Know Thyself

You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.

Not till we are lost, in other words not till we have lost the world, do we begin to find ourselves, and realize where we are and the infinite extent of our relations.

Henry David Thoreau

The highest, most decisive experience is to be alone with one’s own self. You must be alone to find out what supports you, when you find that you can not support yourself. Only this experience can give you an indestructible foundation.

Carl Gustav Jung

There is something both stabilising and terrifying about knowing ourselves. It is confronting to face the limits of our strength or patience or generosity in a certain situation, as well as gratifying to find previously unearthed depths of resilience.

In cardiology, the contractility of the myocardium, or heart muscle, is demonstrated by the Frank-Starling mechanism. The ventricles (the two largest chambers in the heart which pump ‘old’ deoxygenated blood into the lungs, and ‘new’ oxygenated blood round the body) are very adept at responding to increased metabolic requirements. As we exercise or are dehydrated or fight an infection, our hearts work harder, pumping faster and with increased pressure. In the young and fit, the heart’s residual capacity to increase its output can be considerable. However, in certain states such as diseases of the heart muscle, increased systemic resistance (i.e. high blood pressure), or increased pulmonary pressures, the ability of the heart to keep pumping harder and faster starts to become compromised. Whereas the myocardium previously impressed with its ability to keep up with the body’s demands, it now starts to drop off – the downward trajectory of the Frank-Starling curve.

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Copied from https://www.studyblue.com/notes/note/n/cardio-step-1/deck/5257541

We all have an optimum point of operation and varying residual powers to increase our output in response to life’s demands. Applying for a new job, completing exams, raising children, getting over a broken relationship; these life stressors test our ability to rise to the challenge and increase our output for what is required in that circumstance. Some people have marathon runner’s hearts and the resting pulse rate of 40 only gets above 70 after a lot of stress. Others maybe have an underlying structural abnormality, or a defect in the heart wall which limits their ability to increase their metabolic demands in the face of stress. Likewise, some people have the biological make-up, which has flourished in a nurturing environment, to be able to operate effectively under certain levels of stress. On the other hand, those who have a genetic predisposition to mental illness, a personality or temperament, which does not tolerate stress well, and who may have been raised in an environment which has not fostered resilience, will not be as able to easily rise to the demands of common, if difficult life stressors.

What the shit am I saying? Why is a psychiatrist dredging up his undergraduate cardiac physiology?

I suppose I am diplomatically trying to say I feel like, over the last three weeks, I have tipped over the edge of optimum function and appear to be slipping down Starling’s curve. I’m feeling a bit flabby and puffy, and like my lungs are becoming soggy with some extracellular fluid which my heart is not optimally pumping out anymore. Perhaps a touch of heart failure; not yet cardiogenic shock.

Yes, stress, uncertainty, anxiety, tiredness are taking their toll. Much easier – but perhaps more dramatic? – to describe it as heart failure.¹

It’s two and a half weeks since we bid part of Eva’s body goodbye. The surgeon removed 29 lymph nodes from her right axilla; five of them were found to be affected by cancer. She’s been left with a beautifully tidy scar, recurrent collections of fluid (seroma) which need drained weekly, the beginning of cording (tightness and pain in the connective tissues in her right arm), and lots of pain. The pain is now much improving, but she will be unable to lift our hefty toddler for another couple of weeks to allow the wound to fully heal.

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In a sense, Eva’s bilateral mastectomy and the removal of the lymph nodes felt like some sort of climax in this whole palava. The chemotherapy was an arduous, life-sapping, undulating experience. The surgery posed itself as a definitive, life-changing, disease-ridding, body-redefining moment, which was infused with nerves, inevitability, hope, and anticipation. She, and I, were aware that the full psychological impact of the change in her body may not be apparent for a long period of time as the immediate concern is with recuperating from the post-operative period.

But what we did not foresee was the sudden decline into feeling stretched and stressed and anxious. It coincided with the arrival of a close family member of Eva’s, who has been very accommodating and helpful, and whom we very much appreciate having here. However, we were really rocked by how this changed the dynamics of our bubble which we had created for ourselves the last months to deal with everything. Our management strategy had been of slowing down, acceptance, making room, and alleviating what pressures we could. The introduction of someone else at this time, regardless of how helpful they are, changed this little world, and it is something that we both initially struggled to cope with. We became ratty and irritable with one another, hypersensitive and hyper-reactive. Funsies.

Rather than it being a reflection on anyone else, it appears to be a reflection on us. The security and ‘comfort’ we created for our family during this time was dependent on having firm boundaries and accepting external help openly and willingly. It has been unnerving and, I suppose, scary to allow someone else in to the midst of the little world to care for and be involved in looking after us.

So I feel I have decompensated somewhat. Decompensated is a perfect descriptor; in cardiology, decompensated heart failure is heart failure which has previously been stable and well-managed, but which is worsened in the acute setting of another insult (e.g. infection, ischaemic heart disease, etc); in psychiatry, decompensation refers to someone’s emotional and mental well-being deteriorating in the context of an external stressor (e.g. relationship break-down, perceived rejection, or substance use). I feel like my mental resources, and my stamina to exponentially increase my output, are plateauing and dipping.²

On Monday we met the medical oncologist (chemo doctor) who started Eva on tamoxifen, an oestrogen-blocking drug; hello menopause. On Tuesday, Eva saw her GP and practice nurse (for an hour, which involved a lot of crying and talking. Best. GP. Ever). In the afternoon we met the lymphoedema specialist OT, and then went to meet the surgeon who removed Eva’s dressing and drained lots of fluid from her chest. Eva cancelled an appointment yesterday as she was all appointmented out. In an hour we are going to meet the radiation oncologist (radiotherapy doctor) who will inform us about the next stage of treatment (five weeks of radiotherapy, five days per week).

In the interim I have accepted a new job working as a medical editor of a medical journal for three days per week from home, and I will return to clinical psychiatry for the other two days per week. I’ll start back there in about three weeks’ time.

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And in all of this there are deep existential experiences; obviously and foremost for Eva, but that is her business. Mine have evolved round defining my role as a carer in addition to being a husband and dad. Soon I will resume the role of doctor, and will learn a new role as an academic journal editor. These are the ‘surface’ demonstrations of what I do and who I am in relation to others.

On a deeper level, I have been vaguely aware of my dissipating patience and forbearance. There’s nothing like having an argument and being impatient with one’s recently surgically mutilated wife to make one feel like a bit of a bastard, or mimicking my daughter’s whining because IF I HEAR ONE MORE WHINE ABOUT BRUSHING HER HAIR BEFORE SCHOOL I WILL LOSE MY SHIT. (Postal address at the bottom for Father of the Year Award.)

