’

His reflections and observations:

  • in the USA there were 150,000 cases recorded and 44,300 deaths

  • it was a monolithic disease – doctors could only determine the stages, not the type

  • most cases presented as a lump or mass

  • treatment was extensive and debilitating surgery

  • psychological and physical distress for the patient

  • chemotherapy and other adjuvant treatments, not an option

  • women were scared, uninformed and felt victims – some felt shameful

  • breast cancer advocacy was in its infancy and sadly, even today, some women still feel or are made to feel ashamed

  • lymphedema was common whereas although it can be a problem today it is not as severe as in the past

  • metastatic treatment was limited, toxic, barbaric and ineffective

  • hormonal therapy limited and it too barbaric compared to nowadays

  • there was poor pain control and patients spent lots of time in hospital

  • breast implants and reconstruction experimental

  • wards were run like ‘concentration camps’

 

peter mac history timeline

TODAY

Today it is totally different.

  • there’s a recognition that one woman’s breast cancer not the same as another
  • a better understanding of biologics heterogeneity (2001 study – genetic differences across tumour types)
  • a better understanding of cancer biology and differences within subtypes
  • a growing appreciation of the tumour micromanagement
  • massive drug development – many new ones on the market with real improvement and better outcomes
  • a better understanding of hormone receptive tumours, they grow slowly and survival rate is high if therapy used

Studies divided tumours into high grade and low grade, and negative and positive to various hormones 

Clinical trials and researchers looked at:

the microenvironment, macroenvironment (the host), diet and exercise

In the last 30 Years

  • Less extensive surgery and more breast preservation
  • Far fewer lymph node dissections
  • Use of several adjuvant therapies to decrease surgery
  • Reduction in early and late toxicity using modern techniques
  • More convenient fractionation schedules
  • Improvements in reconstruction
  • Individualised therapy based on patient preferences
  • Radiation more accurate with better protection of the heart and lungs
  • ⅔ of women eligible to have lumpectomies choose this in the USA
  • Small number choose bilateral mastectomies
  • Advances in chemotherapy and supportive care
  • Widespread use of drugs for cancer deemed hormone therapy receptive with a substantial decline in mortality

The magnitude of late (6-20years) recurrence after an initial diagnosis of ER+ breast cancer disease has shown the value of extended hormone therapy but he is aware of the side effects of this therapy.

Adjuvant treatment is additional therapy after primary surgery to kill or inhibit micro-metastases. Primary surgery for breast cancer is accomplished by lumpectomy followed by whole-breast irradiation or by mastectomy.

In patients at increased risk, chemo, immune or hormonal therapy, kills hidden cancer cells – adjuvant therapy has proven effective in various cancers especially if lymph nodes are involved.

TAILORX Trial

He designed this USA study of 2006-2010.

It was one of the first large scale trials to examine a methodology for personalising cancer treatment.

“Any woman with early-stage breast cancer age 75 or younger should have the 21-gene expression test and discuss the results with her doctor to guide her decision to the right therapy.”

Dr Sparano MD, associate director for clinical research, Albert Einstein Cancer centre New York

The role of chemotherapy for some tumours is still unclear but the data “… confirm that using a 21-gene expression test to assess the risk of cancer recurrence can spare women unnecessary treatment if the test indicates that chemotherapy is not likely to provide benefit.”

The findings of the trial significant:

Most women with early breast cancer do not benefit from chemotherapy – that is 70% of women with the most common type of breast cancer

Women with hormone receptor (HR) – positive, HER2-negative, axillary lymph node-negative breast cancer, the discovery that treatment with chemotherapy and hormone therapy after surgery is not more beneficial than treatment with hormone therapy alone.

There is now greater attention to the quality of life and symptom management of those diagnosed with breast cancer.

  • There are a plethora of anti-HER2 drugs, these new drugs combat the adverse drug reaction patients experience
  • Targeted approaches that augment hormonal agents – an array of hormonal and chemotherapy approaches
  • Advances in radiotherapy

Immunotherapy Trials for triple-negative breast cancer

  • Immunotherapy is more used for the treatment of melanoma and lung cancers
  • It may be useful for metastatic breast cancer

Mortality rates from breast cancer have dropped 38% in the USA

During the trial, the combination of adjuvant therapy and screening compared and the findings show screening is important but can lead to overdiagnosis and overtreatment.

