38 and Impermanent

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone…We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

Atul Gawande, Being Mortal: Illness, Medicine, and What Matters in the End

‘There are three types of courage needed to live fully, face death directly, and discover true freedom: the courage of the warrior, the courage of a strong heart, and the courage of vulnerability.

Frank Ostaseki, The Five Invitations: Discovering What Death Can Teach Us About Living Fully

The two parts of genuine acceptance – seeing clearly and holding our experience with compassion – are as interdependent as the two wings of a great bird. Together, they enable us to fly and be free.

Tara Brach, Radical Acceptance: Awakening the Love that Heals Fear and Shame Within Us

Travel is a great equaliser. We are caught with our selves and share time and confined space with fellow travelers. We meet strangers with whom certain social formalities are quickly dispatched. Stories are easily shared and hearts are opened as we become aware that we each carry with us our narrative. The freedom of the open road, a desert plain, an empty, curving beach encourages our souls to be that bit more vulnerable, to explore, to ask questions that the usual every day busyness does not allow time or space for.

We have been on the road for three calendar months. I thought I’d luxuriate in hours of reading, writing, and quiet reflection, but my children take a less philosophical approach to life. We’ve been saturated in the beauty of endless clear skies, blazing sunshine, to-die-for waterholes of every aqua hue, and we never cease to be amazed at another vast expanse of emptiness. Not nothingness, for it feels turgid with life. The buzz of unseen insects, or the crackling of barely-living stems of generic, brown grasses, holding on for the coming rains. But they are living and holding on. A sparse forest of bare bushes appears able to support ten or twenty massive wild buffalo.

And as we’ve moved from coast to savannah to desert to mountain to gorge, the shifting, drifting but ancient vastness of it has emphasised our very, very impermanent little selves. The first weeks were marked by excitement, nerves, and adventure, but also by a background, busy, constant inner monologue, reflecting on the last weeks, months, and years. I found myself cyclically engaging with the whats, wheres, and hows of decisions and all their causative factors which had led to this decision to quit a job and immerse ourselves in family time. As time passed, and I was able to peel back the layers, I could better understand the underlying anxieties which posed as sensible-seeming interrogation of my every move. There was also avoidance of engaging at a deeper – dare I say emotional? – level with the immensity of what this trip meant to us as a family. It was something we had conceived of perhaps ten years in the future but which had been catapulted into our present to try and help Eva, in particular, reclaim a sense of ownership over her future. She was always hesitant to concoct any kind of bucket list, beyond enjoying and savouring her time with her children as fully and vivaciously as she could.

We continue to work out how to balance the hope of what we want for Eva and our family with the reality of her disease. For some people that is already a warning sign that perhaps we are mentally weak; nothing about metastatic breast cancer should be considered a ‘reality’! Pay no attention to the stats and figures! However, for better or worse, the pragmatic part of our natures would rather attempt to hold simultaneously what history has shown, and the possibility of being at the outer 0.1% on the far right of the bell curve. With every new ache and pain, we subconsciouly shift Eva’s position within the normal distribution up or down a standard deviation (or two). She is living fully and energetically, but with that comes the resultant discomfort of bony tumours under stress, and generalised fatigue.

Sunset, Karumba, QLD

Today, on my 38th birthday, the last twenty one of which Eva has been present for, impermanence and mortality shift tangibly and persistently in the very fabric of our day-to-day existence. Five days ago Eva was transferred by the Royal Flying Doctor Service (RFDS) from a small hospital in the centre of the Northern Territory to Alice Springs Hospital. She developed cellulitis on her right (lymphoedema) arm and, due to being immunocompromised from medication and cancer, she was deemed at high risk of sepsis. She’s been receiving vancomycin and cephazolin – for those who are interested – and seems to have stabilised, however not without the usual, predictable pains in the butt of being a patient. She is currently waiting to see another doctor this evening to try and get a peripheral line into her after her previous cannula tissued much earlier today (she missed her first and is now late for her second eight-hourly dose of antibiotics). Eva’s veins are shot from chemo and despite multiple attempts by nurses, another doctor, and with the assistance of a vein finder, no-one has been able to get access. So now there are talks of PICC lines (a medium-term line into the central venous system), or even a Portacath. A Portacath is a long-term – usually permanent – valve underneath the patient’s skin near their large, central veins just under the collar bone. These are utilised by people on long-term chemotherapy, or people who need long-term antibiotics.

