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.

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.

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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

 

A Public Health Crisis Requires Personal Responsibility and a Personal Response

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A leaflet freely available on the counter of my local chemist

Many people know me through my writing and teaching, but another hat I have worn for several years is that of a consumer health representative and as we deal with COVID-19, I’ve attended several excellent ZOOM meetings organised by Victoria’s Health Issues Centre (these are recorded and worth watching). 

Various health organisations continue to work towards improving how health is delivered whether the topic is related to COVID-19 or not. I also presented (via an online platform) to a conference at Melbourne University, organised by medical students for their 2020 MD Student Conference (MDSC). (Details below)

I’ve taken surveys for Swinburne University, where I volunteered for research, the Breast Cancer Network, and given feedback to the Cancer Council of Victoria. Sharing my experience with breast cancer and any health information, I discover, is often a motivation for writing.

life stories anthologies

Health Literacy Must Be A Priority

Health literacy is about how people understand information about health and health care, and how they apply that information to their lives. It is about how they use that information to decide on treatment and lifestyle.

Over the years, I have been able to use my writing skills combined with personal experience of the health system to give input and feedback to help health professionals and various institutions and government bodies improve the health information provided.

The Central Bayside Community Health Centrethe Health Issues Centre and the Cancer Council welcome volunteers and are always willing to hear how they can improve health service delivery and patient outcomes.

From the Australian Commission on Safety & Quality in Healthcare:

  • Individual health literacy is the skills, knowledge, motivation and capacity of a person to access, understand, appraise and apply information to make effective decisions about health and health care and take appropriate action.
  • Health literacy environment is the infrastructure, policies, processes, materials, people and relationships that make up the health system and have an impact on the way that people access, understand, appraise and apply health-related information and services.

https://www.safetyandquality.gov.au/our-work/patient-and-consumer-centred-care/health-literacy

Volunteering To be  A Health Advocate May Help Others 

My health advocate journey began in 2009 when I attended a focus group at Central Bayside to help them rewrite leaflets about Diabetes.

My father had been diabetic for many years (mature-age onset) and moved from tablets to insulin before his death. From firsthand observations, I knew there was room for improvement in the brochures publicly available.

At the time, I was enrolled in the Masters of Writing so my writing skill was, and still is,  useful to share.

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A reference letter explaining my early involvement with community health.

Pandemic Restrictions Resume in Victoria

It is worrying that COVID-19 cases have spiked in Victoria causing a Lockdown of several suburbs.

For me, the upsurge is not surprising because when the initial Lockdown was eased mid June many people behaved as if the pandemic was over despite Premier Daniel Andrews saying repeatedly, ‘just because you can doesn’t mean you should’ and the Chief Medical Officer, Professor Brett Sutton reminding us continually, ‘this coronavirus is ten times more infectious than flu.’

Few, if any, of us enjoy forced isolation, but most people DID put the health of others before social considerations and obeyed the rules. Let’s hope we can do it again!

  • The message of the dangers of COVID-19 has made headlines since March – not just here but overseas. Any other topic has great difficulty gaining oxygen. Most people can access the Internet – there is no excuse for being ill-informed.
  • In the beginning, there were mixed messages, especially from the Federal Government, but by April all States had the same mantra about social distancing and washing hands. Debate continues about wearing masks, but many people have made that choice and it helps reinforce social distancing.
  • There is concern not enough effort was used in Victoria to ensure the message was inclusive of multi-cultural communities but frankly considering every country is touched by COVID-19 and we have multi-cultural television and radio stations with many communities having their own language newspapers, I don’t think that can be the only reason. There is also an excellent website with health translations in more than 100 languages. More likely it is the socio-economic make-up of those suburbs with people working the casual and low paid jobs of hospitality, retail and transport that have continued throughout the Lockdown period – plus the pressure on schools throughout Australia to reopen. The virus is highly infectious – it was never about elimination (a vaccine is a long way off and will ever only be 70% effective anyway) but aiming for suppression and control.
  • Debate still rages about schools going back too early and the opening up of businesses and venues but considering the world is coping with an unprecedented crisis this century our various levels of government are doing their best – it was always going to be a balance between health and economic survival. Again – personal behaviour is the key.
  • Sadly, some people CHOOSE to believe the seriousness of the pandemic and ignore regulations.

It is up to individuals to be aware, follow the rules, and take care.

Recording The Pandemic For Future Generations

In April, my friend Matilda Butler who runs the womensmemoirs.com site in the USA with Kendra Bonnett, asked women to write about COVID-19.

I submitted a reflective piece you can read on the site plus poems and stories from other women or read here as a pdf: article for Matilda

Now, with a sense of security rapidly diminishing if we continue to see larger numbers of infections, an update will be needed and it may well have a different tone!

There are writers all over the world recording this pandemic from a variety of perspectives and journalists and bloggers tapping daily. Next year and the years to follow, we’ll see a plethora of films, documentaries, plays, poems, novels and memoir…

When Lockdown began in April, I wrote a series of blogs with ideas for writing – good therapy to cope with isolation but also starting points to write your perspective on current events.

Here is a snapshot of one lot of research and there will be plenty more – only today, I completed a survey from the Breast Cancer Network.

I’m sure every community organisation and government department and local council is collecting data. The City of Kingston is – so have your say and contribute to the pool of knowledge about this time in history.

COVID 19 SURVEY RESPONSE SWINBURNE UNI

A summary of the results of the City of Kingston’s May 2020 survey:

From the 202 responses collected between 13-21 May 2020, they identified the following insights:

  • A lot of people adapted to using technology to remain connected (89% of people)
  • Around half were worried about being infected, but most (97%) had access to facts and information on quarantining
  • 41% were worried that they or their families wouldn’t recover if infected
  • Physical activity was cited as the main activity providing relief
  • The main concern people had about being isolated was the loss of connection with their social support network

You can access the full report and also see regular updates from the website.

special light to record my interview
a special light was sent by courier for my interview

The Use of Technology Has Zoomed During COVID-19

As mentioned before, I have been extra careful since January because of a recent breast cancer operation and so adapted easily to Lockdown, isolation and social distancing.