So I need to acknowledge my limits. I need to give space to the other carer in our midst. I need to reach out for support so that I can be the supporter that I need to be. I need to take time for myself that I can give of my time to others. And this awareness can cause discomfort; a real, growing awareness of my own limits and tiredness.

I am knowing myself in ways that I didn’t ask for, and which are profound (to me). It’s my experience of my wife’s illness and its effects on her and our family. If it were quantifiable, it is ‘less’ than the suffering of millions – billions – of people around the world. But it is our suffering for the time being, and there is some solace in the effect of shared experience. We are all deeply, unchangingly, unanimously human. We are all idiots at times; we are all selfish and impatient and unkind and thoughtless. And it is our duty to know and recognise this. It is my job to figure out why I have reacted in an impatient, unkind manner; it is my choice as to whether I acknowledge my own limits and weakness, to make room for them, and find the help and support I need to be the husband or father I’ve committed to be. It’s my job to figure out when I am isolating and not investing in relationship with others because it is too much work, or too embarrassing, or vulnerability-inducing, and to ask myself, why?

Until we know ourselves it is difficult to help others wholeheartedly. Until we know ourselves – our drivers and passions, prejudices and leanings, strengths and weaknesses, and helpful and destructive patterns of thinking – until we have tolerated being alone with this knowledge, like Jung said, it is only then we can develop an indestructible foundation.

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¹Just to clarify, I do NOT have heart failure.

²Just to clarify, I have NOT (completely) psychologically decompensated.

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The Voices in Our Heads

I have lived with several Zen masters – all of them cats.

– Eckhart Tolle

The Guest House

 

This being human is a guest house.

Every day a new arrival.

 

A joy, a depression, a meanness

Some momentary awarness comes as an unexpected visitor.

 

Welcome and entertain them all!

Even if they’re a crowd of sorrows,

Who violently sweep your house

Empty of its furniture,

Still treat each guest honorably.

He may be clearing you out

For some new delight.

 

The dark thought, the shame, the malice,

Meet them at the door laughing,

And invite them in.

 

Be grateful for whoever comes,

Because each has been sent

As a guide from beyond.

– Rumi

 

 

 

Today is the first second Tuesday – if that makes sense – in four months when Eva has not required chemo. I said to her this evening, ‘That’s great. We’re not preparing ourselves for a week of shite.’ Not exactly Rumi.

Eva’s body is still battered by its effects, though. We spent five or six hours out of the house on Sunday, and she felt terrible for the next day or so. We are realising more the extent of this and what she can and cannot expect from her body.

 

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And our minds.  Our minds! This never-ending undulating coming and going of thoughts and feelings. The constant assessing of how do we feel? How does Eva feel? How are the kids doing? It would be easier to compartmentalise and cut oneself off from the depth and variety of feelings, but it is something we actively avoid doing. For some people, compartmentalising and suppressing difficult emotions can be a survival technique that allows continued functioning in day-to-day life. It is a live-or-die means of coping. I’ve definitely been a compartmentaliser at various times in my life, but in my personal experience it has usually ended up ultimately as an unhelpful process. I’ve learned that, with a now relatively healthy mental state and helpful coping mechanisms, it’s most useful to face discomfort head-on. This is not admirable bravery, but it is my current ‘survival technique’. For me, keeping unacknowledged fears of Eva’s mortality or the toll of this on our family or the implications for my career buried in a place where I try to pay them no heed, will raise its head in increased levels of stress, anxiety, and burnout. (Ad endum: this is a technique that does not work for people who are suffering from severe trauma or extreme personality disorders, where the experience of distressing feelings can lead to harmful and destructive behaviours. These should be addressed with an experienced practitioner.)

So how do we best deal with uncomfortable feelings, emotions, and to some extent, memories? Back in my day job I was confronted daily by people who were essentially dealing with high degrees of internal distress. Often people find it very difficult to distinguish what it is exactly that they are experiencing: fear, depression, hopelessness, anger, sadness, internalised self-hatred, regret, and confusion are probably amongst the commonest, but often two or more will co-exist. Being disengaged from reality, such as in psychosis or some types of trauma-related experiences, further worsen people’s ability to articulate what their internal experience is. And some people, for a raft of complex and fascinating reasons, simply deny that they are feeling anything.

Yesterday a lady who lives in the town where we live, who first introduced herself after having come across this blog, said to me that when her daughter-in-law was going through colorectal cancer, she and her son ‘did not have the words to express how they felt’ about what they were going through. This is a common theme when people experience difficult experiences; how do we translate our internal, complex, mish-mash, private, and confusing experience into words – a means of communication and labeling? I think we often feel overwhelmed and lost at the prospect of even trying to turn feelings into words; one is an intensely personal experience which is largely mediated by ill-defined sensations and physical impressions, whilst the other – language – is precise and concise and obeys various rules and conventions. Most of us find it difficult to work out what we’re feeling at the best of times, and some find it difficult to put the ‘right’ amount of weight on a feeling that they are experiencing (i.e. over-reacting or feeling overly affected by a particular emotion). How do we then neatly unpack it and label it and place it in an organised filing cabinet?

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One of the risks of not paying attention to feelings is that they are a potentially helpful product of complex neurobiological processes which originate in deep parts of the brain. Over millions of years, they have grown and evolved to develop into a sophisticated and nuanced warning system. Anger and sadness and hurt and surprise served us well in surviving predators and attacking foes and the elements of nature. Our lives nowadays are more complex; we are not (often) preoccupied with escaping sabre tooth tigers or a pillaging neighbouring tribe or sheltering outside from a cyclone. Our enemies are: excessive stress; lack of physical activity and stimulation; subtle and more devious forms of competition with competitors; complex social communication systems; unstable political leaders and systems; rumoured virtual enemies and persistent bombardment with horrific world news. These are our ‘normal’ stresses in the west. Others struggle with eking out a daily survival, financial ruin, and natural disasters. When you add in something like childhood abuse or dysfunctional parenting, or even a more recent event which results in a traumatised response, the deep regulatory systems of the brain are often hyper-aroused. If this happens during childhood and, to some degree, adolescence there is correspondingly poor development of parts of the prefrontal cortex – our decision-making and self-actualising centre – of the brain. Stress and abuse and disrupted relationship with a primary caregiver actually forms the way our brains grow and develop. In the same way that in later life smoking, atherosclerosis (hardening of the arteries), and hypertension have adverse effects on the blood supply to the brain and the brain changes in reaction, we see that the brain is a plastic and versatile organ which is changed both by things within the body and things outside.

