Looming operation and resultant booblessness (‘tits aff’, we say in Scotland).
Lack of control.
Last Friday we attended the ED (emergency department). Eva had three days of abdominal pain and a feeling of fullness in her pelvis. We’d sat on it (not literally) for two days but as we took a walk on Good Friday we recalled our last episodes of sitting with unexplained symptoms: one month of post-partum mild bleeding ended up as a post-partum haemorrhage in a public toilet, HDU admission with a one month-old, blood transfusion and D&C; two days of pelvic fullness ended up being a ruptured ectopic pregnancy with half a litre of blood causing the discomfort, and emergency surgery; and then that growing breast lump during pregnancy and breastfeeding which an ultrasound had not previously identified.
So we went to hospital (public holiday so GP surgery not open). Eva had, perhaps subconsciously, designated these four weeks between chemotherapy and double mastectomy as hospital-free, get-fit-for-surgery, enjoy-life-as-much-as-possible time. On the way to hospital we both voiced our fears: worst case scenario was a metastatic caecal mass, or ovarian pathology such as an ovarian cancer with free fluid in the pelvis causing the irritation. Despite a normal CT and PET scan in December, our trust in imaging and diagnosis had taken a bit of a bashing. And unfortunately, the diagnosis of breast cancer in a 36 year-old very healthy breastfeeding woman with no family history of the disease makes one realise that shit happens without an (obvious) cause. The professional part of me ran through symptoms with Eva: no urinary symptoms; some mild alternating bowel habit but no fresh blood or melaena; no nausea or upper GI symptoms; amenorrhoiec due to the Mirena and possibly menopausal due to chemo; no fevers; discomfort on movement (walking) and palpation but no peritonitism; no gravitation of pain; mild (2/10) right lower quadrant discomfort.
Dx: cancer, cancer, cancer (infused with our anxiety). ??appendicitis
To cut a long story short, Eva had a large canula inserted into the scarred veins on her left wrist. Examination was unremarkable – mild discomfort on palpation, no masses. Bloods were all normal. Ultrasound was unremarkable. She was offered a CT but we decided with the current findings and results, the exposure to more radiation, and the high likelihood that it would not change any management, that it was unnecessary.
So we left with an uncertain diagnosis (which is very common in abdominal pain), but that it was more likely to be wind or some GI spasm than a malignancy.
A bad fart, not a tumour.
“You must have been so happy,” you say. “What a relief you must have felt,” you say.
On one hand, yes. Farts always trump tumours. And it’s nice to not be thrust into again dealing with pending unexpected nasty pathology. But…the emotions it gave rise to. It was like the first weeks of her diagnosis after the initial shock: the churning stomach; racing thoughts; calm, quiet exterior; feeling of impending doom.
So it knocked us more than we expected. Eva felt her mortality thrust in her face again. She realised that odd, unexplained symptoms for the rest of her life may play on her mind more than they ever did in the past. The dealing with hospitals and healthcare professionals who, in their own sanity-saving manner, remain distant and not wanting to commit to this or that for fear of getting it wrong – either a fact or the way they communicate.
And the mental tiredness that comes with this wondering. We expected Eva to be recovering from chemo day by day – and she does feel better to some degree – but unexpected, unpredictable, unforeseen events put us on edge again.
And then you have a sleepless night with a vomiting child. And your toddler is upset at all the commotion and vomity crying unhappiness. And the swirling mush of feelings goes on and on.
And you just want to move to Thailand and go on a month-long yoga retreat and lie in a fucking spa for hours and wander through jungles and climb hills and have no responsibilities and eat things which are doused in lime and chilli and fish sauce and get sun burnt and dive off cliffs into beautiful seas.
There’s a rather exclusive spa nearby called Ikatan. We make frequent jokes, on the tougher days, about moving in there. Cancer and two small kids would be no problem in a luxury spa, right?