When the Cancer Council asked me to contribute to the medical student conference at Melbourne University, I accepted because it could be prerecorded. The session recorded in May, but broadcast on June 25th.

The organisers and presenters plus the film crew amazing. It was a positive and fascinating experience. A great learning curve in the use of technology!

Here are screenshots from the session: “Breaking Bad News”.

This session forms part of the Day 4 program theme “The Ultimate Equaliser”. We have chosen this theme to give medical students the opportunity to have in-depth discussions on mortality and the human condition. We are very fortunate to have a number of esteemed healthcare professionals presenting on Day 4. An integral aspect of medical education is learning from patients, as they are often our best teachers. We feel that it is essential to include personal stories in a session on breaking difficult news, so that we can keep patients at the centre of our education.

 

I was one of three women who volunteered to share their stories on the day, and I read two pages from my story published in the book Journey – experiences with breast cancer.

Here is the selection – EXTRACT FOR MELB UNI MD CONFERENCE 2020. They also attached notes I had discussed with Georgia during the various phone calls and emails preparing for the session. NOTES – interview regarding cancer May 26th 2020.

My initial thank you to the organisers:

Thank you to the organisers for the opportunity to share my story. Thank you, too, for those who will listen who are joining the medical profession – as we have seen during this pandemic, the pressure, expectations, danger and sacrifices for frontline workers has revealed how important, precious and valuable you are for a healthy functioning society.

Personally, I’m grateful to medical science for my life. The improvements in breast cancer detection and research plus treatment available in Australia meant my cancer diagnosis in 2010 disrupted my quality of life but was not a death sentence.

And that is what the mention of cancer means to most people – a terminal illness that once you are diagnosed and even go into remission, it is a coiled snake waiting to strike. That metaphor turned out to be true for me because of my breast cancer, albeit another type, returned in December 2019.

In the words of my wonderful breast surgeon, Dr Peter Gregory – ‘nine years Mairi, you almost reached ten!’ His disappointment and disbelief matched mine because of course there are legendary milestones, whether true or not, of 5 years and 10 years – making those free of a recurrence is believed to extend the likelihood the cancer won’t return , or worst spread to other parts of the body.

Both times my cancer was picked up by breast screening and although at a recent event put on at Peter McCallum’s I discovered only a small amount of cancers are picked up by mammograms, I am so grateful to have access to this free program in Australia.

And my thank you after everything went as planned!

Dear Georgia,

To be cliched – the pleasure was all mine:)
Thank you again for giving me a platform for my story and I think you, Tansy and all the others have done an amazing job considering the circumstances in which you have had to operate.
Thank you for always being so courteous and ready to respond and adapt to my needs, even when it probably inconvenienced your own,
All of you can be immensely proud of what you are achieving but more importantly the place from where your efforts and the impetus has come – creating a first class health system that cares for everyone’s needs.
I was most impressed with – I think it was Lily who said it – ‘welcome, this is the way of the future…’ You and your co-workers are all very talented and I can see the benefits for a lot of digital expertise being applied in the future for conferences etc because who knows how long travel or large gatherings will be risky to organise. Also, what you have done over the last few weeks has been amazing in establishing a pathway for all sorts of voices to be included at conferences where usually only certain ones are invited.
I know the title consumer rep has been coined, especially by organisations fighting for equity in the two-tiered system we have (private V public health) and for a multitude of voices to be heard, but I personally never want to move away from the word patient when I am referred to treatment for my health because it implies being in the care of a doctor/medical clinician. Whereas consumer can so easily be applied to someone shopping or dining whose main interest is value for money rather than the esoteric outcomes of quality of life regarding health procedures! 
We are all individuals and our bodies can respond in various ways and so care provided must always be personal and often tailored to suit the individual – not mass consumption – what works or is accepted by one may be inappropriate or not work on another.
A bit like in the 90s when suddenly those receiving education became clients rather than pupils or students. 
Word choice matters because we all come with our own prejudices, perspectives and experiences but it would be nice if we could agree on a terminology that gets the balance and duty of care right – and in some areas of our society there has to be an authoritative balance some times.
I want to be empowered to have a say in the health system but I also want to acknowledge the expertise of the people looking after me and that their advice is coming from a place of knowledge and wanting to heal me and I am happy to accept they know more than me but I hope they are also prepared to listen and set aside some of their assumptions.
Good luck with all your other planning and remember to take some time out for relaxation and fun – you deserve it:)
All the best
Mairi

 

We have a good health system in Victoria and there are people working all the time to make it better.

The health system had to take stock and organise to cope with the pandemic and remain functioning. It could have so easily become overwhelmed like other countries – especially Italy, Brazil and the USA.

In Victoria, the effort to keep everyone informed and to meet everyone’s expectations has been excellent.

The initial postponement of elective surgeries to ensure there were enough hospital beds and equipment if needed has been lifted, but if people don’t heed the warnings who knows what strain will be put on available resources?

The message I received and took on board is ‘don’t forget your health check-ups’ . An important message to act on. 

I went for my regular skin cancer check and they discovered an invasive melanoma. Despite increased testing for COVID-19 the results of the biopsies came back quickly and an operation including skin graft is scheduled for next week.

But if the system becomes overwhelmed, others in the future may not be so lucky.  We must stop the COVID-19 infection rate increasing!

I started off the post with a leaflet explaining the logic and simple steps to avoid spreading viral infections. These work for flu as well, and one welcome side effect of the isolation rules is that fewer people are contracting flu this season!

Here are just a few of the public notices around Mordialloc I see every day advising people about COVID-19:

I’m sure these informative signs are replicated in every suburb – authorities can only do so much – members of the public must cooperate.

Being in the high risk age group with underlying health issues, I sincerely hope people will make the effort to be informed and obey the rules so we can suppress the rapid spread of this coronavirus.