So what do we do when the voices in our head are screaming ‘I don’t know what I feel’, or are frozen silent in terror, or are confused and anxious, going round and round in ruminations of all the unfortunate things that have happened and all the bad that potentially could happen?

 

We breathe.

 

Breathing is helpful on a lot of fronts and I recommend it heartily. When we breathe consciously slowly and deeply, we start regulating the most primeval part of our brain (the brain stem) which contains the neuronal bodies of the nerves enervating the basic rhythms of human life: heart rate and breathing rate. Deepening our breath also increases pressure in the chest, which further activates the part of our peripheral nervous system which is involved in relaxation and non-fight or flight response – the parasympathetic nervous system.

Now’s the scary part. When we are not rushing around and breathing fast and sweating and being tense and distracting ourselves and thinking – or saying – ‘shit shit shit’ all the time, we are even more confronted with this massive tumbling mass of clamouring sensations and voices. It’s so overwhelming and scary and can be too difficult for some people (without support and therapy and training) to handle by themselves. The overwhelming internal conflict that some people experience is thought to be the driver that leads to poorly understood behaviours such as deliberate self-harm (cutting, burning, intoxication, binge eating, purging, and, I think, also starvation in anorexia) and impulsive suicide. So these are not soft little clouds of worry I’m talking about here.

So we start breathing again, and coming back to our breath. When we feel pounding in our ears or sweat dripping or our minds being paralysed by thoughts of future horror – come back to the breath. It’s our most natural bodily rhythm which has been with us since seconds after arriving in the world and will be one of the last physiological things to happen before we leave it. That breath is our friend. Feel its coolness going in and its warmth going out. And just as the terror or rushing thoughts or feelings of weakness or ineptitude start poking up again….think about that breath.

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It sounds trite and simplistic but it is the best place to start when it comes to actually figuring out what our feelings are when we are in the midst of being overwhelmed by them. Only once there is a lower degree of activation and physiological arousal, which we sense by decreased heart rate, breathing, perspiration, and decreased levels of circulating stress hormones, does our brain enter a place where the ‘smart’ bit can actually engage with these complex sensations and cognitively work through some of the stuff that’s going on. Again, for someone with a significant history of trauma, abuse, or disrupted attachment, this process will be long and drawn-out and complicated due to what can be termed brain damage that has taken place. But the brain is plastic and can remould itself, which is great news.

So what else can alleviate this turbo boost that our brains tend to resort to when under stress? If it was as easy as breathing, surely everyone would be fine, would they not? There are a lot of things we can do, and they take time to learn. But for me, learning to sit with the scariest and biggest and most anxiety-provoking feelings has been a great lesson. Sitting on them, squeezing them into a suitcase and then dropping that into the ocean is ineffective; it pops back up to the surface hours or days or months or years later.

For me, simultaneously activating my body has also been very important. Many people talk about the benefits of sport to their mental health and overall sense of well-being. Any sport is great, and we should all do more; however, I think it’s easy to mistake the exhaustion of a hard gym session or a fast run for internal peace and quiet. It definitely releases some feel-good hormones, but it’s not necessarily done in a mindful way. In other words, the next time that those uncomfortable feelings arise and you can’t immediately start doing some chest presses or a 10km run, the patterns of reacting to those feelings will repeat themselves. Mindfully-practiced exercise like yoga (which can be done to get either an intense strength or aerobic workout if desired) combines a few great facets: there is concentration on the breath and the associated beneficial physiological changes that take place with that; there is acknowledgement that we are composed of a body and mind (that part which, for the sake of argument, experiences emotions and feelings), and some believe spirit too; it works to bring homeostasis by literally stretching the body and holding postures to a state of muscle fatigue whilst concentrating on breath and being aware of sensations going on inside us. This is what some people refer to as grounding – being aware of where our body is in space and time whilst simultaneously holding in our awareness the feelings which we are experiencing in that moment. It’s actually pretty tricky to practice breathing, focus on that breath, pay attention to the physical strain on your body, and worry at the same time! It is a bit magical or spiritual how it happens – I don’t know if there is a physiological basis for it – but when there is actual alignment of the body, and attention given to our mind and spirit (whatever that may be for you), there is a profound level of deactivation of our ‘shit shit shit’ centres in the brain. That’s my explanation, anyway.

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I know that over the last months that practicing yoga and mindfulness techniques have been super helpful for both Eva and I. There is a lot of misunderstanding of what both these things are, and I’d encourage you, if you struggle to figure out what you’re feeling and regulate your reactions to those, to investigate them both. And if you’re not interested in figuring out what you’re feeling, that poses an interesting question which I’ll invite you to explore on your therapist’s chaise longue one day.

 

 

 

 

What is resilience, and how do we develop it?

If I never felt these extraordinarily pervasive strains — of unrest or rest or happiness or discomfort — I should float down into acquiescence. Here is something to fight; and when I wake early I say to myself Fight, fight. If I could catch the feeling, I would; the feeling of the singing of the real world, as one is driven by loneliness and silence from the habitable world… Anything is possible. And this curious steed, life, is genuine. Does any of this convey what I want to say? But I have not really laid hands on the emptiness after all.

Virginia Woolf, A Writer’s Diary

It’s no secret that pain, grief, and loss can provide opportunities for growth. I firmly believe they are not ‘put there’ to teach us, however. I think that is a belief of wearied humans who seek to explain why ‘bad’ things happen to ‘good’ people. I am interested as to how we can engineer a difficult or sad or hurtful situation to create a positive outcome. We are familiar with the maxim, ‘what doesn’t kill you makes you stronger’, but we are also aware that that is not true for many people. It’s good to acknowledge that tragedy can break people, and if it doesn’t kill them, their lives are irreparably damaged by these events.

So what can allow some people to develop a positive reaction to pain, and why are some people unable to do this? I think the difference is resilience.

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The concept of resilience wallows somewhere between the fads of green smoothies, CrossFit, mindfulness, and feng shui. So what is it actually? Among a number of definitions, this is one by Dr Ann Masten, a clinical psychologist and Regents Professor at the Institute of Child Development at the University of Minnesota:

‘Resilience refers to the capacity of a dynamic system to adapt successfully to disturbances that threaten the viability, the function, or the development of that system…I think it is also the kind of definition you can use across system levels, from a molecular level to the levels of human behavior in family, community or even societal contexts.’