Portacaths were mentioned to Eva when she first had chemo but it was not something she pursued (partly as she hadn’t planned on getting secondary breast cancer quite so quickly). However, it also feels like a rather ‘terminal’ or chronic step to take; even if it’s just used for antibiotics now, it is an admission that this will be used for chemo, once the cancer progresses further.

Amidst this we have two rambunctious children who have great expectations of any family birthday, and who are keen to visit mum in hospital and lure the nurses into their shooting random patients with their new boomerangs game.

Garanhan (Macassans) Beach, Arnhem Land, NT

On days such as these it’s a battle to maintain Ostaseki’s three courages: the warrior, a strong heart, and vulnerability. Sometimes it is easier to do one at a time; put your head down, keep your blinkers on, and be a warrior. Or let all defences go and soak in the largeness of the emotions, accepting all help offered without knowing what you really need, and giving in to the overwhelm of vulnerability. But maintaining a balance between the three for anyone, in any of life’s many difficult situations, is a lesson to be learned. In psychiatry, defence mechanisms describe the subconscious way our minds try to protect us by manipulating, denying, or distorting reality. For some this may be as simple as adopting a warrior ‘I can beat anything’ mentality. For others it is more complex; being convinced of one’s helplessness and inability to change a situation, and definitely not to change oneself.

I think engaging with mortality and impermanence is a wonderful way to interrogate our defence mechanisms. A paper to be published in NeuroImage next month has suggested that our brains protect us from thinking about death in relation to our selves; death is something external that, sadly, happens to others. One of the authors, Yair Dor-Ziderman, in an interview with The Guardian says, “The brain does not accept that death is related to us…[so] when the brain gets information that link self to death, something tells us it’s not reliable, so we shouldn’t believe it.” Different religious traditions and belief systems advocate spending time considering the fact of mortality. It’s interesting to be forced to ask, how would I act/think/speak/feel differently if I knew I was going to die in six months? Although Eva has been given no definitive timelines, the constant awareness has allowed us to be a bit more ruthless with the parts of ourselves or patterns of thinking that previously we might have not even noticed, or easily ignored. Being open to our own and others’ suffering (the courage of vulnerability), as well as the transformation in seeing ourselves as people who will be able to manage this unfolding – I want to write tragedy but perhaps that is too loaded. Journey? Process? Experience? – and still maintain our openness and humanity through it and after it (the courage of a strong heart). When we think of the worst imaginable tragedy – for many this would be losing a child unexpectedly – we have no idea how we would cope and are convinced that we’d shrivel up and die. Yet people somehow go on living. Irrevocably changed in the aftershock, unsettled and sickened by impermanence, but somehow still in the land of the living and engaging with the universe. This is the strong heart.

Tara Brach’s phrasing of this – genuinely accepting our reality by seeing clearly and holding it with compassion – is another way to manage these defence mechanisms. Defence mechanisms do what they say on the tin: defend us. How about if we were able to see clearly that what we are defending against is, in the context of death, perhaps our fear(s) of living, or of not living well? And how about if we treated that with compassion instead of burying it and distracting ourselves from it, and denying that it is even a thing? Gawande illustrates how we can apply a methodology (based on a physician’s dialogue with her/his patient) to these questions: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

Ubirr, Kakadu National Park, NT

Impermanence is not just about dying, and not just something that someone who has metastatic breast cancer needs to busy herself with. We are each riding a rollercoaster of impermanence, and one which we would do well to acknowledge. Much of the pain and suffering we experience is due to impermanence – or change. Perhaps by wrestling with this, even embracing it, we learn to live better by working out and pursuing well-being at any stage of our mortality. My 18th birthday was spent on a ship, in Ghana, sitting on the floor in a room where we played a game called teeth (long story, but piss-yourself-funniest game ever); on my 38th I sit in the dark on a campsite in Alice Springs, my two children asleep in the camper trailer behind me, my wife in hospital down the road, and a bottle of Great Northern and a bar of Cadbury’s to celebrate. All things change. The challenge is to embrace them all with courage, clarity, and compassion.

