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.

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The Breast Days: One Year On

There’s a way a disaster throws people into the present and gives them this supersaturated immediacy that also includes a deep sense of connection. It’s as though in some violent gift, you’ve been given a kind of spiritual awakening where you’re close to mortality in a way that makes you feel more alive. You’re deeply in the present and can let go of past and future and your personal narrative, in some ways. You have shared an experience with everyone around you, and you often find very direct but also metaphysical senses of connection to the people you suddenly have something in common with.

(Rebecca Solnit, on On Being with Krista Tippett)

Vulnerability is the birthplace of innovation, creativity and change…[it] sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.

(Brené Brown)

When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny.

(Paul Coelho)

 

Just over a year ago, Eva received her first dose of chemotherapy. Her next one was two weeks later on December 20th. Christmas Day 2016 was outstandingly depressing; she spent most of the day in a post-chemo fog, prostrate on the couch. I remember in the afternoon walking down to the veggie village with our 9-month old baby as our 4 year-old daughter stayed home and watched a movie on the sofa beside Eva. The heaviness was immense, exacerbated by the season. But even then, there was peace in nature. The grass was at its greenest before the long months of a Queensland summer took its toll. Our son crawled and bum-shuffled, fascinated by sticks and stones and the cool earth.

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Christmas 2016

So one year on, where are we along this road? Over the last months, Eva has re-read parts of the Breast Days of Our Life. She described it as providing a narrative and structure for her own personal experience of diagnosis and treatment of stage 3 breast cancer. The four months of chemotherapy are particularly hazy for her due to the cognitive effects of the cytotoxic medicine. She asked me recently if I had thought about writing anything on it again; I had, but also needed a break in the post-treatment period. We needed space to recreate and re-establish this new existence.

And life has gone on. Our daughter finished her first year of school, apparently unscathed by the experience of the last year (if her volume of speech and energy levels are anything to go by). She thrived and buzzed under the tutelage of her amazing prep teacher. She had mini-dramas with friends, grew stronger and more co-ordinated, and now is able to read her toddler brother his baby books.

Our baby is well and truly a toddler. He speaks first words in a mixture of Germlish (German and English). He propels himself headfirst into the swimming pool. He is doted upon by his older sister’s friends. He is engaging and smiling and affable. He shrieks with delight, and also with dismay when he is no longer allowed to play with the Christmas tree lights plug at the socket.

In the past month Eva has experienced more and more days where her energy levels remain equal and stable over the course of a day. She no longer feels like she must sleep as soon as Luca has a nap, for fear of not being able to make it to the end of the day without feeling like death. She continues to process her new body which has changed in so many ways. She has gone from a breastfeeding mother of an 8 month-old to a menopausal 37 year-old whose hair is no longer even the same anymore, who has had both breasts and her ovaries removed. She has pragmatically and bravely faced questions and potential issues around her new identity, and asked herself if it even changes anything about her identity? She is re-establishing a life which she had just settled in to one year ago – enjoying being a stay-at-home parent looking after a baby – to questioning whether she ‘should’ go back to work, or should she stay at home with a rambunctious toddler? Her feelings change but she has found some settledness in the thought of letting her body and mind continue to heal for the coming year at least without having to consider re-embarking on her professional journey again. The comorbidities of breast cancer survivors are now well-recognised in the literature; it is difficult and tiring to try and explain to people why she is not yet herself.

We attended the ‘Club Chemo’ Christmas party, organised by her medical oncologist for 300 of her patients and their families/support people. It was a good, if strange, experience. Eva appeared to be the youngest in the room, with perhaps a few more patients in their forties. But it was a good reminder of how life goes on and people continue to return to this Christmas party year after year.

But we hold within us the tension of two potential futures; one is where Eva lives to old-age and dies of a non-cancer related event and has nothing to consider again in relation to her experience of cancer. And the other option is of a recurrence, which, at present, is a terminal diagnosis. Metastatic breast cancer has no cure, although people can live for years with ongoing chemotherapy and radiotherapy to reduce the cancer burden.

I remember in one of the first blog posts I stated rather emphatically and probably aggressively that I did not want to view this as a heuristic or didactic process. I would never condone portraying any difficult experience as being there primarily as a reason to teach or instruct. However, there have been surprising and noticeable lessons gleaned over the past year. Here is a distilled version of them.