Support all those frontline health workers, plus the workers in other occupations who have remained or returned to work and must cope with new rules and the compliance necessary to combat COVID-19.

Fb meme about kindness.jpg

 

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.

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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!

 

 

 

A Twitter Feed That’s Addictive And Uplifting

morning feed lorikeets

I’ve always found refuge and comfort in words whether writing, reading, talking or listening…

However, perhaps it is ageing and adjusting to retirement or the weariness of coping with this latest cancer diagnosis, but the urge and even the passion for creative writing is difficult to muster.

Snatches of poems and stories still swirl in head and heart, but that’s where they usually stay – no ‘writer’s block’ just disinterest or lack of energy to go the next step.

Maybe I need to remove self-imposed pressure and unrealistic goals.

I haven’t fallen out of love with the art of writing, just facing the use-by date of some goals and dreams I thought important or achievable. 

Conversations with self and the in-depth reflections that often accompany a cancer diagnosis, especially when it strikes again, have led me to a new passion and much-needed relaxation.

Or rather, it has encouraged an expansion of an existing fascination and another project.

I’m talking about protecting birdlife – especially the ‘backyard birds’ I see every day – and creating a garden for man, beast, bird, bee and butterfly to enjoy.

sunflower 2

It is addictive watching the interaction when birds visit the front garden, listening to their chitter-chatter – delightful twittering.

And like the paparazzi, I try to capture the perfect photo!

They inspire me to write – not for anyone else but myself and for fun – two elements missing in the years of planning lessons, teaching technique, and inspiring others to write and publish.

I don’t have to feel guilty about writing for pleasure, or that the pleasure is mine!

pretty polly 2

Words Have Power

Words are a powerful form of communication.  I love the nuances and capabilities of the English language, although the multiple meanings and grammatical rules are complicated and confusing when you are trying to master it.

Choose wisely, check the dictionary, listen to the tone, think of interpretation…

The influence of poems, stories, and novels can stay with you for life, also excerpts of dialogue from a dramatic script or film. Favourite song lyrics may move you to tears and can take you back to an important moment in time when you hear the song.

Putting it in writing’ and sending letters or emails, recording a journal or updating a diary, even keeping a blog are all valuable forms of expression to share ideas, feelings, and creativity and wonderful when it is not a chore, venting about injustice, or keeping a friendship alive.

I hope to return to feeling elation when my words work.

Word Choice Matters

The pen can be mightier than the sword but that depends on the opponent and circumstance – wars are fought and won with military hardware and signed contracts of peace don’t seem to wield the same power.

The belief ‘sticks and stones will break my bones but names will never hurt me’ is patently untrue.

The toxicity of social media attacks and resultant damage, plus the terrible toll of suicides after bullying (virtual and physical), proof that name-calling, insults, false accusations and misinformation hurt and destroy. (The pen is as mighty as the sword?)

We have, as an example, President Trump, one of the most powerful leaders in the world, and his use of Twitter. He is certainly someone who has brought the medium into disrepute more than others, but there are many other examples of what reporters call ‘Twitter fights” – and suddenly someone has their account cancelled or removes themselves voluntarily.

In the digital age, the reputation of journalism has also taken a hit, especially when clicks are more important than content. The lack of digital literacy in the community is a worry.

There are many recorded instances of two-quick Twitter reactions/responses, and the toxic comments of trolls and others who comment with online anonymity creating more articles so that often the important news or original topic is ignored.

Poison-pen letters and nasty critiques existed long before the popularity of social media, but the digital age and the speed and distance words travel makes me content to have a twitter account of the feathered variety!

And once sent out a word takes wing beyond recall.

Horace 65-8 BC: Epistles

Not that you can ignore ‘progress’ or technological change. I did introduce my students to Twitter and we had fun writing poetry and flash fiction – a totally different use than what it was designed for – although President Trump’s tweets could fall under the category of fiction but not poetry!

these legs were made for wlaking

For the past year, walking by Mordialloc Creek and the foreshore, exercising Josie around suburban streets, exploring local parks and those further afield, provides comfort and delight but contentment is revelling in the joys of my garden’s flora and fauna.

The pleasure deepens sharing these activities with my daughters and friends.

Man does not live by words alone, despite the fact that he sometimes has to eat them.

The Wit and Wisdom of Adlai Stevenson (1965)

white heron and silhouette

dusky moorhen

The real world often disturbs these idyllic routines of the natural world.  Politics, protests, the climate emergency and mundane household maintenance intrude, along with a persistent inner voice that I should be ‘doing’ or ‘achieving’ – getting the hang of this retirement gig is difficult!

Every time I think that I’m getting old, and gradually going to the grave, something else happens.

Lillian Carter

A Comforting Stillness
Mairi Neil

In the stillness of the evening
a hush
birds nestle in the trees
until daybreak

In the stillness of the evening
a rustling
nocturnal animals forage
until daybreak

In the stillness of the evening
a hush

Above the stars twinkle
clouds veil the moon
the Milky Way cascades in flashing lights
a reminder each day a star is born
in the endless universe
yet, no sound reaches Earth

In the stillness of the evening
a hush
a rustling
a silence
my heart beats a sweet rhythm
thinking of you.

An Urgent Plea Received

Dear Mairi,

The bushfires have been worse than any of us could have imagined. If you (or anyone you know) has been affected, our hearts go out to you.    

BirdLife Australia is coordinating the response for threatened birds nationally and our fire mapping has identified the species most impacted by the inferno. Now is the time for us all to take urgent action.  

We believe millions of birds were incinerated in the blaze. Millions more have lost habitat and face starvation right now. I fear many birds, like the Rufous Scrub-bird, will soon join the list of threatened species. Their future is in our hands…

We have the plans and the people in place, but we know it will take at least $2 million to begin priority actions to save the most threatened of the birds impacted by the fires.