During the last two months since Eva’s diagnosis with breast cancer, we have reflected a lot on whether we are ‘coping’ or not. Of course, coping is relative, and can be judged in many different areas. For us, our main areas of concern have been our own mental health, our relationship with each other, and our parenting of two small children.

And there have been some really dark days of feeling like we are not coping, or will not be able to cope, or are ‘failing’ to cope; and then there are other days we feel like frauds and feel like we should not be able to laugh or go out for breakfast or do stupid dances in the living room, because you shouldn’t do stupid dances or eat eggs benedict if you have cancer. You should be sad. Which makes you feel like you’re not coping. Etc etc.

Last week was particularly tough for us. Eva’s chemotherapy had to be cancelled because one of her subtypes of white blood cells, which are responsible for defending the body against acute infection, were dangerously low due to the chemotherapy’s effect on her bone marrow. We didn’t find out until we were at the hospital and Eva was sitting in the chair about to have her intravenous line inserted for the infusion. When the nurse threw her head on to the desk and said ‘oh no’ loudly (always an encouraging sign when a health professional does that, and which I’m sure I have done myself), we felt slightly unnerved.

We left the hospital with instructions to repeat Eva’s bloods in a week to see if they had normalised sufficiently to carry on with her treatment. Eva was in tears, and I joined her when a lovely old lady came up to us and gave us some encouraging words about getting through this, telling me I needed to be strong for Eva (as my chin wobbled and eyes sweated and I looked at the fascinating sign on the toilet door), which again reminded us that people are gorgeous.

The week was a mixture of a reprieve from the harrowing effects of chemo on Eva’s body, and the subsequent G-CSF (bone marrow booster) injections which make her feel like death warmed up. However, we fell into this limbo of waiting for the next stage of treatment, having been prepared for her last round of this type of chemo, and thereby having completed half her chemotherapy. Now, it was a waiting game. With the added excitement of trying to avoid any infection which her body would have minimal resources to be able to fight. We both fell into pretty low moods: deflated, tired, anxious, irritated, and general pissiness at the state of things.

But…we are still here. We still were able to engage in our daughter’s first day at school today. We are geared-up for recommencing chemotherapy tomorrow (neutrophils 3.47, thank you very much). We have made the decision that I will remain off work until Eva has finished treatment (kidneys for sale over on eBay, under the advert for mediocre male escort with odd accent available for $2.99/hr anywhere in Australia if Greyhound bus fares are included).

And life goes on.

I think there is nothing remarkable about how we are managing. My over-riding feeling about how I’m coping is one of ‘sounds reasonably together when he writes, but could do better; hides feelings of imminent mental breakdown due to some weird male pride and inability to articulate thoughts and feelings verbally.’

But here are things which are helping us to ‘adapt successfully to disturbances that threaten the viability, the function, or the development of that system’ – or build resilience, for short:

  1. Connection with actual human beings (in real life, not just WhatsFaceInstaTwittaLinkWeirdosAnnonymous)

And this human connection is TOUGH. It takes effort – effort by others (and thank God they’re making it) and effort by us. It is energy-draining and mentally taxing to try and communicate about how we are really doing, trying not to sound like a broken record or a wet lettuce. Not wanting others to feel uncomfortable by offering platitudes or not knowing what to say. Not wanting others to feel stuck or like they can’t say the right thing. Trying not to say platitudes ourselves, or say stupid things that we don’t actually think or feel.

But when we do…it is good. Eva has been better at this than I, but it is particularly tough for her during chemo weeks where communicating at all is an effort. I have made the decision to talk to someone professionally to help me process things a bit better, as well as make more of an effort to engage with friends face-to-face, or at least Skype-to-Skype. I also went out for a few drinks with a bunch of great guys on Saturday night for the first time in forever and a day, and I was surprised at how just having a laugh and making jokes about ways to confuse your Fitbit made me feel a whole lot better.

So, it’s psychology 101, but we need relationships to build resilience. Plugging on by your self, no matter how busy you are or how undeserving you feel of someone else’s time or ability to withstand your uncomfortable feelings – will not be helpful in ‘adapting successfully to the disturbance that threatens your viability’ (I think that could be a catchy title for a book on resilience aimed at men – ‘Adapt Successfully to the Disturbance that Threatens Your Viability!’, as opposed to ‘Making Your Inner Child More Resilient’).

2. Relaxing

It’s difficult to relax when you have cancer, treatment is beating the shit out of you, you have an oblivious 10 month-old, a dynamite-fueled 5 year-old, and you are trying to manage every-day life as well – which in and of itself is challenging enough. In my case it has included making decisions about work, how to make it viable to stay off my day job for some more months, how to get my daughter ready for school, how to make sure Eva feels as supported as possible and gets time to herself and does something nice now and again and gets some time for gentle exercise, and ensuring that I get some exercise so I don’t have a stroke in ten years’ time (yes, still catastrophising and imagining ten year-old Luca and 15 year-old Mia looking after their terminally-ill mother and hemiplegic, dysphasic father) and don’t melt in a ball of un-exorcised muscular tension and mental stress.

So relaxing, huh? Practical ways for us have been

  • yoga (thank you, thank you, thank you, India, for letting us bastardise and pervert this beautiful practice so I can do it online in my living room)
  • beach walks and swims (only possible in certain parts of the world; likely to cause greater stress in Scotland)
  • good food (eternally grateful for ongoing supply of cooked meals from incredible friends and community members, some of whom we’ve never even met)
  • nature (get your feet in some sand or mud or wet grass, and stare at the trees and smell your herbs – not THOSE herbs…well, actually… – and get hot or cold or wet and get away from where you are usually);
  • massage (check out Graeme or Geraldine’s magic hands at http://www.pureprana.com.au/ if you’re on the Sunshine Coast, also great for yoga. I’ve never once regretted one dollar spent there);
  • reading (an actual book, with pages, that you can hold in your hands and everything)
  • exercise (I bought some gymnastic rings just before Christmas as I could see getting out of the house to do exercise was going to be tough. Think of a walrus doing pull-ups and you’ll get a good idea of my current ability.)

There are lots of other ways, but you ain’t going to be resilient if you don’t build in relaxation.

3. Mindfulness and Meditation

Okay, mindfulness is about as clear as resilience which is about as clear as what Kim Kardashian does for a living (I am honestly not joking when I say I have NO idea who that lady is; all I know is she balances champagne glasses on her buttocks).

Mindfulness is NOT emptying your mind. Mindfulness is NOT an inactive and passive state of avoidance. Mindfulness is NOT relaxation. Mindfulness is NOT mindlessly colouring in mandalas (but it could be mindfully colouring in a mandala, being aware of the colours and hues, the feeling of the pencil on the paper, the response that you’re feeling to creating something beautiful).