Okay, onwards and upwards. Good to remember that most painful things in life are just farts and not tumours. (Mostly)
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.
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.
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?
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?
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.
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.
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.
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.
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.
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.
Do you realize that all great literature is all about what a bummer it is to be a human being? Isn’t it such a relief to have somebody say that?
Hello babies. Welcome to Earth. It’s hot in the summer and cold in the winter. It’s round and wet and crowded. On the outside, babies, you’ve got a hundred years here. There’s only one rule that I know of, babies – God damn it, you’ve got to be kind.
What’s in store for me in the direction I don’t take?
Eva’s now finished round six of eight chemotherapy. We’ve settled into a groove: trepidation, slow decline, feeling like life’s moving at a snail’s pace, gradual improvement, returning of some degree of energy, better appetite, and three to four days of living as normally as possible. And then it goes again.
But we’re comfortable with this. We have found routine in the unsettledness, and we realise what routine-seeking beings we are.
Now the circular pattern reveals itself to be more of a spiral; we’ll call it an upwards spiral, like a long stairwell found in the tenements of Edinburgh. At the bottom, the five or six floors loom overhead, and the slightly dank smell drifts up to the frosted skylight fifty or sixty metres above. The broad, worn, cold stone steps which have been there since before Victoria was queen lead up and up and up.
So we’re ascending, but it’s an ascent towards getting Eva’s breasts chopped off and the premature end of her fertility, which is a weird thing to ascend to. We’re seeing the surgeon this evening, and Eva will discuss with him about getting a double versus a single mastectomy, prior to six weeks of a radiotherapy and then getting her ovaries removed – the latter to ensure there’s no rogue oestrogen floating around encouraging any remnants of oestrogen receptor-positive malignant cells to blossom and flourish.
Many people talk about the journey of cancer, or the journey of life, or the journey of a relationship, or even the ultimate journey: X-Factor (or whatever your country’s equivalent is). All of which implicitly imply this teleological, forward-moving, arrival-seeking, and goal-oriented process.
I’ve been reflecting on this living in the journey. Or another way of phrasing it is: to be living in the middle of what is happening now, without focusing on a destination or achievement. I have been considering this for a while (the past couple of years), but perhaps less consciously so. At the grand age of 35, I have an acute awareness of that well-known principle of time: as you get older, time speeds up. I’m actually a bit terrified of these 80 or so years being swept away from under me and forgetting to enjoy the ride as much as I should because I’m thinking about the destination of each stage. These last three months have thrown an anchor into the rushing current of life and have caused us to slow down and observe ourselves, our children, and how we manage this as a family. For this I am truly grateful. When all this started, I said that I did not believe that Eva’s breast cancer was somehow intrinsically meaningful or sent to teach us something by the cancer deities, but I was open to learning things through it.
So what are some examples of this difficulty we all experience trying to ‘live in the middle’ instead of just waiting for an end point?
In no particular order:
Children – waiting to have children, for children to grow up, for children to move out or move back in, or children to have grandchildren. Waiting for them to start school, complete school, to start university or complete university.
Career – waiting to get that promotion, to get a job – any job! -, or to become a millionaire so that THEN the dream can be pursued. Waiting for career aspirations and goals to happen, despite not working in a job that is enabling them. Tolerating a job that is having an adverse effect on our health because of a hoped-for end point of change or improvement or recognition.
Partner – waiting to meet The One, or waiting to leave the one you thought was The One, or waiting for The One to change into a better One.
Health – waiting to find the time/motivation/energy to improve our health. Waiting for that ten-day silent retreat to enable us to quieten the busyness of our minds. Waiting for our family’s eating habits to change so we can eat more healthily. Waiting until after the birthday or holiday or a religious feast until we change our diet or physical activity levels. Waiting until the kids are older or work is less busy or time has expanded until we improve our health.