Great Northern and Cadbury’s, Alice Springs, NT. 38 years young.

On Your Birthday

It’s twenty years, minus a few days, since we met. You 19, me 17. Fueled by an insatiable energy of optimism, hope, and adventure, longing for a life of which we’d dreamed. But simultaneously deeply fearing and hurting, with only a fragile belief that we could create a life different from that which we dreaded. A two-sided coin. Maybe these kindred drives meeting at that time was how such a deep friendship could be laid so quickly. Maybe it was coming from two countries, meeting in a third, then living on a ship and traveling to 30 more that made this bond inescapable. Maybe it’s our dogged tenacity and this ongoing belief that beauty can always be created.

And here we are now, 20 years later, with plenty of battle scars along the way. If only something could record the intricacies and undulations of a marriage and friendship; the highest of highs and the lowest of lows. Now two little lives puff gently in their sleep at the other end of the camper trailer; here, in the middle of outback Queensland, yet right at the centre of where they should be.

39 years beautiful, and an honour to have been along for most of them with you. The future looks shaky and fearful, but it’s a privilege to face it with you. Again, this two-sided coin, of hope and love and enduring beauty, and fear and sadness and the feeling of powerlessness to change an outcome. The beauty’s excruciating, as is the pain, and it’s sometimes easier to keep both at bay. This traveling, this great unraveling, makes that more difficult to do. I’m glad we can unravel together.

Happy birthday to the best, the centre of our lives.

The Joy and the Sorrow

And that’s the thing. It’s like joy — sometimes I think there’s a conception of joy as meaning something like something easy. And to me, joy has nothing to do with ease. And joy has everything to do with the fact that we’re all going to die. That’s actually — when I’m thinking about joy, I’m thinking about that at the same time as something wonderful is happening, some connection is being made in my life, we are also in the process of dying. That is every moment. That is every moment.

Ross Gay, in interview with Krista Tippett, On Being

By accepting the truth of change, accepting that we don’t know how our life will unfold, we open ourselves to hope so that we can move forward with vitality and will…[M]uch of our driven pace and habitual controlling in daily life does not serve surviving, and certainly not thriving. It arises from a free-floating anxiety about something being wrong or not enough. Even when our fear arises in the face of actual failure, loss, or death, our instinctive tensing and striving are often ineffectual and unwise.

Tara Brach, Radical Acceptance

We’ve set off on a six-month road trip. It was a quick decision made after a camping trip at Easter, during which Eva felt the best she had done in some months. She is loathe to call it a bucket list event, but it was something we had always hoped to do as a family when the kids were older. It became clear, quickly, that if there was something we could do now, which added not only to Eva’s enjoyment of life but our quality of life as a family, we should do it now. It was a straightforward decision on an emotional level, but more tricky for me in regards to work; I had not long before started a new position in a capacity I was excited about which seemed to be a step in the direction of where I was starting to see my career going. This was exacerbated by my already disrupted medical career progression after a change of specialty and then Eva’s initial diagnosis of cancer. However, I’ve been wanting to practice an attitude of holding lightly to career goals or aspirations; partly because I know they can change, and mostly because I’ve always wanted to prioritise my own and my family’s wellbeing over the more traditional and visible markers of success and accomplishment. I was aware of this tension and I am still learning to sit with the discomfort.

Marmor, QLD

Our emergence into a 24/7 life together as a foursome in a camper trailer is taking shape. Already patterns and routines have emerged, all of which are underpinned by a simplicity which Eva and I were hopeful of. One of the most stressful aspects of her metastatic breast cancer on a day-to-day basis, is having to ‘manage’ it amongst all the usual trappings of life. Kids need to be tended to and brought to school or looked after at home. Jobs need to be done, long commutes need traversed, a home needs looked after. Whilst all these things are expected of all of us, I think we so often felt drained by having to conduct the ‘normal’ whilst simultaneously carrying this extra weight in our minds and hearts and, for Eva, her body. So often we have just wanted space and quiet to sit with the enormity of the thoughts and feelings that arise at times, but still to have the head space and energy to enjoy family life and to parent as we want. One thing we have both struggled with in various forms is the fear that our own experience of stress and worry is transferred onto our children in a way that is unhelpful to them. This is their life too, and their experience which they will have to go through, but we felt acutely aware of not wanting to add to that through manifesting our own tension. Which is obviously a potential spiral into self-perpetuating worry about worry which does no-one any good.