Mindfulness is:

  • being aware of your thoughts – how often does someone ask you what you’re thinking about and you don’t know because it’s some weird and wonderful array of unconnected events which you can’t even keep a track of for three seconds after? Are you thinking about what you said yesterday to your boss? Are you wondering about what the scan will show? Can you not believe what your boyfriend said to you? Are you incredulous that that 98 year-old lady cut you off at the roundabout? Be aware of those thoughts, and let them pass through your mind without getting caught up in them. Don’t judge them as good or bad, as you then waste energy in an arbitrary, subjective weighing process. Thoughts are just thoughts; they have no power until you give them power.
  • being aware of your feelings – I used to have to use my wife to tell me what I feel. Which was usually at the end of a long, drawn-out argument where she had initially asked me why I was so grumpy, and I refused to believe that I was grumpy, until she talked me through why I was perhaps angry or scared or disappointed, etc etc, which I refused to acknowledge, until it was blindingly obvious even to me that I was grumpy because I was angry, scared, and disappointed after three hours of arguing with this fiercely intelligent lady. In the absence of a sensitive partner, start by giving some names to some of the feelings that you feel. Alexythymia (an inability to feel anything) is a pathological state which needs to be addressed and explored by a doctor, but an inability to name and identify feelings is very common. If you find it hard to identify what is anger or fear or irritation or sadness, give the sensation you are experiencing some other name that you can relate to. Even call them after animals and describe what they’re doing, e.g. ‘my tiger is prowling’, or ‘my giraffe is falling over’, or ‘my possum is hiding’. (We could make lots of humorous inferences from these, but I am far too mature for that.)
  • being aware of what is going on in your body – is your head tight? Is your stomach churning? Are your shoulders tense? Is your back uncomfortable? Are your hands tingling? Be aware of what makes these sensations better or worse, and ‘make room’ for them. We naturally react to perceived negative feelings in our body as a sign of impending illness or pain. This is obviously very helpful in many circumstances (e.g. central chest pain radiating to your neck and left arm with associated nausea and clamminess – phone 000/999/911, and then be mindful of these symptoms in the ambulance), but when we are already stressed, anxious, sleep-deprived, or it is on a background of years of difficulty identifying feelings, physical sensations can very often be related to our psychological state.
  • be aware of your senses – what can you hear? Where is the pressure on your body, and from what? Do you have a lingering taste in your mouth? Is there a faint smell of something – either pleasant or unpleasant (this is why yogis use essential oils; they eat so many lentils and legumes)? If your eyes are open, observe the space around you and ground yourself by naming five common objects – this is very useful if anyone has severe anxiety, or even panic attacks (which should be discussed with a GP or qualified mental health professional, not treated just by reading a cancer blog).
  • and accepting your thoughts, feelings, physical sensations, and sensory observations with a non-judgemental and inquisitive mind – which is what I am particularly shit at. Damn it. But seriously, this is the hard part of mindfulness; paying attention to our internal state without judging it. We have been taught and have evolved to judge certain sensations and thoughts and feelings as inherently bad or evil or dangerous. This is not a philosophical treatise on morality, but a description of how our psyche views our internal experience of the world. It is more useful and interesting to notice, ‘I seem to be really concerned with what my boyfriend said to me; but I am going to let it go’; ‘I am spending a lot of energy on imagining the scan coming back with a horrible result; I am going to let that go’; ‘I am aware my stomach has been churning for the past few days; I am not going to be scared by this but will acknowledge it could very well be a physiological reaction to the anxiety that I feel about this upcoming scan, which I am deciding to let come and go through my mind.’

It may sound like you need to be the Dalai Lama to achieve this, but you can learn it in some easy steps, and improve your ability over months. It is important to note, however, that there are some concrete things which mean some people have been unable to develop reasonable levels of resilience, and may struggle to learn and utilise resilience-building practices. These include:

  • Substance misuse
  • Mental illness
  • Childhood adversity (including poverty, abuse – of any kind, exposure to domestic violence and substance abuse, and poor relationship (disrupted attachment) with a primary caregiver)
  • Trauma
  • Chronic physical ill-health

These should be discussed and treated by an appropriately qualified person or team to help the individual improve their chance of developing resilience.

Kind of a potted overview of resilience.

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*Featured image property of my wonderful friend and excellent photographer, and a man of great resilience, Andy Rudman.

Life is Now

“Rabbits (says Mr. Lockley) are like human beings in many ways. One of these is certainly their staunch ability to withstand disaster and to let the stream of their life carry them along, past reaches of terror and loss. They have a certain quality which it would not be accurate to describe as callousness or indifference. It is, rather, a blessedly circumscribed imagination and an intuitive feeling that Life is Now. A foraging wild creature, intent above all upon survival, is as strong as the grass.”

Watership Down, Richard Adams (9/5/20-27/12/16)

Eva’s half way through her second round of chemotherapy now. On the whole, the side effects were not as severe during the chemo week, which is likely due to a change in the bone marrow stimulating injection which the oncologist thought she may have had a delayed hypersensitivity reaction to after round one. We changed to a short-acting variant which I gave her once a day for five days after round two. This reduced the vertigo which was so debilitating during the previous round, and the scary experience of the feeling of face-swelling and bony facial pain. The nausea, loss of appetite, tiredness, and general lethargy continue, and the tiredness is worse now in the post-chemo week than it was first time around. She now needs to sleep for a couple of hours each afternoon, whereas in week two of the first round she managed days without a sleep.

But more insidious, difficult experiences of cancer have been raising their head. They’re complex and convoluted, much more so than we would have expected. Again, this is me trying to process what Eva’s going through, and any reference to what people have said is not a criticism of any one individual. It is a reflection of how we struggle to deal with the situation, as do other people. There is no finger pointed at others, as we also try and give ourselves space to figure out how to ‘do’ this.

Eva has lost most of her hair now. I think she looks beautiful, and Eva is not particularly hung-up about her appearance. She feels more comfortable not covering her head at present as she does not want to feel like she has something to hide, or she is covering her head to ease other’s discomfort at her appearance. She also does not want – at this stage – to be faffing around with scarves, trying to create a turban in the heat and humidity when we are trying to get out the house with two kids in tow. This lack of head-covering has resulted in some humorous interactions:

A: ‘Have you gone Hare Krishna?’

Eva: ‘No, I’ve gone chemo’

B: ‘How often do you have to get that done? Is it a one all over?’