Some cancers may never bother you in life but are picked up by screening

USA Figures

  • 276,480 cases of invasive disease
  • 48,539 new cases of DCIS (ductal carcinoma in situ – the earliest form of breast cancer which is non-invasive)
  • 50,000 deaths

Important findings

  • Therapeutic resistance exists – this a major cause of death in developing countries where there is limited access to screening and drugs
  • Brain metastasis is a major problem for 50% of patients with HER2+
  • Need for better treatment for some cancers and reduction of chemotherapy
  • Overtreatment is an issue – causes substantial morbidity, not death

sign about cancer centre

HEALTH EQUITY

For anyone following USA politics, health equity is a big issue. Dr Winer let it be known he couldn’t imagine anyone in the room liking or supporting President Trump, or his acceptance of the current health inequalities in the USA where there is inadequate and unequal access to healthcare

Dr Winer certainly didn’t support Trump, he was ‘from Boston and no one supports Trump there!’

Health equity is a fundamental social problem and screams discrimination.

Race, poverty, limited education, lack of health insurance and health literacy all contribute to inequity.

Whether it is because of poverty, race, ethnicity, sexual orientation or being considered overweight – statistics show if you are a 30-year-old lesbian or a woman over 80, if diagnosed there is a high risk of dying from breast cancer!

Racial disparity in breast cancer persists with people of colour suffering higher rates of death.

In her introduction, Kirsten mentioned the problem in Australia regarding Aboriginal women’s access to health services. In the USA, Dr Winer said it is the African-American population who suffer, and ironically the worst equity is in Washington!

Less than optimal care can cause death from almost anything that makes a person have less access to healthcare available.

Health inequity may cause up to 30% unnecessary deaths

Regarding clinical trials – there is a low participation rate and Dr Winer wants more engagement with clinicians and better communication so there is meaningful interaction between patients and clinicians about the importance of clinical trials.

Aboriginal and Torres Strait Island Possum Skin Cloak – Peter MacCallum Centre acknowledges and pays respect to the Wurundjeri People, the traditional owners of the land on which the hospital stands.

Possum skin cloaks are one of the many expressions of traditional south-eastern Aboriginal and Torres Strait Islander peoples. Cloaks aid healing and wellbeing by connecting Aboriginal and Torres Strait Islander people to their culture and identity and spiritual healing.

We thank the Aboriginal and Torres Strait Islander Women Survivors of Breast Cancer and other cancers that created this beautiful healing cloak, intended for use by Aboriginal and Torres Strait Islander people and their families while at Peter Mac.

In creating this healing cloak, we acknowledge the Peter Mac Foundation and our partnership with Breast Cancer Network Australia.

DRUG COST 2017

These are the amounts drug companies estimate it costs for production of various drugs used in breast cancer treatment (a year’s supply):

  • $20,000
  • $132,000
  • $120,000
  • $102,000
  • $118,000
  • $76,000
  • Dr Winer said the drug development costs 2-5 times more in the USA than anywhere else, therefore the profit margin is not reasonable.
  • The government prohibits negotiating around the cost of drugs, Dr Winer believes there should be control and regulation for the sake of health equity.

Dr Winer looked at the future and made some predictions:

Next 10 Years

  • More detailed understanding of the disease
  • Real improvements in survival and quality of life
  • Less surgery,
  • Advances and better-targeted radiation
  • Decline in deaths
  • Increase in those considered “cured”
  • Health equity may improve in the next decade
  • 25-40% reduction in deaths
  • No movement in prevention

Next 25-30 Years

  • We’ll be treating breast cancer with antibiotics
  • Death will be rare – a 50-80% reduction
  • Prevention treatment may be possible

Questions from the audience

 

  1. A man in the audience suggested dragon boat racing, which many women take up after surgery, is effective in reducing the risk of recurrence because it is good exercise and helps with weight loss and improved strength. He had attended another talk where a doctor had said that 10,000 breast screens only saved one life and wanted to know if that statistic was true.

Answer: Dr Winer said that breast screening was a less useful tool than people assumed. People have to consider their general health and quality of life and detect cancer early and choose the best treatment available.

Screening mammograms can often find invasive breast cancer and DCIS that need to be treated, but possibly some of those cancers would never grow or spread.

Dr Winer is aware that many of the hormonal therapies have horrible side effects and more work needs to be done in deciding who will benefit from it and in reducing side effects.