Brutus, our home for the next six months.

For us this family time together is about living fully in the present, and experiencing joy today. But Ross Gay’s quote above, about joy being possible only because of our awareness of death, feels wholly relevant. Eva said that if we had to go home now for whatever reason, she felt that this time had been worth it already. There is a constant brooding sense of the significance of this journey that causes some pain and discomfort whilst it simultaneously creates moments of love and joy. The joy and the sorrow are closely intertwined. We try to hold both lightly, knowing that predicting the future is a fool’s errand, but physical symptoms such as fatigue or bone pain can rather jolt us into the future. This continuum of the here and now with momentary excursions to months or years down the line is something we are becoming more used to, but it is tiresome nonetheless. There are hours and days where we are lulled into hopeful dreaming that this insidious disease will somehow burn itself out and fade into oblivion, and I think on some level we both do hope for some kind of weirdly good outcome. At our second camp, the owner, a special man in his 70s called Wazza, told us of his wife who died of breast cancer in in 1984 aged 36. Tanya, a full-time traveler whom we met at Wazza’s bush camp, told Eva of her mother’s death aged 51 from malignant melanoma, and her own experience of feeling uncertain of life when she reached the age of 52. There are constant reminders which are difficult to swallow.

Finch Hatton Gorge, QLD

Nevertheless, we hope that forest bathing and creek plunging and beach walking and sun worshiping and family immersion does wonders for Eva’s cellular pathways, boosts her immune system, and encourages an ongoing zest for life. It’s beautiful to be surrounded by all types of natural beauty and to feel like each one does something a little bit magical; soothing greens, cleansing crystal clear water, rich earth, majestic trees, soaking saltiness, and enlivening sun. It’s a reminder that whenever we do come back to normality and routine that this sense of vitality can always be present. We live in a coastal paradise with incredible beaches and verdant hinterlands, but still life becomes consumed with the confines of work and dates and speed and harried interactions. How can we automate this ingestion of and live fully in and aware of the slowness and steadiness of nature? Other things seem to fade in comparison, yet we are so addicted to being validated and affirmed and seen to be doing what is expected of us.

Eungella, QLD

Tara Brach talks a lot about pausing to become aware of the sensation in our bodies prior to reacting to something. I have plenty of opportunity to do this living in a camper with two small children, but usually I’ve crossed the finish line before even remembering to pause. It’s a scary but rewarding thing to do. What does it feel like in my body when I’m experiencing joy? Where does sorrow sit and how do I hold it? How does this anger arise and when can I become aware of it at the earliest opportunity? What is this sadness and how deep does it go? For some it feels like unhelpful navel gazing; but I wonder if this is because usually the pace of our lives doesn’t allow this degree of examination and interrogation of ourselves. How would our world – or even just our own personal relationships – be changed if we developed the habit of pausing and sitting with the most uncomfortable of feelings before they are expressed as words or actions? I think if we did, possibly we would see that our joy resides not so far from sorrow, and our anger not so far from love. They are separated by porous boundaries, and sometimes it takes quietness, or a great uprooting in life, to feel the movement between them, to acknowledge the depths of the fear of loss and the joy of having.

Booloumba Creek, QLD

Radical Acceptance

The last year has been a whirlwind. I think it’s only over the last month or two we feel like we’re emerging from the shock of Eva’s diagnosis with metastatic breast cancer about 12 months ago. We’ve found a new normal, to some degree, and have put down more roots and established ourselves. Some of you have been in touch, enquiring after Eva’s health and wondering how our family is doing. I’d love to blog again over the coming months, and feel perhaps more in a space to do so. In a little over a week we are setting off traveling for six months in a camper trailer. The aim is to have uninterrupted time as a family together, instead of squeezing this in between school runs, work, and living in this shadow of mortality. Follow us on Instagram at @smenelaws but hopefully I’ll blog here too.