Eva: ‘No, it’s chemo all over.’

C: [On meeting this stranger for the first time, who had been told she had breast cancer] ‘Are you coping? You are. Good, good.’

Eva: [half shrugged shoulders in response to the answer which person provided for her]

Well, humorous on one hand, but arduous on the other. It was a struggle to identify what one should or could feel when another woman tells her that it was ‘liberating’ when she shaved her hair off (when she was much younger, of her own volition). Yes, when Eva had her short hairstyle for one week she did enjoy the ‘freedom’ of it. Now it is a mark of not even the underlying disease process, but the treatment for this disease process. It is hard to always ignore the sideways glances from people – who mean no ill and are doing it almost automatically. It is hard to know what to do or say or feel when virtual strangers tell you that you’re beautiful, when in a way, you don’t really care if you’re beautiful or not; you just don’t want to be doing this life-changing treatment, at all, getting your boob chopped off, your ovaries wheeked out, and missing out on your baby’s first Christmas and, in some ways, his last months of baby-dom.

This leads to another internal conflict. Eva has to submit herself to an unpleasant and energy-sapping treatment every two weeks for an illness which she had not yet felt any negative effect from. This is a psychological struggle in some ways; of her own volition, she is entering this four-month stage of near hibernation where she has what is colloquially known as ‘chemo brain’, where she feels (much more) exhausted by two young children than usual, where being out of the house for a couple of hours results in a massive physical drain. She wants to enjoy life, but the energy to do so is so tightly allotted, that it’s a real consideration as to how she spends it. The oncologist describes it as the human body’s extreme inefficiency in its conversion of chemical energy into what we can use. She describes an elite athlete as being someone whose body runs at about 20% efficiency (the ability to exchange stored energy into a usable substrate). We mere mortals shuffle along, and can be knocked off our feet by a day or two of gastro or a strong viral respiratory infection. Chemo is like that for four months, to a greater degree, and it worsens over time. Eva’s body is easily exhausted. This takes a lot of getting used to for her who ran a very tight ship in our household and with our kids. And she struggles with the pseudo-guilt of leaving me to manage the children and other day-to-day chores of the house, and looking after her to some degree. I hope it is a good lesson for her; I suppose this is a benefit of having a partner or spouse – there is someone there whose job and pleasure it is to care for you and your home and your children when you are not able to. But it is a difficult change in role for her.

On a more relational level, she finds it difficult to relate to other people in a way that is comfortable for her all the time (which is admittedly impossible, but also something you probably just want when you feel like shit for weeks on end. Small talk and platitudes are about as helpful as a hairbrush to her just now). On one hand she craves human connection and understanding and communication; but on the other hand she is so tired at times that it feels too much of an effort to do so. She struggles to listen to others in certain circumstances due to ‘chemo brain’; it feels difficult to follow conversations, especially when several people are involved. She also – I think very understandably – finds it difficult to listen to what other people are struggling with in life. She is very much cognitively aware that others’ lives and struggles and difficulties continue despite anything that she might be going through, but she does simply feel too empty (at present – this may change over time) to listen to a lengthy explanation of another’s problem. This raises feelings of guilt and inadequacy – both common feelings at present – which in themselves take energy to challenge and rid one’s self of.

(Ad endum: I discussed this Eva at morning tea, and we concluded that this was not quite an accurate depiction. I’m acutely aware that this is my interpretation of what Eva tells me and from how I know her, but of course I will not always be able to accurately translate that to the written form. She is very brave (and trusting) in not censoring or editing what I write, which is often about her reactions and thoughts. So it’s more accurate to say that Eva loves hearing others’ stories when told with genuineness and self-insight and honesty. People who have done this have been an encouragement to her throughout the last weeks. What she struggles with is when others present her with worries or concerns which are an expression of their own anxiety. She finds this difficult, at present, because with chemo brain and her own life-changing illness, she is not cognitively able to engage with someone to help them process their own concerns at the level which she would usually. SM.)

On a more existential level, she feels simultaneously a pressure and a hope when she hears of other ‘survivors’ who found their vocation or calling or passion in life once through the other end of cancer. At present it feels enough to get through a day where she can have some pleasant interactions with a baby and a four year-old energy-bomb, eat enough, and try and get out the house. Never mind become a life coach or personal trainer or motivational speaker or write the next great Australian novel as a dynamic cancer-survivor-to-be. She’d like to just be able to play with her kids without feeling wiped out and frustrated and impatient.

Without delving into personal details, there is also a sense at times of, how much suffering is enough? These are not words that Eva has used, and are probably more a projection of my own when I look at Eva’s life. There are a litany of things which have happened in which make me think, fuck, give her a break. This is potentially rather simplistic and perhaps self-pitying and introverted. But really, what’s the play here? What is this achieving?

So today Eva had most of the day by herself to try and process some of what’s been going on. The last four and half weeks have been such a non-stop onslaught of information and new experiences and future decision-consideration, she has not even read the basic leaflets about breast cancer which she was given. She has not been able to write and work out her own thoughts and feelings. Thankfully, she has found this blog useful as it has been to her what I hoped it would be: someone who knows her well being able to try and order and express and organise this insane experience into some sort of coherent narrative when her usually razor-like brain has been too dulled and drained and overwhelmed to be able to have the space and time to do that herself. One of the nicest things she has said to me was that ‘it feels like [I am] holding a space for her’ with this blog.

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And none of this detracts from the things which we are grateful and thankful for: our friends and family who continue to convey their love and support; our two healthy, vivacious children; our wonderful health system; my understanding employer; our general comfort and safety and privilege in which we live.

It’s an imperfect situation, with us trying to muddle our way through the cascade of emotions and feelings. We struggle with ongoing anxiety which is a challenge to being mindful and present. We are communicating with so many loved ones, which again can disrupt our attempts to be present in the here and now. We are trying to parent like we want to with the normal challenges that come with having two young children. We don’t expect perfection from ourselves, but setting our expectations at the ‘right’ height is a never-ending game, changing from hour to hour. And a lesson we have been trying to learn in other areas of our lives over the last years is to do nothing out of fear: not to be reactive and controlling because of a real or imagined perceived threat. It comes back to sitting with our own discomfort and pain, the anxiety and worry, and being big enough for it. Being big enough to love children and one another as we wish in it. Being big enough to connect with others. Being big enough to live out that Life is Now.