  1. Uncertainty is endemic to the human condition

So much of our life is concerned with trying to reduce uncertainty and increase security. (It’s interesting that I used ‘security’ as a synonym for ‘certainty’.) Starting with dealing with a crying baby, we are unnerved by not knowing exactly why they are crying. As we grow older, education is perceived as an investment in the future to make certain of financial stability and opportunity in adulthood. Financial stability is one of the hallmarks of how we define security and certainty; are we financially ‘secure’? Are we financially ‘independent’? Whole sectors are based on identifying variables which are a potential threats to this source of security. And it goes on and on. This year’s experience of cancer has thrown the uncertainty of multiple areas of our life into a harsh light of scrutiny: health, finances, employment, relationships (both within and outwith our family), mental wellbeing, and the unknown future.

But out of this uncertainty has come growth and opportunity: our relationship is better than it has ever been; we’ve experienced how resilient we are as individuals, a couple, and as a family; we’ve experienced overwhelming love and care and generosity from others; we’ve learned to ask for help from others; we’ve realised new areas of strengths, and have framed our weaknesses within a more balanced perspective; we have experienced how vulnerability has begotten courage, which has led to strength. We have learned to be less unnerved by the vicissitudes of life, and to accept that suffering is part of this beautiful, unpredictable, rich, and rewarding life. Our blessings are inestimably more than the trials of millions (billions?) of others.

2. Perhaps people are mostly kind, good, and caring?

The premise of our individualistic western societies is that we need to care for ourselves first, which then extends to our immediate families. Thereafter, it can be a free for all. We have outsourced care for extended family to other organisations and the state. The corporate sector is beginning to wake up to the fact that people are no longer driven purely by financial reward, celebrated success, or prestige. People require purpose and meaning in their occupations to maintain feelings of contentment and connection. One of the main ways of doing this is by identifying ways in which an organisation is helping others. Personal experience through our upbringing and later life experiences can darken this view. Religious beliefs in some circles are based on the premise that humans are ‘fallen’ and innately sinful and lacking goodness. One of our experiences, alluded to above, is re-experiencing the goodness of others. The presence of demonstrable expressions of love and care was a shocking reminder of how much I did NOT expect this from people. We feel irrevocably changed by others’ openness and thoughtfulness. Rebecca Solnit (above) describes this as ‘this supersaturated immediacy that also includes a deep sense of connection’, this ‘violent gift…that makes you feel more alive.’ We do feel more alive, more purposeful in our day-to-day existence. We’ve started learning self-compassion, seeing the uselessness of perfectionistic, fearful, driven tendencies. Imagine how we would change our worlds if we treated ourselves and others with the expectation of kindness, goodness, and altruism?

3. Vulnerability, strength, courage, and purpose are closely related

We tend to idolise overt displays of success and achievement. We ascribe characteristics of strength and courage to people who seem to have reached significant states of wealth, fame, or even ‘nobler’ pursuits, such as personal development or artistic endeavour. But we are slow to recognise the traits which stem from vulnerability – openness, transparency, genuineness. We tend to downplay that courage is not always comfortable, as Brené Brown says, and that vulnerability is the birthplace of innovation, creativity, and change.

It’s hard to encapsulate how the vulnerabilty we have felt and displayed this year has changed us and opened up new opportunities, because it is still an emerging and ongoing process. But it’s undeniable that our willingness to change, despite not feeling ready (when are we ever ready for disaster?), is endowing us with a greater sense of expectancy and excitement for the future, no matter what that may be. Like Paul Coehlo says, the challenge will not wait, and life does not look back.

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Fudging Our Way Onwards

Lay down
Your sweet and weary head
The night is falling
You have come to journey’s end
Sleep now
And dream of the ones who came before
They are calling
From across the distant shore

Into The West, Annie Lennox

 

Storming, enjoying, planning, loving, cautioning,
Backing and filling, appearing and disappearing,
I tread day and night such roads.

Leaves of Grass, Walt Whitman

Eva finished her final round of chemotherapy today. Eight rounds, each one a heavyweight, taking its toll on body and mind. Like each stage of this process, the end of this part leaves a trail of mixed emotions and feelings: relief, trepidation, ecstasy, anticipation, hope, doubt, and a hundred other undulating and unexpected experiences.

Just now I feel exhausted. The day was good. There was a feeling of celebration at reaching this point. I had some hours by myself whilst Eva was at chemo and spent some time at a water hole, jumping into it from a 6 metre-high cliff. I visited a yoga centre where I’m hoping to do yoga teacher training later in the year. I had lunch and a coffee by myself – a precious luxury, as any parent of young kids would know.

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Swimming hole, Wappa Falls

The house is quiet now. Both kids are in bed, and we can slow down. The tiredness is oozing out of us both in different ways. Eva’s body is starting to react to the strong concoction of medication. She remains fairly well for the first two days, but on days three to five she feels achy all over her body; she describes feeling like she is bruised all over and she waddles tentatively when she walks.