Thanks for your love for our family, amidst a world where our experience is but a miniscule fraction of the vastness of our collective suffering. I just started reading Tara Brach’s Radical Acceptance where she says, ‘DH Lawrence decsribed our Western culture as being like a great uprooted tree with its roots in the air. “We are perishing for lack of fulfillment of our greater needs.” he wrote, “we are cut off from the great sources of our inward nourishment and renewal.” We come alive as we rediscover the truth of our goodness and our natural connectedness to all of life. Our “greater needs” are met in relating lovingly wth each otherm relating with full presence to each moment, relating to the beauty and pain that is within and around us. As Lawrence said, “We must plant ourselves again in the universe.”‘


I continue to share openly about our experience as there is somehow a truth to our “natural connectedness”. It’s easy to portray life as beautiful and easy and joyful; it’s meaningful to share the hard stuff as we all seek “fulfillment of our greater needs”, and one thing suffering can do is clarify those needs.

Busy Living

Busy living in the shadow of
Things known but unseen, silent
And achingly loud in all
Their implied darkness.

Busy living amongst the ruckus
Of children's dirty hands
Scratched feet, sun-kissed and sweaty,
Their tender, giant souls our teachers.

Busy living grounded here and now
By four hens, greenest garden, endless tablets
Cool pool, looming scans with brooding shadows, 
This constant undulation of the sacred and profane.

Busy living with sense-making and non-sense
Accepting, the unnavigable ride of odds and
Chances, trends and norms, while holding out for
Peace. 

Death: Biologically Challenging

To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.

 

– C.S. Lewis, The Four Loves

“She is a friend of mind. She gather me, man. The pieces I am, she gather them and give them back to me in all the right order. It’s good, you know, when you got a woman who is a friend of your mind.”

– Toni Morrison, Beloved

 

No one was around when it happened. There was no applause or congratulations. No one thanked her or praised her. No one noticed a thing. Like a leaf falling from a tree, she just let go.

There was no effort. There was no struggle. It wasn’t good and it wasn’t bad. It was what it was, and it is just that.

In the space of letting go, she let it all be. A small smile came over her face. A light breeze blew through her. And the sun and the moon shone forevermore.

– Rev. Safire Rose, She Let Go

 

‘Your cancer’s biologically challenging,’ she said. ‘It has survived dose-dense chemotherapy, aggressive surgery, and hormonal suppression. You’ve had good oestrogen-blocking medication, but you’ve still relapsed in less than a year, and yesterday’s bone scan is worse than July’s.’

This was about the sum of the recent meeting with a breast oncologist for a second opinion. She confirmed Eva’s feelings about her cancer; from the start, she had been unimpressed with the cancer’s response to chemotherapy. The initial breast mass had only reduced by about 30% in size after the initial brutal chemotherapy regime for advanced, large cancers.

The last week has felt surreal at times. In a sense, there is a paradoxical release of pressure. Eva’s primary oncologist kept referencing a patient whom she has with bone mets who has managed for about 10 years on a fairly conservative regime of hormonal therapy and bone protecting medication. That scenario was starting to feel incongruent with how Eva’s cancer presented, relapsed, and is now progressing, though. In a sense, we wondered what we had to do to keep Eva alive for this magical ten years when things are pointing resoundingly in another direction. And we tread the strange line of opinions about what is the optimal treatment regime: those who think her treatment is not aggressive enough and she should now be on chemotherapy already, and those who think that she should now be utilising one of ten or twenty diets which detoxify, alkalinise, macrofy, and heal the microbiome, among other things.

We discussed further with the oncologist. If the next treatment, ribociclib, works, the best case scenario is that it slows disease progression for 12 months or so. The main aim of that medication is to sensitise the cancer to the oestrogen-blocking medication, which until now has been pretty ineffective. If that doesn’t work, or when it does stop working, the next step is chemotherapy. When pushing her for a prognosis, she said that she thinks Eva will be alive in one year as she has not had any chemotherapy yet (since her metastatic diagnosis), but she ‘just can’t say’ about two years. So we’ve made some sort mental aim of two years, and anything else will be a bonus.

There feels such a tremendous pressure to display a type of positivity that does not consider death, or even the possibility of it. Considering death is one of the last major taboos, especially in our society which is averse to its possibility and the  view of death as the final defeat. Well-meaning people say, ‘Be strong’, ‘be positive’, ‘don’t think about the future; just think about today’. I’m not quite sure what the other options are; lying in bed weeping, not working, not caring for ourselves or our children? Is the consideration of death as a natural part of life a pessimistic acceptance? Would we tell an 8 year-old with leukaemia to ‘stay positive’, or suggest that his or her state of mind is perhaps the deal-breaker in whether they survive or not?