Enid Blyton and the Surgeon

After the CT scan of Eva’s chest, abdomen and pelvis, the radiologist invited us in so he could talk us through the scan. I am becoming more aware of the advantages and disadvantages of being a doctor in this situation; this was a privilege for which I am very thankful – that we did not have to wait for a scan result to be emailed to a GP and for us to wait another few days to receive it.

We walked along the corridor, Luca sitting like a beatific Buddha on my arm, surveying the devoted uniformed radiology staff who were besotted with him. We sat down in front of the bank of screens. The radiologist introduced himself. Again, the tingling and nausea were contrasted with the silent emptiness in the depths of my abdomen; anxiety-screaming anticipation crashing into the dense darkness of unknowningness.

He spoke to us kindly for about 20-30 seconds. I have no recollection of what he said until he said, ‘the scans are fine, by the way.’

I let out some sort of groan of relief and threw my head back. I felt like I sort of collapsed a little, like I had only been maintained by muscular tension for the past days. I squeezed Luca on my lap. Eva seemed less affected by this reassurance than I did, though.

On reflection, I can see two things: firstly was how our agenda as the patient (and patient’s partner) differed from the doctor. I am immensely grateful to him for taking the time to bring us through and talk to us. But our glaring question was, what are we going to do for our family, and in particular Mia and Luca, if Eva has only a few months to live? His was more academic in that he wanted to reassure us by giving us a brief, well-expressed tour through Eva’s radiographic body.

Secondly, the difference in my and Eva’s reaction. As I said previously, I had catastrophised about the horrific CT reports I have seen. Even as he reassuringly pointed out groups of lymph nodes, the architecture of the lungs, the vasculature of the liver, the little pyramid of the adrenal gland on top of the kidneys – I waited with bated breath to see if he would stop or hesitate, seeing some oedema (swelling) or focal lesion that he had perhaps missed on first passing. My limited knowledge of oncology told me that if there was something on the other side of the diaphragm, it was game over. At least, that’s how I felt.

In this journey, I’m going to be straddling these lines: the husband of the patient, not the patient; the husband of the patient who happens to be a doctor, not the doctor. This disease is hers and she is bearing its full brute force. On one hand I’m an observer and external. On the other I am inextricably linked on deep levels, compounded by love and empathy and deep knowledge of this suffering person, and biologically as co-carer for our genetic offspring.

We left with somewhat lighter hearts, and the mood at home was definitely  easier that evening. We laughed with my brother-in-law and his wife. Eva even pulled the cancer card on me: ‘can you close the bedroom door? I’ve got cancer.’ This is the humour that will get us through.

The following day we turned up at the hospital to meet the surgeon. I had received a text from him that morning: ‘Hi Simon, I have to go to theatre for a few hours. Could we make the appointment for 10am. Sorry. I will leave the room open. Please come in and take a seat.’

John (not his real name) poked his head round the door. He was tall, and wore dark blue scrubs and pointed black leather biker boots. He was elderly (his medical certificate hanging on the wall said he graduated in 1967 which must place him in his early 70s), and he carried himself in a relaxed way. His eyes were bright behind silver glasses, and he looked tall and strong and was still a handsome man. He introduced himself, and then headed straight for Luca and spent a considerable amount of time with him first. This seems to be a recurring pattern at appointments thus far.

Over the next hour and a quarter, John was everything one could hope for in a surgeon. He was kind and thoughtful, a great listener, relaxed and knowledgeable. He was a very straight-talker, but philosophical and humble. He explained everything to Eva as often as she wanted, and in different ways. He drew pictures and timelines and scales. He examined her, and then looked through the initial ultrasound and mammograms with us. He walked around and engaged with our baby, and paid me no heed as I changed aromatic nappies on the floor. And what sold it was that he revealed some of himself to us.

‘I came back to Australia from a mid-life crisis at a breast and endocrine unit in the UK, and I preached breast conservation. And it pains me to advise a beautiful young woman like you, that you will need to lose your breast. There are multiple masses, and there is no way we can save anything. I don’t take this lightly, but if you were my daughter, this is what I would advise you. My daughter was in her forties when she got breast cancer, and she told me she wanted both breasts removed immediately. I told her to slow down and think about this. But I’m sorry, you need a total mastectomy.’

I had asked Eva on the way there how she felt about having a mastectomy (which we both fully expected already). She replied at this time she didn’t care, or about losing her hair with chemo. She knows that these feelings may change.

He hugged Eva and shook my hand. We came to the awkward moment where Eva and I had to lay our cards on the table about our recent downgrade in health insurance (essentially nil), and our inability to be able to cover many if any added health costs. John waved his hand.

‘I’ve had three wives, so I’m broke too. But it’s our duty to your family as part of the medical fraternity, and to a beautiful family who is experiencing this unfair tragedy, to treat you here. I’ll do you at the end of my private list, and you’ll be here as my patient on the public ward. That’s if you want me looking after you, that is.’

As a doctor in the public health system I have inadvertently held some prejudices towards the private sector. We had said from day one that we would be keen to be treated in the public system; it’s a known entity, ad removes some of the choice which in this case we found overwhelming. The last thing we wanted to do was to speak to lots of people about who is the ‘best’ surgeon. It reminded me of something I already knew: in the West, no matter in which country we live, the access to public healthcare is exemplary (with one glaring exception, perhaps). We’re privileged with the access to medical education and training, the centres of research, and the safety net for those who are uninsured.

But here was a man whose kindness and concern appeared to be the motivating factor for his practice. He was seeing us on a Saturday morning. We knew that the next time we could have been seen was 9pm on a Tuesday night.

I had already discussed some practicalities with one oncology counterpart at the local hospital where I am based. He too gave willingly of his time, talking me through the process and reassuring me.

Ultimately, where we are treated and by what system is completely secondary. We have been blessed that we have met a beautiful person who has invested in us personally already, who happens to work at a smaller, more easily accessible hospital close to our home.

Last night I continued reading The Enchanted Wood by Enid Blyton with Mia before bed. These words struck me:

Suddenly one of the people of the Rocking Land gave a frightened shout and clutched hold of a nearby tree. A strange wind blew with a low, musical sound. 

Now what’s going on?’ cried Moon-Face.

‘Get hold of a tree! Get hold of a tree! shouted the people round about. ‘When the wind makes that sound it means the whole land is going to tip up sideways and try to roll everyone off. Your only hope is to catch hold of a tree!’

Sure enough, the land was tipping up – not in bits and pieces as it had done before, but the whole of it! It was extraordinary….But not one of them could [catch hold of a tree], for they had left the wood behind and were in a field. Slowly and surely the land tipped sideways, and the children and Moon-Face and the old Saucepan Man began to roll downhill on their cushions. They were not bruised but they were very much frightened. What would happen to them if they rolled right off the land?