With your urgent help today, we can:

  • Get survey teams into fire zones as soon as possible to find threatened birds
  • Help birds recover by protecting them from predators and supporting habitat recovery
  • Rebuild populations over the long term, through actions like captive breeding programs

http://www.birdlife.org.au/

magpie in shade

Birds live in a range of habitats, making them useful indicators of what is happening in the world. Across the globe and throughout Australia, birds take exciting journeys to search for food, to follow the rain and look for breeding sites. Learning about birds helps you connect with the natural world and helps us understand more about the environment we live in.

While we enjoy a position at the forefront of bird conservation, our work is far from done. With 238 Australian birds already extinct, threatened with extinction or near threatened, we need to ensure that we don’t lose more of them.

glass owl paperweight

I’ve written recently about the extent of the devastation from bushfires, drought and climate change, but also how the threat of extinction for many of our birds has hung like the Sword of Damocles for years.

We are running out of time to address the climate emergency, but we can all contribute to protecting and improving the aspects of our local environment necessary for native wildlife, especially the birds.

Bird species have incurred huge losses, not just because of climate change, but habitats have succumbed to development, domestic cats, and a recent study of millions of birds killed by flying into the glass windows of highrise buildings is a sad read.

We can make buildings safer for birds. Architectural elements like awnings, screens, grilles, shutters and verandas deter birds from hitting buildings. Opaque glass also provides a warning…

New York City recently passed a bird-friendly law requiring all new buildings and building alterations (at least under 23 metres tall, where most fly) be designed so birds can recognise glass. Windows must be “fritted” using applied labels, dots, stripes and so on.

The search is on for various other ways of warning birds of the dangers of glass walls and windows…

A zen curtain developed in Brisbane has worked at the University of Queensland. This approach uses an open curtain of ropes strung on the side of buildings. These flutter in the breeze, making patterns and shadows on glass, which birds don’t like.

sunset at beach

Create a bird-friendly garden

Birds need a home to breed and bring up their families. Their natural habitat normally provides food, shelter, water and nesting sites, but in urban areas they need help.

BirdLife.org advise how to create a suitable habitat in backyards, parks, bush reserves and even wider communities. Here are four of their fact sheets:

magpie atop hills hoist

lorikeets enjoying the new seed block

Mordialloc Meditation
Mairi Neil

On Main Street, Mordialloc
the lull of evening signalled
by oh, so familiar sounds…
birds jostle and joust
for palm tree frond, gum-leafed house.
Dusk descends into twilight glow
the tweets and squeals
a deafening crescendo –
a cacophony of conversation:
Time for bed.
Nestle down!’
That’s my branch…’
Move over magpies!’
All must know their station
in life. There’s a sense of place,
chatter, bargain, even squabble
but eventually sharing space.

Stop skylarking about!
You lorikeet lout!’
Squeeze over sparrows.’
How precious are parrots?
Pigeons! The rooftops are home for you
go mutter your usual “coo-coo”…’
And in the gloaming, shadows
of building construction loom,
mounds of dirt in lonely gloom.
A treeless landscape, evictions rife
Mordi’s birds may face a new life.
I remember a bloody chainsaw day
shake my head and turn away…
Continue to walk by Mordi Creek
watch the ducks silently glide,
a cormorant rest in contemplation
this beautiful tranquillity
a sanctuary from conurbation.

How lovely the shimmering ripples
of boats tethered for the night,
feathered friends dive and feed
in the fast-fading light.
A familiar outline against the sky
silhouettes of ancient trees
reminding us of when this creek
hosted Bunurong corroborees.
The path peopled by dog walkers,
and school children hurrying home
joggers and health fanatics
grateful for the space to roam.
In the eucalyptus evening hush
this precious part of the day,
Mordialloc Meditative Therapy
chases my doldrums away.

australian raven 2

Hitchcock’s Crime Against Birds

I’ve always had a fascination for our feathered friends, but nursed a fear of close contact after seeing Hitchcock’s The Birds!

Nothing equals The Birds for sheer terror when Alfred Hitchcock unleashes his foul friends in one of his most shocking and memorable masterpieces… beautiful blonde Melanie Daniels rolls into Bodega Bay in pursuit of eligible bachelor Mitch Brenner. She is inexplicably attacked by a seagull. Suddenly thousands of birds are flocking into town, preying on school-children and residents in a terrifying series of attacks. Soon Mitch and Melanie are fighting for their lives against a deadly force that can’t be explained and can’t be stopped in one of Hollywood’s most horrific films of nature gone berserk.

Released in 1963, I must have seen The Birds on television in 1968 or soon after – I would have been 15 – but it could have been yesterday because it is one of those movies you never forget.

Hitchcock was a master at creating fear and who would have thought a movie with such an innocuous title could be terrifying?

It took me years to look at birds with admiration, not suspicion. And it is amazing how many people I have met over the years who were affected by that film!

For years, I preferred to keep a distance from birds, disliked seeing them caged and envied their ability to fly, but still held an irrational fear they’d try and peck at my eyes.

If you read the trivia notes on IMDb, they reveal the treatment meted out to the birds on the set of the film – behaviour not tolerated today – we should feel sorry for them not the humans.

bird feeding frenzy

Ten Birds Regularly Visit My Garden

Google Backyard Birds, to discover a host of information on birds found in Australian backyards; each state gets a mention.

Depending on what suburb you live in, the following birds will probably be common visitors.

Noisy Miner

baby noisy miner
Noisy Miner

Common Myna

common myna
Common Myna

Australian Raven

australian raven in garden
Australian Raven

Grey Butcherbird

butcher birds visiting
Butcherbirds

Magpie

magnificent magpie
Magpie

Magpie-lark

magpie-lark 3
Magpie-lark

Lorikeet

lorikeet in vivd colour
lorikeet

Red Wattlebird

wattlebird
young wattlebird

Spotted Dove

spotted dove
spotted dove

Sparrow

a very tiny sparrow
tiny sparrow

I admire and respect the tenacity and survival instincts of the bird population; their cleverness and beauty, their strength despite such fragile frames. For years, a blackbird family built their nests in the Photinia trees that line our back fence and watching the birds fly back and forth with twigs, discarded pieces of plastic and other debris hanging from tiny beaks proved how adaptable and innovative they can be.