  1. How Do You Prevent Breast Cancer?

Dr Winer admitted his reply was the ‘impossible dream’ and with a slightly facetious smile rattled off the following:

  • Have first child before the age of 18
  • Avoid weight gain if post-menopausal
  • Avoid excessive alcohol intake
  • If the disease is in your family have regular check-ups
  • Take Tamoxifen (however, this has side effects some people find distressing!)

PERSPECTIVE

The forum was on the 7th floor of the cancer centre – an amazing view of the city you don’t often see.

I chatted with two women while waiting for the forum to start.

One had a mastectomy plus lymph bodes removed 28 years ago. She was on a trial and her chemotherapy resulted in many weeks in the hospital. Cancer, returned 11 years later but it is now 17 years since the recurrence. The other survivor had a bilateral mastectomy 27 years ago. Now in her 80s, she has decided to resign from the committee of the VCCC. She fundraised and campaigned to have the centre established.

As Dr Winer said, clinical trials and learning from the vast amount of data over the years is very important. Both these women have given so much to help clinicians understand and treat breast cancer and improve survival rates.

We all stand on the shoulders of those who have gone before.

Just as I saw the city in a different light that evening, I also saw the effectiveness of breast screening in a different light. Apparently, only 30% of breast cancers are picked up by screening and unless interpreted correctly can lead to unnecessary interference, overtreatment and a lot of angst.

Both my cancers were first detected by a routine mammogram – how lucky was I?

I left the VCCC more enlightened but with plenty to mull over on the train trip home while acknowledging my privilege.

The Peter MacCallum Centre is world-class, and the treatment I have had for breast cancer (both times) at Cabrini has been excellent and Peter Gregory, my breast surgeon, is a caring specialist who communicates well with his patients.

A big thank you to Melbourne University and the Breast Cancer Network – both organisations promoted the forum to me.

Walking down Elizabeth Street to Melbourne Central I counted my blessings, enjoying the balmy evening in our very livable city!

It is good to know my daughters and others in the future will benefit from the dedicated clinicians and researchers working towards that amazing goal of an antibiotic for breast cancer!

 

 

 

Impermanence, Inevitability and Dying with Dignity.

footsteps in sand

I haven’t posted since July 2020, but it is a new year and notwithstanding the recent outbreak of COVID19 in my local area, I am hoping 2021 will be better.

This is actually a reworking of a post from several years ago and if you read to the end, my choice of updating and reposting should make sense. (It’s not just laziness although it is an effort to overcome a lack of enthusiasm and feeling of irrelevance!)

The last six months have been the definition of hell for so many people despite some (including me) attempting to find the glass half full.

I’ve read of achievements, new hobbies, friendships, educational courses, diets and exercise regimes, technology,  books, films, music, imaginative recipes and discovery of  local environmental gems… there were also plenty of negative impacts from panic and fear, lockdowns, isolation, shortage of goods and services, lost jobs and homes, broken relationships and health issues.

The Virus not the Only Health Crisis

For me, health issues loomed large – my last post ended with the news of a stage 4 invasive melanoma diagnosed.  This shock of a recurrence of skin cancer (I had basil cell carcinomas removed when 30 years old) added to the news of breast cancer returning in December 2019, albeit a different and rarer, breast cancer.

A relieved thought (or unvoiced fear) was how lucky can one person be!

It wasn’t the immediate end of the world but I would be lying if I said thoughts of death didn’t loom large. I checked finances and discussed plans with my daughters for  ‘no funeral, just a big party’;  ensured my will, plus medical and financial power of attorney up-to-date.

In the last decade, many health scares, so déjà vu for the Neil household at this regular event!

yearly mammogram

However, the discovery of a brain tumour and the fear it was metastatic cancer shocked the GP who has cared for me for over 25 years. We both fought back tears, our trembling lips hidden by masks, social distancing forgotten as she squeezed my arm in sympathy and murmured about unfairness and not to lose hope because it could be a meningioma.

I’m 67 years old, ironically, the same age as my husband when he died in 2002, (John was 18 years older than me). Whether it is the Highland genes or just my Mother’s Irish superstition, this coincidence played on my mind and also worried my daughters.

Survival rates for cancer vary from person to person but the milestones of 5 and 10 years are always at the back of a patient’s mind when diagnosed. The longer you can go without a recurrence is something to celebrate.

However, survival rates for a tumour in the brain, poor and if an operation required the risk of stroke high.