Throughout this trip (I can’t bring myself to write ‘journey’ again), it’s been immensely important to us to be completely honest with ourselves and one another about what the final outcome of this may be. To not consider this – to somehow think that a consideration of death could undo the effects of the current available treatment – to us seems inconsiderate, especially for our children. Of course death is scary and sad and inconceivable and seems absurdly unfair in Eva’s situation. It helps me, somehow, to consider the unfairness of millions of people’s lives each day. Unfairness and sadness and suffering are intrinsic to our human condition. Would we advise a slum resident in Mumbai that it’s merely their attitude that will determine whether they get out of there or not? And do we consider the unfairness of a mother who has lost multiple infants in a country where child mortality is still high? What about my friend who lost three children at once in a plane accident? Or another friend whose adult son died in horrendous circumstances in an industrial accident? Unfairness is not uncommon, and is not reserved for the Other.

Death and dying are abhorrent in our society. We’d rather talk about people’s sexual fetishes involving cold custard and mashed potatoes than about death, despite the 100% ubiquity of the latter. (I presume the former is a less common human experience.)

For us to live well as a family, and for Eva to maintain her pragmatic, life-affirming approach to her mortality, death needs to be part of the narrative. Of course we hope for this end point to be delayed as long as possible and will consider ways in which to achieve this; I don’t think there is much stronger than a mother’s desire to be with her children as long as possible and to spare them grief for as long as she can, whilst maintaining a quality of life that allows her to be present in a meaningful way. But to not allow this consideration and to frame death as He-Who-Must-Not-Be-Named feels somewhat unhelpful.

In stoic philosophy, the contemplation of death is encouraged. Marcus Aurelius says, ‘Death smiles at us all; all we can do is smile back.’ And, even more eloquently, ‘In short, know this: Human lives are brief and trivial. Yesterday a blob of semen; tomorrow embalming fluid, ash.’

Medieaval Christians practiced memento mori, the consideration and remembering of death to help live a more disciplined and ascetic life.

Some Buddhists observe maranasati, a meditation practice on death which helps to live today with urgency and mindfulness.

Is it something to do with our post-religious culture which does not value death as one of the rites of passage and, therefore, cannot discuss it openly? Some beautiful, well-meaning Christian friends have also focused on the post-death experience as being an impetus to think of God in a certain way today.

I wonder if we can become more conscious of death in a way that is removed from the overwhelming tragedy traditionally associated with it in our culture, or as the reason to cling to a rigid belief system whilst still alive? I wonder if we can accept it in a way that makes us more able to live fully and engaged and authentic in our day-to-day lives now? Since a young age I was brought up in a fundamentalist religious household, where death was both a promise of somewhere where everything would become better, but simultaneously potentially where you would burn for eternity should you not do the right thing. So I’ve spent many years considering how I will deal with death, both pre-emptively and posthumously. But this new, acute confrontation with it actually somehow helps me feel less alone to know that so many others have traveled this path, and that it will be my own to take one day – who knows, maybe unexpectedly or suddenly, much sooner than I could imagine? I have observed death as a doctor, in my family, and may experience it again as an observer much sooner than I had ever feared. Can I come to that place, like the poet above, to think that it isn’t good, it isn’t bad, it is what it is and it is just that? I doubt that will happen any time soon, but I love the sentiment.

 

20180913_163306994401629.jpg
Point Perry, north to Coolum Beach, Emu Mountain, and Noosa Heads

For now, we have a biologically challenging cancer in Eva’s body to deal with. We wish to goodness that we could go back to that pre-November 2016 innocence, where our biggest concern was getting our 8 month-old to sleep through the night. This is Eva’s lot for now, and I need to be present for her and our children in facing all potential scenarios and outcomes in the weeks, months and (hopefully many) years ahead. We need to accept the awful vulnerability of love which will end up in heartache and pain at some point. We need to simultaneously let go of all expectations, not grasping or fighting to mental and emotional exhaustion. It is a dreadfully beautiful experience of anticipatory grief because of how much we have to love now.