Capital – waiting until we have The House to enable us to feel settled and comfortable. Waiting until we’ve worked hard enough to get a deposit together to buy any house to get on the property ladder to climb towards The House to make sure we are safely housed in forty years from now. Working this hard now for security then.
I’ve been doing a lot of soul searching the last weeks. It probably got a bit too much at times; my mind was whirring 24/7 and I was finding it difficult to be present in the moment. This time off work is for me to look after Eva, provide stability for our children, and to look after myself, and what I found was that the last months I have been waiting in the middle of a lot of situations; medical training to finish, cancer treatment to end, eldest child to start school, our baby to sleep through/sit/crawl/walk/talk/triple jump, my novel to be finished. Waiting, waiting, waiting.
And this rush to be finished is driven by anxiety. It’s driven by not feeling comfortable with the discomfort of lack of control and the inability to hurry the natural unfolding of life. It’s driven by the desire to achieve more, gain more control over our future, and the fear of missing out on.
So I have been learning about slowing down and sitting with this discomfort. It has had a very practical application: waiting whilst Eva goes through energy-sapping, life-changing treatment that is ploddingly regular. Just after I had charted my career path for the next three years (to the end (see?) of what has been a rather tortuous journey which formally began 16 years ago when I started studying) which would result in arrival at Fellowship, Eva’s diagnosis exploded my plans and halted this conveyor belt. After nine years of studying, and six-and-a-half years of working as a doctor, this enforced break is throwing up questions and possibilities that would have otherwise escaped me.
I’m learning that in the midst of illness and disruption to life’s usual pattern, as my career is put on hold, as we contemplate mortality and changes within our family, that there is a rich life to be lived. All the usual human emotions – love, sadness, anger, joy, – persist. The same things that brought meaning to life before are those which bring meaning now. Regardless of not getting on that elusive housing ladder, not making voluntary contributions to my super fund, or being able to ‘ensure’ I’ll rest easy when I’m 65 – and THEN I can slow down and have time to pursue what I want to in life – meaning and fulfillment are present here and now. Eva and I have never been particularly interested in material wealth or owning a house as soon as we could, for the very reason that to pursue that at this point in our life would mean sacrifices in other areas: Eva having to go back to work due to financial obligations rather than out of career choice when it suits her and our children best; me picking up more out-of-hour shifts, or choosing a more lucrative career in the city. Our choices have been to give us freedom in the present, and to be able to reduce stress as much as possible. We have not been stress avoidant (Eva’s a high school teacher, I am a doctor – not careers associated with minimal stress – and we moved to Australia with a seven month-old baby four and half years ago), but have tried to maintain freedom from financial or career or general social pressures to conform to expected norms.
And these ‘norms’ may be partially projected by us; we cannot solely blame others or society in general. The last months I found myself slipping in to thinking, ‘maybe if we’d just had $50,000 of savings lying around this would be less stressful’; or, ‘maybe if we owned our own home this would be less destabilising’; and initially, even the thought, ‘maybe if we didn’t have a baby this would not be so terrifying; he needs and deserves so much and we might not be able to provide this’. This is a thought that quickly altered as we gained the confidence that we would be able to provide the stability and love for him which we wanted, along with that for our eldest child, despite feeling emotionally and mentally fragile. As an added bonus, he brings joy and light into our lives and his big sister’s, which has been a daily boost to us. Nothing like baby cuddles and laughs to cheer you up. And we learned from our eldest child’s vivaciousness and energy and ongoing good humour that their needs are still fairly simple – if time-consuming, patience-trying, and energy-sapping.
This morning I’m sitting here after we met the surgeon last night. Eva had a good outcome from it; he agreed to do a double mastectomy which is what she has decided she wants. The road is far from traveled, but we are learning that in the travelling is where the joy is found. We have no idea where the destination will be, which is often exciting, occasionally unnerving, but ultimately we cannot control this. We can make decisions for today. We can decide to be creative, or to immerse ourselves in nature, or do something good for our bodies, or be present with one another and our children, or pursue new ideas and dreams. These are the things which we can invest in (I hesitate to say ‘control’ as seeking control is often counter-productive) and our belief in ourselves, the love of others, the benevolence of the universe (and all spiritual components which that may or may not entail), and the general beauty of life make us positive about our ongoing journey until our final destination.