Down they went and down, nearer and nearer to the edge of the Rocking Land – and then, quite suddenly, Moon-Face disappeared! One moment he was there – the next he was gone! It was most peculiar.

But in half a minute they heard his voice, lifted up in the greatest excitement. ‘I say, I say, everyone! I’ve fallen down the hole to the ladder that leads to the Faraway Tree, quite by accident. I’ll throw my cushions up through the hole so you’ll know where it is. Roll to it if you can! But hurry!’

The outpouring of love and support and positivity the last days has been completely unexpected and overwhelming. It’s provided a the stability of a Faraway Tree in our Rocking Land. I had not understood until now how expressed kindness and care could be so powerful. There is something rather magical about it. Thank you.

 

Sleeping with Cancer

It’s three days since we received the diagnosis of Eva’s cancer. The first night was the worst. After returning from the doctor’s we maintained as much normality as possible for the kids, communicating the news to Eva’s brother and sister-in-law in a text message before we got home, then brief sentences. So much for their holiday and a relaxed time with their niece and new nephew.

That evening I was short on patience and instigated a consequence for my daughter not listening to me, far too quickly. I told her she would not have a story before bed as she hadn’t listened to me first two times, and then by the time I had counted to three on the third time. This resulted in a tearful four year-old sobbing in bed, crying to me that she would not sleep that night because she had not had a story. (This is a consequence we’ve only had to resort to about once prior, and is the most serious discipline conceivable to her). I sat there on the edge of her bed, wavering between feeling like an absolute shit, an authoritarian monster, whose daughter was about to lose her mother to cancer, and feeling irritated and annoyed at the drama on display before me. My mind quickly went in to overdrive and I imagined a similar scenario in six months’ time, after Eva’s death, where I would be there with Mia as she cried for her mum. Again, this gut-wrenching helplessness and sickening feeling consumed me. I was acutely aware of how my own shock and inability to process what was happening was being transferred on to my innocent daughter. I struggled to watch the scene unfold, and imagined this multiplied a hundred times over the coming months. Eva and I tag-teamed settling her over the next 20 minutes or so, both managing only limited periods of patience with her. When she woke Luca up with her crying, I stormed in and pointed out what she had done. She tried to suppress a sob, and then let it out and said, ‘I’m sorry, it’s all my fault.’

In that moment I was able to stop. I imagined the scenarios that could potentially play out over the next months: there will be stress and tension and low energy and fear and worry and anxiety. Patience will be stretched to the maximum. But our current vocation in life is creating a home and family for our children where we learn how to tolerate uncertainty and discomfort. We want to impart to them how we deal with uncomfortable emotions and feelings and to accept what they experience and then react proactively.

We rectified the situation with her and rolled into bed.

And then the night started.

There’s something surreal about lying next to the person that you’ve slept with for the last fourteen years, and realising that it is all the same yet so, so different. Now cancer lay with us. We held each other and I stroked Eva’s hair. That thick, dark hair. For the first time in seven years, I refused to sleep with ear plugs. I had a strong urge to be present with every sense over the next months. I want to be able to hear Eva’s breath. I want to hear when she is in pain. I want to hear when she is nauseous and vomiting. I want to hear when she’s crying. Our bodies were buzzing, adrenaline surging, and sleep came and went. At some point Eva sat up and I rubbed her back, and she lack back into my arms. To have your best friend sobbing into your arms that she is too young to die and she has only just started living life is the most difficult experience I have had in life. And I couldn’t say no, you won’t die. I couldn’t reassure her. I could only agree and hold and stroke and break inside. I could only just tolerate my own powerlessness and terror and fear and unfairness, and know, cognitively, that her suffering was yet more and deeper.

To quote a friend, ‘Fucky fuck fuckety fuck fuck! That sucks more than words can describe!’ Pretty accurate.

I think our over-riding thought at this point was, how bad is this? Each step during the week was such an unexpected blow, that it seemed entirely possible that things would keep getting worse. I imagined phrases from the CT reports I’ve read as a doctor: ‘widespread metastatic omental caking…infiltration of the portal vein…compression of the inferior vena cava from significant mediastinal lymphadenopathy…’ I feared that cancer would have spread as insidiously as it had first presented and we were simply waiting out a death sentence. My mind was running at a thousand kilometres per hour: will Luca remember Eva? What will I tell Mia if she asks me if her mum is going to die? How fucking unfair is this on Eva, a woman who has put up with so much in her life, that she is going to be robbed of this best part – her children’s growth and development – that she had worked so damned hard for?

The next morning we phoned the GP and received the result of the FNA (fine needle aspirate) which revealed that the axillary lymph node (which drains the breast) also showed cancer cells. This meant that it was not just confined to the breast. Still no-one could tell us how bad things were, what type of cancer it was, or what would happen next.

Two fortuitous things then happened: the first was that the surgeon that our GP referred us to the day before phoned us. His secretary offered us an appointment at 9.30am the following morning (a Saturday). We jumped at the chance, having no idea how we were going to manage to pay to see a surgeon privately.

The second was due to Eva’s tenacity. She was completely unwilling to wait until the following week to get more tests done to know how advanced the cancer was. She wanted a scan that day. I decided to call the radiology place where she had the biopsy done. They were able to schedule us for a staging CT (to stage the cancer – i.e. how extensive it was) that afternoon. We also booked an MRI of her breast for Monday.

Entering the radiology centre, the predominantly female staff cooed over our little boy. He gave cute chuckles and clucks, and people oohed and aahed. The discordance between what was happening around us and what we were experiencing internally was marked. The receptionist asked for Eva’s specialist referral for the CT; I said I was going to do it. They handed me a paper referral pad: ’36F, R breast invasive carcinoma. CT staging.’

I’ve prescribed antibiotics and anti-emetic medications for Eva before, but ordering my wife’s CT to assess whether cancer we had known about for 24 hours was actually elsewhere in her body, was a chilling experience. I felt somehow implicated in the diagnostic and management process, part of which I would usually have a comfortable degree of professional distance to buffer me from. I was aware of how closely it brought me into the process: we would potentially be left with devastating news without anyone to discuss it with, or any other option to discuss what the prognosis or ongoing management options were. It was a scary step, but one that was tempered by my obligation as her friend and husband; if there was a way in which we could arrive at the knowledge of advanced disease prior to that night, it would at least mean that the agony of not knowing would not be our bed-fellow for another night. It would mean we could imagine a little bit more Eva’s and our children’s immediate future.