‘But this is the last one; it should be a positive thing! And why are you tired? You don’t even have cancer! And she looks so well. She looks amazing! You guys must be so thankful. She’s still so beautiful.’ And thoughts like this bounce around eternally and we strive to learn to be patient and kind to ourselves. We have learned enough over the last months that the tiredness and exhaustion comes in unexpected moments, and precipitated by events or situations which we would not have imagined to be anything of significance. There is the constant oscillation between stress and hope, tension and relief, presentness and the future. The constant attempt to maintain equilibrium and homeostasis is in itself an energy-draining process. Trying to not over-react to energetic, vivacious children is enough to drive many parents to distraction; this homeostasis maintenance is like balancing a teaspoon-full of uranium whilst walking over hot coals.

This is not a pity party. It is just life, and as ever we remain gratefully aware of how good we do have it. We still have delicious meals dropped off by friends. A cleaner provided to keep our house in order. Our children cared for in the best of hands when we have appointments. Excellent medical care with a likely positive outcome. People who love us and who express it in many ways.

When this all started off in November, or at least when we had gathered ourselves a bit after a couple of weeks, we vowed to give ourselves the space to experience all the highs and lows of the coming weeks, months, and years. We could not foresee what it would entail, but cognitively we were aware that if we tried to process this in a rigid, structured way, we would probably do ourselves a disservice.

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Tidying up the fuzz

In our society, and often in our vocations, our lives are set up to run on demand. Processes and protocols keep us contained and secure. Guidelines and rules are there to make sure that outcomes are predictable. Policies and operational frameworks try and break down the complexity of a production process, or an educational pathway, or a financial investment, or a patient’s ‘journey’ through the hospital.

And then life reminds you – there is no protocol for this shit. The neat policies and guidelines are inflexible and not fit for purpose when a fuck-off great road block hits. And this is when our resilience is tested; our ability to react to and respond to the changing environment around us.

We have both feared our lack of resilience in the past. It was actually a huge source of anxiety for us; we both started our adult lives with a deep terror that life was going to be too hard for us. Our deepest existential fear was – am I going to cope?

And we have actually repeatedly proven to ourselves in the past sixteen or seventeen years that we do have ‘what it takes’ to overcome a number of major experiential, psychological, and health issues. But when cancer landed in our laps, our reptilian brains sprung into immediate action. Our heightened awareness of threat and potential disaster was still present.

However, our reactions to this initial flood of stress hormones and old cognitive patterns have changed. One of the major things that we have learned and have practiced the last months is sitting with uncertainty. The first twenty-four hours were horrendous as we sat with the unknownness of Eva’s prognosis. We cried and struggled with feelings of fear and regret, incredulous at the seeming unfairness of Eva having to deal with this on top of already having dealt with a litany of challenging circumstances in life.

The lack of control when something like this happens is overwhelming…and to fight that, we realised, would be disastrous. On one hand one is encouraged to ‘fight cancer’ and be positive, and on the other hand people express, ‘Well, you just need to accept it and get on with it, don’t you?’ Both are true, although we were (are?) generally less comfortable with the martial, combative language as, for us, expending energy on aggressive acts or magic solution-finding research was not feasible.

Early on, once through the initial days of chaos, we identified our family’s stability and well-being as our primary aim. It wasn’t even getting Eva better from cancer; perhaps due to our backgrounds and our deeply-ingrained, if somewhat ameliorated, existential fears, we were aware that if there was stress and instability and lack of energy for this central, essential unit, Eva would be less able to use what energy she did have for this physical ‘fight’.

From setting this priority, certain decisions became easier: me taking time off work for my own mental health and to care for my family; unashamedly accepting offers of financial help from people; accepting help from friends and the community in looking after us in many practical ways; ensuring that we were engaging in supportive, positive relationships; prioritising the management of our own mental and physical health through eating well, drinking sensibly (on the whole; last Friday with the guys was a significant exception), exercising, maintaining spiritual and psychological equanimity through therapy, mindfulness, yoga, and engaging with nature.

In a sense, with this framework in place, the last months have run themselves. The medical treatment of cancer has been one of the few protocol-driven, controlled parts of this process. There’s nothing we could do to speed or help the process – nothing more than an otherwise very healthy, 36 year-old mother of two healthy children with no family history of breast cancer could have done to not get it in the first place. Maybe she should have eaten purple carrots, turmeric, and raw broccoli since birth to prevent this? Who knows.