Sometimes life is no more complicated than sitting at the window, writing, looking at the sea and sky, and drinking from your favourite mug. That’s where the living happens. Happy life in the middle, people.
‘The Way of Openness is about embracing and welcoming and being curious about whatever is in front of us, staying in touch with our feelings, and being open to the constantly changing nature of what comes at us. This Way is not easy, but neither is the life of running from discomfort and uncertainty, as we’ve seen. This Way takes practice. It takes courage. It takes love…
In the end, this is about whether we want to go through life running from what we find and seeking comfort, or whether we’re going to find the courage to be open to everything, to finally be free of the running. In the end, we find that there was nothing to be afraid of after all. It’s a wonderful place to be, this changing, uncertain, uncomfortable and miraculous world.’
My wife is on day three of her fifth round of chemo for breast cancer. She started a new type of medication this week. We had gotten ‘used’ to the vague pattern of events with dual chemotherapy drugs she received for her first eight weeks of treatment; nausea and headache, tiredness and sleeplessness, loss of appetite and lethargy. We were starting to get a grip of the pattern of the fourteen days between each round of chemo.
And this week it is all change, again.
Now she is also thinking ahead to surgery. Single versus double mastectomy. Reconstruction or flat or prostheses (she’s considering tattoos over the scar(s); I’m thinking two large owls, with ‘two-tit-tattoo’ written in large letters for when people stare on the beach.) And she’s trying to figure out what the post-operative period will be like with a 14-month-old the size of a bull mastiff running around. And what will six weeks of Monday to Friday radiotherapy sessions be like at the hospital thirty minutes away? And how will menopause be? And will she miss her ovaries? And, and, and.
And so we find ourselves grasping at straws, seeking for definites in a world of shifting shadows.
For me, this period of change and chaos has thrown up a lot of questions about meaning and direction. Our two children, a five year-old who has just started school and a ten month-old just starting to walk, are a grounding, stabilising presence in their vivaciousness and neediness and joyousness and uninhibited expressions of emotion. (This morning, Friday 6am: it is the end of the third week of school and tiredness is evident; I had to console my distraught daughter who was unable to create a haute couture dress from pieces of felt for her doll. And then we embarked on this masterpiece, thank you very much):
This enforced staying open is necessary and good. One of my favourite writers, Brené Brown, in her book Daring Greatly, says:
‘Leonard Cohen writes, “Love is not a victory march, it’s a cold and it’s a broken hallelujah.” Love is a form of vulnerability and if you replace the word love with vulnerability in that line, it’s just as true. From calling a friend who’s experienced a terrible tragedy to starting your own business, from feeling terrified to experiencing liberation, vulnerability is life’s great dare. It’s life asking, “Are you all in? Can you value your own vulnerability as much as you value it in others?” Answering yes to these questions is not weakness: It’s courage beyond measure. It’s daring greatly. And often the result of daring greatly isn’t a victory march as it is a quiet sense of freedom mixed with a little battle fatigue.’
This week I’ve been experiencing some of that quiet freedom along with battle fatigue. It started off with a couple of days of confusion and feeling aimless and wandering in a couple of areas in my life. Perhaps not aimless but struggling to choose one way out of about five options, and despairing at this new area of uncertainty and potential change. But then small glimmers of freedom started appearing.
I spoke with a guy whom I respect who is at the forefront of yoga in Australia – Duncan Peak. He is a world-renowned teacher and comes from a military and footie background. I reached out – an act of vulnerability – and he responded. I was reminded that through sharing and connection, when we are just ourselves in all our plainness and lack of specialness, the goodness and selflessness in others often presents itself. I think the opposite is true; when we remain closed and suspicious and fearful, or inauthentic and defensive, we do not elicit the kindness and love of others.