Little Blackbird
Mairi Neil

Oh, little blackbird
with your puffed-out chest
to some your song is sweet.
Others, they despise you
native birds must compete.
You build a nest
to lay your eggs —
eat up all the food
the native birds fly away
a situation far from good
Some say we should leave
Mother Nature well alone
birds are free to travel
they often widely roam.
Perhaps accusations are absurd
because the sky is limitless
and belongs to ALL the birds!
©1997 mn

Last year, I filmed a magpie ripping threads from a coir mat and flying off to build a nest.

Drought and urban development shifts bird populations. Mordialloc now echoes to the screeching and chittering of flocks of rainbow lorikeets, especially in the evening when they roost in the iconic date palms lining Main Street, the prolific sparrows and thrushes of earlier years forced elsewhere.

Marauding Mimics
Mairi Neil

They appear on the lawn
like four pirates of old
strutting and aggressive
noisy and bold.

Fixing beady eyes
on a treasure trove
they bully incessantly —
taking what they love

They’ve come to this land
from across the sea
in an ideal climate
they thrive with glee

They raid and steal
do what pirates do best
the Common Myna
has become quite a pest
© 1996 mn

The cockatoos and galahs are still around but prefer the open area down by Mordialloc Creek.

galahs at the park
galahs feeding

Melodic butcherbirds and bullying wattlebirds have made their home in grevillea and banksias, ensuring the smaller birds rarely visit. The sky often patterned by flocks of migrating birds from the nearby Edithvale Wetlands.

Sometimes one or two rare birds choose my garden for a rest or snack instead of ‘eating on the wing’, the experience a delight, but Murphy’s Law dictates my camera is never ready to capture the moment!

Wandering in the garden with my morning cuppa, I’ve recorded quite a few of the bird calls because they are so beautiful. Identifying the singer often leaves me intrigued. Most birds are gifted with plumage to match their preferred habitat, they blend into tree foliage, the bushes, reeds or grasslands with ideal camouflage.

two lorikeets whispering
two lorikeets have the perfect cover

Shadows
Mairi Neil

The plaintive song echoes
in the university grounds
as students hurry home
past skeletal branches
of winter trees
hosting the bird’s lament

a mournful echo
of dinosaur dynasties
amid the whirr of bicycle wheels
tapping footsteps
ringtones
mobile conversations
iPod seclusion

a wistful whistle announces dusk
until full-throated celebration
a melodious call to rest
lights douse
classroom doors close
shadows deepen
the campus empties

crowded trams trundle by
bathed in artificial sunlight
tall grey buildings reach
for a star embroidered sky
this call of birded tongue
conjures ghosts
of long-forgotten species.

The Kookaburra Laughs In The Old Gum Tree…

When my family first arrived in Australia, in 1962, magpies proliferated in bushy Croydon, so did kookaburras, rosellas, cockatoos and galahs. Most of those birds absent from Mordialloc when John and I started our family here in the 1980s.

The last kookaburras sighted in nearby Bradshaw Park long before I joined the Friends group and worked to save the remnants of indigenous flora and fauna from encroaching suburbia. Bradshaw Park is the only native bushland reserve in Mordialloc and is home to 136 native species – some of which occur nowhere else in Mordialloc.

Rangers have sighted 33 native bird species, but introduced birds thrive too.

Tuneful blackbirds, thrushes and common mynas gobbled the crumbs I scattered each morning (a politically incorrect habit learned from Mum and Dad that I’ve now ceased!).

As I learned from others in the Friends group and planted indigenous trees and flowers, after many years, some native birds now call the trees and shrubbery I’ve nurtured, home.

Recently, a dear friend of 50 years visited from London. Nobuko stayed with other friends in Olinda before me and brought me a teatowel made locally as a gift. It reminded me of childhood trips to visit Sherbrooke Forest.

teatowel from nobuko

These rosellas are often seen up in the Dandenongs but there is another bird I have only been lucky to spot a couple of times in my life – very special memories.

Lyre Bird’s Lair
Mairi Neil

A forgotten memory surfaces strong
feeds a yearning now the days are long
an image of childish eyes entranced
the memorable day the lyrebird danced.
Performing his unusual repertoire of sound
the lyrebird proudly claimed his ground
tail feathers splayed shimmering white
hiding his head from onlookers’ sight
without colourful peacock arrogance
he began his shy seductive dance.
Throughout the day lovers came and went
until the lyrebird’s energy spent
and he disappeared amongst the trees
ephemeral as the morning breeze.

Walking the paths of Sherbrooke Forest,
enthused by dreams of aeons past
I hope to glimpse again the lyrebird’s dance
Tho’ its talent for mimicry limits my chance.
This bird can repeat the magpie’s trill
replicates man-made sounds at will –
chainsaw, hammer, or car alarm
he’s perfected them all as part of his charm.
The picnic area leads to the nature track
warmth of dappled sunlight upon my back.
Cloaked by primeval ferns dripping dew
I abandon pungent asphalt; exhaust fumes too
farewell gravel crunch, and human chatter
leaving creek where mosquitoes scatter.

Winding upwards to the whistling wagtail
I try to spot him but to no avail
a flurry of wings, camera shy rosella revealed
the foliage of Sherbrooke a perfect shield
As ancient eucalypts climb towards the sky
an eastern whipbird’s distinctive ‘crack’ nearby
spongy deep green moss cushions city feet
ornamental fungi from undergrowth peeps.
Vegetation hugs the path and sprouts native grass
exposed skin tickled as I stride past.
Eucalyptus tang replaces rich loam smell
the towering Mountain Ash cast their spell
fragile maidenhair ferns decorate the trail
flighty butterflies appreciating their veil.