I was disappointed when breast cancer returned after 9 years but my breast cancer surgeon inspires confidence and he acted quickly and decisively and this time it was a lumpectomy rather than mastectomy.

I don’t put off mammagrams no matter how uncomfortable they are and I follow his advice, even if data suggests most breast cancer is not picked up by mammagrams.

Plus, the shock of another breast cancer diagnosis soon eclipsed by COVID19 anxiety and declaration of the global pandemic.

The recovery from the melanoma and skin graft during severe lockdown, and in the middle of winter, took a little longer with travel permissions to worry about and more stringent rules for clinicians and patients. These restrictions lasted well into the next health surprise.

By the time I went through all the tests and consultations for the brain tumour, it took a lot of energy to even pretend to be positive about the future.  I thought back to the deaths of family and friends I’d witnessed or been involved with in the last stages of their life – hence revisiting this post about my friend Margaret.

Will I be calm and accepting? Do I want to prolong the inevitable? What are my priorities and is there any point in a bucket list?

I almost forgot to breathe when the neurologist decided it was a meningioma and not metastatic cancer. In the words of my breast surgeon on my annual visit in December, ‘You dodged another bullet, Mairi!’

How long I can keep dodging is a mystery but I’ve decided to turn the page on 2020 and try ‘business as usual’ along with my mantra ‘this too will pass’.

Digital Distraction

I spent July to December posting photographs and haiku on Instagram after joining at the suggestion of a dear friend in Japan who posts about Bonsai.

Naoko was a writing student of mine at Mordialloc Neighbourhood House, when she lived in Australia. She said I was an inspiration to her during a difficult time in her life and even wrote a poem about writing class which I published.

We have stayed connected and she returned any perceived favour by inspiring me to learn a new digital platform (with daughter Mary Jane’s help), indulge my love of photography and the environment, and write haiku, a favourite poetry form!

Naoko’s Instagram is #bonsai_sana and mine is #mairineil

Walking the dog each day around Mordialloc, I focused on everyday sights, let my imagination and thoughts wander and in the evening, inspired and guided by the demands of the form, I wrote haiku.

The anxiety, fear and dark thoughts about health and death receded as once again my passion for writing became therapeutic and a distraction. It gave me a focus and a project.

beautiful sunset creek

Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure — these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.

Steve Jobs

pathways

And for many, death comes too soon…

Farewell To A Friend

The telephone call came out of left field. Tragic news to wreck quality time with a dear friend, yet it  is also a dear friend on the other end of the mobile.  My eyes sting with welling tears, but remain focussed out of the window of the Malt cafe in Beaumaris.

I watch two young mums chat animatedly on the footpath. Relaxed and smiling they are probably enjoying the freedom of the first day of the school year; the little darlings who kept them busy all the summer holidays tucked into classrooms. Another couple on an outside table feed their Golden Retriever tidbits from their plates.

I’m surrounded by chatter; the cafe almost filled to capacity. The aroma of  fresh muffins, fruit toast, and homemade jam mingles with my skinny latte and Lesley’s extra strong cappuccino. However, normality dissipates as I absorb the details of the call.  Body trembling, I feel as if I’ve been punched in the stomach and as usual Tamoxifen blesses me with a hot flush as anxiety peaks and emotions rage.

The day takes its first lurch into the surreal.

I’m on my way to celebrate a friend’s retirement from decades of teaching. She’s treating several friends to lunch at Sierra Tango, Cheltenham instead of us paying and hosting the celebration for her! The generosity of the invitation indicative of her warm, supportive personality and the venue a tribute to her knowledge of gastronomy, appreciation of fine foods and wine, and a commitment to support local businesses.

Determined not to spoil Lisa’s day, I seal my tragic news into an emotional compartment to be dealt with later…

I remember a poster I had on my wall at Burgmann College in 1971, when I lived on campus at ANU; my first year away from home. A poster long since eaten by silver fish when it was consigned to the garden shed, but here’s graphics with the same message – a sightly more colourful way of describing “left field”:

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The telephone call from Canberra, from a friend from those university days. She can’t keep shock and horror from her shaky voice.  A mutual friend, someone I shared a flat with in the 70s, is dying. She  was the first non-family member I lived, worked, and studied with – we even shared the double bed that came with the one-bedroom apartment – and thought nothing of it!  She’s now on borrowed time.

How could this be?