Light up, light up
As if you have a choice
Even if you cannot hear my voice
I’ll be right beside you dear
Louder, louder
And we’ll run for our lives
I can hardly speak I understand
Why you can’t raise your voice to say.

– Snow Patrol, Run

 

 

 

 

 

 

Breaking Open

If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world…

We must admit there will be music despite everything.
We stand at the prow again of a small ship
anchored late at night in the tiny port
looking over to the sleeping island: the waterfront
is three shuttered cafés and one naked light burning.
To hear the faint sound of oars in the silence as a rowboat
comes slowly out and then goes back is truly worth
all the years of sorrow that are to come.

Jack Gilbert, A Brief for the Defense

And so it came, much sooner than expected, a gradual crescendo of unsuspecting pain, dismissed possibilities slowly taking shape into real likelihoods, anxious thoughts tumbling onwards and upwards until, with one nervous phrase by the poor secretary, our fears were confirmed.

It’s been one year since Eva finished radiotherapy for her stage 3b breast cancer. It was preceded by a double mastectomy, and before that four months of dose-dense chemotherapy. In August last year, she had a relatively insignificant-seeming operation to remove her ovaries; a surgical ‘P.S.’ to reduce the likelihood of cancer recurrence, underlined by the bold fact of her new menopausal status. The final third of last year was a slog. For Eva, it was marked by this recovery of her body from the onslaught of treatment it had been subject to that year, with all the complex emotions and psychological chess moves that cancer ‘survivors’ have to make. We were both exhausted mentally and were only too happy to begin 2018 and to see Eva beginning to recover her strength. She did everything she was ‘supposed’to; she continued her healthy lifestyle and got back to doing exercise almost daily. Yoga, pilates, Strength After Breast Cancer weights program. The appointments continued as she sought to manage lymphoedema in the arm from which she’d had 29 lymph nodes removed.

But the niggling possibility never left us. Friends and family were pleased to see us move on from this unsightly, uncomfortable stage of life, into a future burgeoning with new hope and possibility. And so were we, but cautiously so. The facts were burned indelibly on our brains, though: a 36 year-old woman, with no family history of breast cancer, who had discovered a breast lump 17 months prior to her diagnosis of breast cancer, whose tumour mass was 8cm in diameter by time of diagnosis (lost amidst lumpy bumpy lactating breasts), with five lymph nodes positive for cancer, the surgeon’s manner throughout the treatment…the medic in me knew that these were never good prognostic indicators. Eva also presumed that, through her scanty knowledge of cancer prior to her own diagnosis, a recurrence was not unlikely. The ’70/30′ chance of non-recurrence cited by the oncologist was really best-case scenario. Thus far Eva had spectacularly missed every best-case scenario.

So we surfed the blood tests every few months. We’d have a frisson of nerves prior to a follow-up appointment with her surgeon or oncologist, then would feel elated at the ‘normal’ test results. And then the tumour marker, CA 15 3, started to go up. 13. 13. 14. 14. 15. 19. 19. But all below normal – less than 30. When Eva was first diagnosed, her CA 15 3 was 19. This imprecise, crude marker can be raised in all sorts of conditions – benign and malignant – but is also NOT raised in 40% of breast cancers. The doctor in me struggled; if I had a patient whose blood tests were rising but were still below normal, what would I do? Nothing – they are normal. But for a blood test which is a tumour marker, which is imprecise? This is harder.

At one point, the surgeon suggested that ‘if she was his wife’, he would get a PET scan just to monitor for recurrence. This would first require a CT of the chest to justify the decision-making to obtain a PET scan. Eva thought about it and discussed it with her oncologist: should she have extra investigations despite being asymptomatic on the basis of a rising but normal blood test? She decided not to. Had we discovered 3 months ago she had metastases it would have changed nothing, but robbed us of another 3 relatively peaceful months.

And they were. For the first time Eva started consciously imagining three and five and ten years ahead. She took part in new creative interests and explored new opportunities; drawing classes, art therapy, Zumba. She engaged in psychological therapy to navigate this post-cancer world. She thought about possibilities of further postgraduate training. And she was offered a full-time temporary teaching job at her old school, which she accepted.