Panting with the exertion of the climb
each pause filled with birdsong sublime
my misty breaths join whispering trees
a nearby rustling makes me freeze.
Low in the fork of a wattle tree
a sight I never expected to see
constructed with meticulous precision
a female lyrebird’s nesting vision.
A beautiful ball-shaped structure appears
the perfect home developed through years.
Of evolution, and remarkable adaptation
what an amazing bird unique to this nation
but alas like the palette of fleeting dawn
the enigmatic lyrebird and chick long gone.

© 2013

 

 

When Life Throws a Curveball, Love, Friendship and Kindness Nurtures Resilience

 

bc package.jpg
message on My Journey Kit

Last month breast cancer loomed large in my life again when an annual mammogram and ultrasound detected a small tumour.

If the worry about bushfires and climate change wasn’t enough to shatter equilibrium, here was a personal crisis requiring me to face pain, grief, loss and other assaults on happiness.

Supposedly, the season of goodwill, quality family time and holidays –  I had a list to complete:

  • putting up a tree and decorations so the glorious smell of pine resonated throughout the house confirming Christmas
  • celebrating the successes of the year – my daughter and I published four books for people wanting to leave a record of their life or a legacy for family
  • publishing a class anthology – an annual event to crown a year or semester of writing for my students
  • shopping for presents for loved ones and friends and writing cards or emails for those annual catch-ups
  • planning outings for visitors from overseas and looking forward to returning a little of the hospitality I received when I travelled to Europe and UK 2017
  • cleaning and decluttering and other rituals associated with Hogmanay – the traditional Scottish New Year, which since childhood signals clean sweeps of cupboards and wardrobes
  • writing a final blog post for the year to share my poems published and play shortlisted in 2019 enabling me to lay claim to the title ‘creative writer’ …

good luck flowers from girls.jpg

The best-laid schemes of mice and men gang aft a-gley

Rabbie Burns

Diary of An Unwelcome Diagnosis

Monday, December 2     Mammogram and ultrasound at Mentone. The radiologist said nothing but her body language; the time spent on the ultrasound, the check of x-rays just completed …  a tiny fear formed in my stomach …

‘When are you seeing the breast specialist?’

‘Thursday.’

‘Good. He’ll get the results and report.’

Thursday, December 5  the annual check-up with breast surgeon Peter – nine years since my mastectomy.  I could tell by his body language this visit was not going to end with Happy Christmas…

‘Not great news… something there, probably a cyst… how do you feel?’

‘I’ve had pain, on and off … thought it was coming from my neck …  too many hours at the computer…’

Ever solicitous and kind, Peter asked if he could examine me,

‘Where is the pain… Good, not about the pain but I can’t feel any lump, can you?’

‘No.’

He showed me the mammogram report and the ‘cyst’ causing concern…

Conclusion: New right breast 8 o’clock lesion 50mm from the nipple. This can represent complex cyst or fibroadenoma, ultrasound guided biopsy will be helpful.

‘I’ve arranged for you to have a biopsy tomorrow at Mentone – a fine needle aspiration, and, if necessary, a needle core biopsy.’

‘Needle core biopsy? Oh, that hurts… I remember…’

‘Probably won’t be necessary and I’ve requested Dr Ron Sher do it – the top man!’

Friday, December 6   I spent the night convincing myself and the girls it was a cyst. Routine follow-up biopsy. Peter being cautious. Rather than have my daughters miss work, I caught the train to Mentone and arranged to text my dear friend Lesley when finished.

I’ve had several needle aspirations and knew it would be uncomfortable but did not realise how rough that day would be.

The small room filled quickly with ultrasound equipment, two radiologists and a nurse who with Florence Nightingale compassion held my hand and stroked my arm as a fine needle aspiration became 5 core biopsies.

I received some local anaesthetic permissible for the procedure and remember stilted snatches of conversation as I fought back tears to survive the torture. Everyone was thoroughly professional and empathetic, apologising for the pain being inflicted and allowing me to catch my breath between ‘shots.’

With a collective sigh of relief almost an hour later, I took my bruised breast and instructions for care – and left.

‘You’ll get the results Wednesday at the latest.’

Again, a reading of the body language started foreboding… Lesley took one look at my flushed face and asked if I wanted to go straight home rather than have the coffee and chat we planned.

‘No, if I go home, I’ll curl into a ball and cry – let’s go to Truly Scrumptious and overindulge. I’ll buy you lunch and promise not to cry in public!

truly scrumptious.jpg

Truly Scrumptious lives up to its name; the ambience, food and service always great. And Lesley, my oldest and dearest friend in Mordialloc, was the most understanding and ideal companion for the start or was it the continuation, of my breast cancer journey.

‘Can’t believe it’s nine years,’ we said in unison as we sat down facing each other.

Later with a heightened sense that life is finite, I admired how window boxes outside softened bricks and mortar, beautifying ugliness.

Lesley shared her knowledge of plants, explaining the popularity and usefulness of Star Jasmine. (She bought this plant for me a couple of days later. Bless her!)

I’m greeted at home with a ‘pamper pack’ from my daughters: Vera and Shetland DVDs, massage oil, Bio-oil, a crossword book, chocolate, butter menthols, Rescue Remedy, calming Lavender oil – no pretence, memories of years before, a fear voiced and unvoiced – suppression of mild panic?

Lots of spontaneous hugs and expressions of love.

 Monday, December 9   Sitting at the computer, completing the final edit of a class anthology, Peter rang to say the pathology arrived.

‘I need to see you tomorrow and you’ll be in the hospital next week.’

It was after 8.30pm. A little voice inside commended his diligence for checking the pathology results and letting me know straight away but I blurted,

‘I can’t come tomorrow, I’m working. It’s the last class for the year… I can’t miss it…’

‘Well, come to my rooms as soon as you can after finishing work. I’ll tell my secretary to expect you when you can make it.’

Concentration weakened and no ‘good’ night’s sleep ahead!

I made stupid mistakes editing the class anthology – thankfully, my work (always the last included) and not a student’s.