A voice laced with tears explains that a late discovery of inoperable breast cancer, treated with letrozole, has metastasised to the groin and brain stem. The condition kept secret for two years, while Margaret spent time travelling overseas and going through her bucket list. Now, in palliative care, her lifespan numbered in weeks rather than months – or days, if she experiences a seizure or rapid deterioration of the brain.

A  picture of all of us at the Harmonie German Club in Canberra in 1973, was shared in a recent post.  Tall slim Margaret centre stage.

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She can’t be dying – and not of breast cancer. This news, too confronting and scary. I think back to the apartment we shared, and shiver. That old house divided into three and this news means all of the women living there, including me, have breast cancer: one double mastectomy, two single mastectomies and now Margaret with metastatic breast cancer! Bad luck? Coincidence? A cancer cluster?

A problem for another day…

Bad News Travels Fast

During Lisa’s celebration lunch I receive another phone call with news that a European friend who had stayed with me early January had to have an emergency eye operation in Sydney because of a detached retina. There’s a danger she’ll lose her sight.

This super fit friend, a world-renowned marathon swimmer, came ninth in the Pier to Pub swim at Lorne this year. She’s supposed to be leaving Sydney for her home in Italy with a stop in one of Thailand’s resorts, but is now delayed in Australia until doctors allow her to fly.

The day has taken its second lurch into the surreal.

On my way home, I have the Serenity Prayer playing in my head as I try to put the sad news into perspective and decide on a course of action.

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The next day I’m in Canberra and over four days catch up with many old friends from university, make some new ones, and spend hours with Margaret as she adjusts to the effects of radiotherapy and the news of having limited time.

She copes well with the steady stream of people who want to help in some way, as well as saying goodbye. The adage ‘bad news travels fast‘ proving true.

The busyness reminds me of husband, John’s last days – the irony of our busy vibrant house,  constant comings and goings, laughter and noise, feasts, and endless cups of tea and coffee surrounding someone dying.

We share meals with Margaret, laughs and stories. I spot photographs in an album – and snap copies with my camera.

 ‘Those indeed were the days my friend,’ I say,  ‘we had a lot of fun!’

Margaret agrees. I listen as she describes the highlights of her overseas trips and of her intention to travel again.

Deep down we both know another trip will never happen.

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Before I leave, I water the plants and pick flowers to brighten inside.   Margaret manages to negotiate back steps with some help and watches me water the garden, pointing out several special plants that came from other people’s gardens, or were received as gifts.

‘This can’t be happening,’ she whispers and I know she isn’t talking about my watering efforts. She alludes to her parents’ longevity, father ‘Digger’, dying a few years ago aged 93, her mother living into her 80s.

Her head shakes slightly, ‘I thought I had 23 years before I had to worry about all these decisions … what to do with things … ‘ Her voice trails off as her eyes drink in the beauty of flowers flourishing from the effect of an unusually cool Canberra summer providing higher than average rainfall.

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I help her back inside wondering if this will be the last time I will feel the weight of her arm. The last time I brush fallen hair from her shoulders as her scalp reacts to the radiotherapy.

Why is the sun still shining? The magpies trilling? Laughter drifting from nearby apartments…

I recall a speech from one of the many Aboriginal women in our friendship circle. She thanked Margaret for all the books she bought her children over the years, the encouragement to access education. ‘One son got his PhD last year, all my girls have tertiary qualifications – thank you from the bottom of my heart.’

Others repeat similar sentiments. ‘You may not have any children of your own, but what you have done for our children means they are yours too!’

The seeds we sow. A wonderful legacy indeed, but I wish Margaret had another 23 years to sort out her life…

I wanted the last few days with her to be surreal and someone to wake me up and say it was all a dream. But of course I faced the reality of saying goodbye and dealing with my grief.

Now, with the reality of declining health I’ll hopefully adjust with similar dignity as Margaret when the inevitable must be faced – with luck still in the distance.

Then again, 2021 may hold bigger surprises than 2020 and they could be good!

That (wo)man is successful who has lived well, laughed often, and loved much, who has gained the respect of the intelligent men (and women) and the love of children; who has filled his(her) niche and accomplished his (her) task; who leaves the world better than he (she) found it, whether by an improved poppy, a perfect poem, or a rescued soul; who never lacked appreciation of earth’s beauty or failed to express it; who looked for the best in others and gave the best he(she) had.

Robert Louis Stevenson