The variables have been within ourselves, as described above, and within our family unit. Our major priorities have been watching our little girl go from kindy to school, and our baby start to walk, and now emerge into toddler-dom. We have thrived off their innate joy and energy, but like any parents with young children have been exasperated and tired and impatient and questioning whether we are too strict/lax/indeterminate, or a hundred other unnecessary, overly analytical questions. Actually, to be fair, we have probably learned to chill out in regards to our fear of being inadequate parents through this experience too. It’s good to learn to settle for the ‘good enough’ parenting award.

Events in treatment have easily destabilised us; when Eva became neutropenic and chemo was delayed for a week we again wrestled with the reprieve of a week’s break but the subsequent delay in the cycle that we were just establishing. When she went for an MRI and ultrasound of her breast last week – the first since a few days after her initial diagnosis – we were again surprised at how tense and brittle we both were, both imagining every scenario under the sun and being unexpectedly deflated that things were neither miraculously better or horrendously worse. It’s a funny old thing; you somehow seek for an emotional high or low to signal to you something – anything. Eva called me from the radiology centre in tears, complaining about the ‘fucking ridiculous gowns that don’t cover anything when they have to poke and manhandle your tits into these two holes [in the MRI] anyway’, and the poor technician whose hands were so shaky trying to inject dye into her vein it made Eva ask him to go and get someone else who was more confident, and lying there in the MRI for half an hour crying, with snot running out her nose but being unable to wipe it or even take a deep breath so as not to cause artefact in the images. The last straw was when she paid hundreds of dollars for the privilege of this experience and there was something wrong with the card machine at that point, which reduced her to tears again.

We were able to laugh afterwards, and in retrospect it’s quite amazing she has not had regular emotional meltdowns where she had a good scream or something. I, too,  find myself whispering ‘for fuck’s sake’ to myself over very minor inconveniences (e.g. spilling some milk, dropping the entire clothes pegs basket (that’s a fucking nightmare, actually)) much more than I ever did six months ago, and have perhaps screamed in the car when driving alone once or twice…but apart from that, our behaviour has not been ostensibly outrageous. (Moreso than usual, anyway.)

So, we’re breathing deeply for another ten days of post-chemo physiological boxing with a brutal opponent. Then we will have have just over three weeks until Eva undergoes a double mastectomy. And I suppose we will continue trying to do what we’ve been doing; holding space for one another; soaking up the love and kindness of others; sitting with and breathing through the uncertainty; and enjoying the beautiful life we have around us.

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The Discipline of Hope

I’ve got a PhD in Catastrophisation and Anxiety (with distinction). Prior to Eva being diagnosed with breast cancer, I had already – years ago – envisioned Eva dying; me dying and leaving Eva with not-yet-conceived kids; our not-yet-conceived kids dying; Eva dying and leaving me with not-yet-conceived kids; my best mate dying; me losing my ability to work and support my not-yet-conceived kids, etc etc. I could easily go on.

When we received Eva’s diagnosis, my well-primed anxiety response took flight. The morning after (I think) I was with both kids by myself as Eva tried to sleep again after a restless night. I remember feeding Luca while Mia played on the floor. And I remember trying to sing and smile at Luca whilst I fought what was essentially the beginning of a panic attack. I felt this image taking over my vision: trying to raise two kids alone, who missed their mother; feeling ill-equipped and scared; trying to make up all the parenting that they would miss in Eva’s absence.

But we don’t get to fall apart. This is Eva’s battle, primarily. I’m just the cavalry, bringing up the rear. It’s my job to support her and protect the most vulnerable and precious members of our family. It’s not within the traditional role of the western male (or most cultures’ concept of masculinity) to admit to being scared shitless and scared of not coping. But I guess we’ve all had it to one degree or another. How conscious or not we are of it, and how we deal with it, is key.

Hope needs to become a discipline these days. We cannot control our circumstances but there is some room to control our reactions to them. I could expend energy imagining planning a funeral. Or I could invest energy in imagining a fit, strong Eva in twelve months’ time, back to swimming with the mum’s squad, running around with the kids, getting ready to go on well-deserved holiday. And which image will give rise to the greater feeling of anxiety in me – or us, as this battle is as acute for Eva? Unpleasant feelings are still there – uncertainty, worry, tension, grief. Hopefully by learning to sit and acknowledge those feelings, I can then proactively choose to imagine a beautiful future, rather than be riddled with the anxiety of the potentially disastrous one.

This Emily Dickenson poem was in my head this week; it is oft quoted by one of dear friends, Megan, and true to form, a letter arrived from her for Eva a couple of days after:

Hope is the thing with feathers 

That perches in the soul 

And sings the tune without the words 

And never stops at all.