A few days later a neighbour – whom we’d never met before – turned up at our door. She had come across this blog and wanted to share with Eva her story of breast cancer. She spoke openly and honestly, with great humility and sensitivity. Again, vulnerability here lead to vulnerability and connection in person.
About two months ago I sent one of these blog posts to the Huffington Post asking about the possibility of it being published. After Elephant Journal published one post, I didn’t think any more of it. Until I received the email from Arianna Huffington yesterday saying she’d like to publish it. Again, this openness and vulnerability led to outcomes which were simultaneously scary and exciting.
Doors creep open, new friendships are born, deeper connections are made as we are curious and accepting and reaching out to the world around us.
It’s an ongoing struggle to accept the unknown, not be attached to definites, and to simultaneously approach this whole tumultuous experience with an attitude of curiosity and vulnerability. It is so much more tempting to close up shop, become hard, put on our game face, and attack this in a military-style onslaught of energy and aggression and overt shows of rejection. It’s humbling to remain open to others, the kindness and love, and even the unsought after advice (nice article sent to me this week advocating apricot kernels over chemo and radiotherapy because tumours love sugar in apricot kernels and then the cyanide in the kernels is released and kills the tumours. Who knew?)
Openness, vulnerability. Two fuzzy words with edges of steel. Nice concepts which are painful, at times, to embody. My mantra during a yoga session this week was:
I inhale strength and life;
I exhale fear and confusion.
Which could be rephrased:
I inhale true vulnerability;
I exhale disconnection from my self and others.
Wishing you connection, openness, and authenticity in your journey of vulnerability.
Demagogues survive politically by fostering hatred, especially against minorities. They try to divide people up by their religion, country of origin or the color of their skin…. Love and compassion trumps [sic] hatred and intolerance.
US Senator, Bernie Sanders
My wife has breast cancer at the age of 36; and the world keeps turning.
A beautiful person I worked with as a junior doctor was killed by a car two days ago in London; and the world keeps turning.
A tennis partner’s three children were killed in a plane crash ten years ago; and the world keeps turning.
Venus Williams was likened to a ‘gorilla…charging’ on ESPN, and someone at my local tennis club called Serena Williams a ‘silverback’ and complained that ‘they’ can call each other ‘n****r’, but if ‘we’ do it ‘we’re in big trouble’; and the world keeps turning.
Thousands of people seeking safety and a new life are incarcerated on two islands north of Australia; and the world keeps turning.
Aboriginal people were counted along with livestock up until a few decades ago; and the world keeps turning.
Children sleep homeless and exposed in Aleppo; and the world keeps turning.
Millions of Jews, homosexuals, the physically and mentally disabled, and immigrants were killed in the 1940s; and the world keeps turning.
Wars were started based on false intelligence and fear of the Other; and the world keeps turning.
Over a million and a half people have been shot by firearms in the US in the last forty years, whilst five have been killed by immigrants seeking asylum, but asylum seekers are banned rather than guns; and the world keeps turning.
A reality TV star, billionaire property tycoon with a personality disorder, who joked about fucking married women with phony tits and grabbing their pussies, and a gift for rhetoric now leads the world’s largest economy; and the world keeps turning.
Millionaires and billionaires lead many developed countries around the world, including Australia and the US, as this is a marker of the ultimate success; and the world keeps turning.
Let’s not let the world’s turning be a sign that something is acceptable.
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.
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.
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:
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’).
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).
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:
Childhood adversity (including poverty, abuse – of any kind, exposure to domestic violence and substance abuse, and poor relationship (disrupted attachment) with a primary caregiver)
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.
*Featured image property of my wonderful friend and excellent photographer, and a man of great resilience, Andy Rudman.