The copy since corrected – bless the digital world! But the news of cancer returning was the beginning of a month of inner turmoil and ‘putting on a brave front’, the shrivelling of any desire to write or have confidence in what to write.

Read the anthology here – some fine writing from the students and always interesting to see the varied reactions to same or similar prompts: Longbeach place anthology December 2019

Tuesday, December 10   while preparing for the final class of the year radiologist Ingrid from Mentone rings, ‘How are you feeling? How is your breast?’

I’ve never had a follow-up phone call before and thank her while explaining I’d be seeing Peter that afternoon. I got through the class with a tight knot in my stomach and tears burning the back of eyelids.

After sharing the disconcerting news and showered with love and concern for what lay ahead, we played some fun writing games.

Would this be the last class I teach?

 

class anthology completed 2.jpg
Some writers in the anthology: standing – Susan O’Shea, Ann Hammann, Cynthia Tuvel and sitting: yours truly, Tricia Wasson and Judy Keller.

Late afternoon, daughter Mary Jane came in with me to hear Peter explain the result of the biopsies. He showed me the report – a paragraph of scientific gobbledegook swimming before my eyes but the last line, in capitals and underlined:

 

RIGHT BREAST 8.00 5CM FROM NIPPLE CORE BIOPSY – FEATURES CONSISTENT WITH ADENOID CYSTIC CARCINOMA.

‘This is a rare cancer, but we’ve caught it early. You may need some radiotherapy but no chemo…’

I glanced at Mary Jane who was taking notes (always have someone you trust with a notebook!) in case I mishear or forget the conversation.

Tears glisten and she struggles to keep it together while I surprise myself at feeling so calm. I joke to break the tension,

‘Of course, it’s a rare cancer, I’m a rare person!’

Amid the laughter, Peter explains I’d have a blood test before I leave and his receptionist will explain the arrangements for a sentinel node biopsy and hospital booking.

In a room down the corridor, Jack draws blood – an unusually pain-free experience. Well done Jack!

Many people struggle to get blood from my veins – and it’s not because I’m Scots and we give nothing away!

While Jack worked, we discussed taste in movies – he was young but didn’t like Sci-Fi or Marvel movies, preferring Realism.

Then he expressed his annoyance with computer technology – a new program recently installed by IT made his life more difficult not easier.  Ah, a familiar story – just hope whatever details of mine fed into the machine arrive where they’re supposed to!

In the evening, daughter Anne stays the night – there are tears, cuddles, cider, a favourite funny DVD that has us laughing…

We’ll get through whatever lies ahead – we’ve done it before. There’ll be disrupted sleep patterns ahead, inappropriate food choices (who said chocolate is bad for you?) and a rollercoaster of emotional energy including outbursts, tears, withdrawal and fear.

We cancel our holiday to Port Campbell booked months ago. We were to leave on Boxing Day but with the operation scheduled for Tuesday 17th, I probably won’t feel in holiday mode, nursing a sore boob. Nor will I be able to walk the dog and the attraction of Port Campbell was the dog-friendly cabin.

Wednesday, December 11  I receive a call from Brightways, a breast care nurse cancer service. They want me to come to Cabrini on Friday morning and talk about the operation, what to expect and how they can support me.

Beautiful flowers arrive from Tash, a dear friend who claims to be daughter number 3:

flowers from Tash.jpg

Joy and Fun lighten the mood…

At 10.00am my friend Jillian picks me up and we attend an end-of-year concert by Silver Blades, the Olympic Ice Skating Group of Oakleigh.

Jillian’s friend Rosey one of the group that is a mix of ages. However, the majority retired and/or aged pensioners. Seniors skating on (thin?) ice – haha!

To the strains of Abba’s Mamma Mia and other upbeat tunes, the Silver Maids (and a token male) glide around a skating rink I hadn’t visited for 40 years.

The solo displays of skill, fun, themed, team displays, glossy and glittery costumes, and a grand parade delightful and impressive.

Suddenly, it’s home time. Thank you, Jillian, for a bright spot in a so so week!

On the drive home I reminisce about teenage years in the late 60s.

A carload of excited adolescents looking for romance and excitement or just freedom from the mundane travelled from Croydon to Oakleigh on Friday or Saturday nights.

We spent most of the evening clinging to the barrier, bumping into each other or on our bottoms before returning home sitting on towels to protect the car upholstery.

I remember a lot of laughter, cold numbness of hands and feet and the discomfort of wet jeans!

Jillian is my walking buddy, a good friend, and an inspiration. A patient of Peter’s who survived breast cancer – twice, she shared that her second cancer different too and occurred thirteen years after the first!

I imagine Jillian has experienced the tangle of thoughts coursing through my mind.  A FB post makes me think Google is listening not just to my spoken words but thoughts!

happiness poster.jpg

Wednesday, December 11   News is spreading to dear friends and family. A close friend and writing colleague, Lisa turns up with a beautifully worded card, a box of sunshine, plus empathy and support.

I can unpack the contents one by one or all at once – I do it gradually but here are pics of the wonderful, thoughtful, organic products – what a box of loving sunshine!

Another friend Glenice pops in with ‘fun’ presents for under the tree and words of love and encouragement. Her husband’s health is frail yet she’s taken time out to visit me and I know she is supporting others through health crises.

Emails from friends and relatives in the UK and those living here also cards form ex-students. The cliches ‘no news is good news’ and ‘bad news travels fast’ spring to mind.

Maureen calls and continues to do so regularly, also sends texts and emails. She visits with chocolates, DVDs and buckets of love.

Barbara calls and later visits with a gorgeous orchid.

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All the support and love is humbling… and a sharing of the collective strength of resilient women memorable.

‘I bounce – we bounce!’

Thursday, December 12  Longbeach Place staff break-up lunch at Chelsea RSL. A nice meal and we cover various topics while not dwelling too long on stories about breast or any other cancer!