The low back pain started like one of the many niggles she has experienced throughout treatment. It seemed likely that it was muscular strain as a result of the weights’ training she was doing in her Strength After Breast Cancer program. But it persisted, and more frequently she would walk around with a heat pack tied to her back. Five weeks ago she became very constipated and bloated, and the pain got worse. In a matter of days it was waking her up at night. Friends arrived from abroad; she is a GP and she too – like Eva’s own GP and surgeon – thought that this was likely muscular strain. Two days later I was about to walk out the house to go to work when, for some reason, I said to Eva that I was going to take the morning off and we were going to get a CT of her abdomen. I was more concerned about the sudden-onset bloating and constipation and wanted to rule out abdominal or pelvic pathology. I called the radiology department and booked an ultrasound and a CT. We attended and were told that we would be given the results if we returned two hours later.

We went and had lunch, and then returned. The secretary told us nervously that the radiologist had had to send someone to get Eva’s old CT images to compare with the new ones and that he would give the results to her surgeon directly.

We went round to the surgeon’s office in the hospital. He wasn’t there but his secretary listened to us and said that she would phone him when he was out of theatre and ensure that he spoke to the radiologist.

About thirty minutes later she phoned us. She said that the surgeon wanted to see us at 5.20pm the following day. Eva started panicking and crying. Her first thought was that this was a terrible time of day as it was just before the kids had dinner. She used my phone to phone back the secretary, but inadvertently dialled the surgeon’s personal mobile number which I had saved.

‘Some spots on your bones….I’m flying blind – I haven’t seen the scans myself….your spine….likely secondaries….’

A bone scan two days later confirmed the findings. Multiple vertebrae, ribs, head of left humerus, her skull, and throughout her anterior pelvic girdle. The painful spots were her pelvis – which progressed so rapidly that within the space of a week I had to be helping her sit up out of bed – her L4 vertebra, and the head of her left humerus (shoulder). She had two weeks of radiotherapy to these spots – one hour per day. During the second week one of the spots on one of her left ribs became painful, so she had a further session of high-dose radiotherapy to that – not before it fractured at the tumour site, resulting in a new, more excruciating pain.

So, this is it. Metastatic or secondary breast cancer. In her bones. An incurable disease. All treatment is to slow disease progression. A 22% 5-year survival rate. A 3-year median survival. No return to work – at this time – like she’d planned.

I’m writing this a month and a day after she received this news. We’ve moved from that first week’s state of shock into the next stage. This stage consists of every feeling under the sun, every single day. Hopefulness, peace, fear, disbelief, worry about the kids, the struggle with uncertainty. We have no idea how quickly things will progress. We have no idea whether we should be banning anything but the most positive thoughts of her being in the 1% that lives another ten years. We have no idea how much time we have together as a foursome. We are alternating between overwhelm and normality and emotional numbness. It’s a shitter.

Yet, somehow, we also feel like we are doing…okay. One of the positives of having been a catastrophiser in the past is that reality is rarely as bad as what one has catastrophised about. We are not falling apart. We are still able to laugh (a lot). We still have a weird sense of humour. Death jokes are not taboo. We somehow move in and out of imagining an extended period of time together, with a more rapid change in our foursome’s existence. There are periods of bleakness and fear and of loss and sadness, absolutely. But as Eva said in relation to considering the grief that is to come, ‘It’s easy to turn it into a Susan Sarandon movie in our heads with violins playing as we imagine our motherless children. But the fact is, they are likely to grow up to be fairly normal human beings.’

But we somehow relish the rational black-and-white of it: this is simply a shit hand of genes. Eva’s mum tracked down her dad in Italy, with whom she has had no contact for 33 years; he confirmed that there is no cancer in his family. So beautiful Eva, the offspring of two families with no cancer (except her maternal grandfather who had lung cancer in his 70s), is the one manifesting some epigenetic-mediated phenotype of irate oncogenes.

We know where the future is heading, but just not at what pace. But wait – isn’t that true for all of us? We are all heading in this direction, pace undetermined. Does that fact that we have more knowledge about Eva’s pace disconcert us more? Is it that the mystery of mortality is being thrust so rudely upon us that we have to deal with this so much more acutely?

All of us must choose, daily, to have the stubbornness to accept our gladness in the ruthless furnace of this world…We must admit there will be music despite everything.