I learn that the State Government funding body has decided not to fund writing classes in neighbourhood houses – not enough employability outcomes for the demographic attracted to the classes. Not surprising since many of the students have retired that’s why they have the time to study non-Accredited courses in community houses. But surely improving skills and education access doesn’t stop – whatever happened to a commitment to lifelong learning?

I’m disappointed we seem to have moved far away from the initial concept of why community houses developed and that wellbeing and social capital don’t get a look in nowadays.

Yet, so many studies and reports talk about the challenge of our ageing population, combatting loneliness and depression, cultivating belonging, easing the tragedy of mental illness, the need for ESL students to learn the nuances of English, the importance of recording personal histories.

Ah, well, interesting timing…

quote about being

Friday, December 13   Superstitious people say the day is unlucky but I have already compromised my luck! Anyway, Dad always said 13 can be lucky – he was thirteenth in his family, was born on 13th March and had thirteen letters in his name. He always chose 13 as his lucky number.

Bronwyn, the smiling face on the Brightways brochure meets us at Cabrini. She explains the role of breast care nurses and gives me a lovely floral pillow to use post-op.

There is not an available bra in my size but she promises they will post a free Berlei bra to me. I’m advised to register for My Journey Kit from Breast Cancer Network Australia. The kit available online.

‘Thank goodness – I remember when the hard copy arrived by express post last time.’

‘Yes, the size of a couple of house bricks,’ Bronwyn said with a smile.

‘Overwhelming too – at least online I can choose what to read, download or skip.’

Thank you Berlei – funding My Care Kit is an altruistic, much appreciated financial commitment.

Estimated number of new cases of breast cancer diagnosed in 2019
19,535 =   164 males +  19,371 females

Estimated number of deaths from breast cancer in 2019
3,090 =   32 males +   3,058 females

Chance of surviving at least 5 years (2011–2015)  91%

People living with breast cancer at the end of 2014 (diagnosed in the 5 year period 2010 to 2014)              71,943

Data source: (https://ncci.canceraustralia.gov.au/diagnosis/cancer-incidence/cancer-incidence)

I’m not special – just one of many living with a breast cancer diagnosis – I acknowledge how entitled and fortunate I am to be in Australia with a network of professionals and access to excellent medical care…

At Cabrini, there were reminders of Christmas and the spirit of giving:

On the way home, we discuss the information about the operation – a lumpectomy this time – and the logistics of getting to and from the hospital.

We’re aiming for upbeat.

I notice a car parked by the side of the road and we giggle about alternative business names after Anne googles the company…

The girls drop me home and pick up a Christmas tree. We spend a lovely couple of hours decorating the tree, discussing arrangements for Christmas Day and leaving all Christmas shopping to them.

I almost feel normal!

christmas tree.jpg

Monday, December 16   On this date, 57 years ago, nine-year-old me arrived in Australia with my family. This bit of sentimental trivia sprung to mind as I prepared to go to I-MED Radiology Moorabbin for a Sentinel Node Injection before surgery.

They sent me a video to watch to prepare – this is not a pain-free procedure you’d volunteer for!

Jess, the young lass who injected small amounts of radioactive dye around my nipple apologised for the pain and said I was very brave – often people cry or baulk at the procedure.

After the injections, I had to massage the breast to make sure the fluid distributes evenly. ‘Positively erotic,’ I joke, ‘if it wasn’t so painful!’

Jess and Mary Jane laugh.

The next step, a scan and gamma-ray photo to show the radiation has highlighted the tumour and lymph nodes. Apart from a dull ache in the breast and the beginning of a tension headache, I feel fine. Alas, no turning into the Hulk with super strength!

blue moon rose.jpg

Tuesday, December 17   The Blue Moon rose growing outside my window, vibrant and beautiful as I got into the car to head to Cabrini for 10.30am. Both girls were with me and in true grief/loss reaction, I feel guilty they are going through this trauma a second time.

We don’t voice our fear – will things go pear-shaped like last time? (A lumpectomy, haematoma, more cancer discovered, mastectomy, mistaken chemo dose and pneumonia… ) Please no ‘Oops.’

Flashbacks to John’s death and feeling his absence keenly. None of us slept well – me least of all – it was after 1.00am when I drifted off, before waking at 2.00am.  John’s sister, Janet rang from England, sending love and wishing me luck.

How lovely to hear her voice, know her genuine concern but she’d forgotten how many hours difference between zones so I was the dopey – and then couldn’t sleep much afterwards because many memories stirred.

And then one of those inexplicable experiences occurred – did I imagine, dream, hope? There’s a shadow in the doorway of positive, loving energy – John, Mum… the little girl whose spirit lives in the house?

Will I get through this latest health hiccup? Is this a primary or secondary cancer? What is death like? What is life about? What have I achieved? Does it matter? What is my legacy? Will the girls be okay?

Wide awake I didn’t need the alarm to go at 6.30am so I could have a light breakfast before fasting at 7.00am!

The operation was super successful (a huge thank you Peter!) and although Christmas cards were late; I sent them out with this ditty:

An Excuse of Sorts
Please pardon this generic computer note to explain
how plans derailed when breast cancer struck again.
Mammograms, scans, doctor visits, biopsies,
hospital trips, lumpectomy and opinions galore…
this whirlwind treatment left my only boob sore!
But the surgeon triumphed, ‘I got all the tumour -‘
I smiled thanks from my drug-induced stupor,
Therefore, if he’s that happy, why not me?
I’ll also revel in being again cancer-free!
Now this health hiccup came at an awkward time
so please, accept my apologies in this twee rhyme.
I’ve been otherwise busy to muster the usual cheer
but rallying like a true Scot, ’Here’s to a guid New Year!’
                                                                          Mairi Neil 2019

quote about life changing

Another Facebook meme doing the rounds seems appropriate.

I’ll get back to writing about important happenings not centred around me in the next few posts. Finish the ‘to do’ and partially written list!

Meanwhile, to all those who read my blog. Belated best wishes for a productive, prosperous and most of all peaceful 2020

 

 

 

 

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