The End is the Beginning

Accept what life offers you and try to drink from every cup. All wines should be tasted; some should only be sipped, but with others, drink the whole bottle.

Life always waits for some crisis to occur before revealing itself at its most brilliant.

Paulo Coelho

“Since when,” he asked,
“Are the first line and last line of any poem
Where the poem begins and ends?”

Seamus Heaney

 

 

In Man’s Search for Meaning, Viktor Frankl writes,

‘In some ways suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.’

Reflecting on the last eight months since Eva was diagnosed with stage 3 breast cancer, I’ve thought a lot about meaning. At the ‘start’, we were both adamant that we did not believe there was inherent meaning in her illness. We were resistant to attributing something intrinsically positive to this process of impaired cell turnover. It felt like it would lend the black-and-white process of going from health to illness a rose-tinted facade, something magical or spiritually redeeming. People offered well-meaning encouragements about everything having a meaning; we just didn’t fancy cancer having meaning for our family. We did not think that there was meaning to be derived from a young woman with two young children receiving a life-altering, potentially fatal diagnosis.

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However, I have found it helpful to identify meaning through the process of the last months. Perhaps I’ve derived some form of control from this; I have chosen what to attribute meaning to rather than unthinkingly accepting this as a ‘meaningful’ experience. In my childhood, and the religious circle that I was in, there was a sense of everything being predestined and foreseen by an omniscient, but also omnipotent God. However, it was also acceptable to pray to the same God who allowed a disease or disaster to heal or reverse the situation in some way, ‘for his glory.’ As long as anything was contextualised as being done for his honour, it was acceptable. Of course, such thinking is helpful for the believer; if God is God, then me tolerating my suffering is somehow a refining, redeeming process for my soul, and if he heals me then he is honoured. It’s a win-win.

I’m a long way from this type of thinking now, which for me is a relief and gives a much greater sense of freedom. And I think a privilege of this is being able to actively seek for meaningful experiences in suffering. One area of great meaning has been relational. Throughout the last eight months we have both been changed by the love and care of others. There has been meaning in practicing vulnerability and accepting the care of others. It has allowed us to experience this period with some degree of security and a sense of being supported. I’ve learned something about my own capacity to care for my family and went from being terrified at the thought of losing Eva and being a single dad, to feeling that no matter what may happens, this love we have now, and our current family make-up, will provide us all with strength in the future.

I have found the possibility of having six months at home with my family meaningful. There wasn’t really any other way to do it, but still it meant I had to turn down a new job I had worked hard to get, and majorly delayed me completing my training as a psychiatrist. But I had the last two months at home with my daughter before she started school, and spent six months with my son who was only eight months old at the time of Eva’s diagnosis.

I also found it incredibly meaningful that I could be physically present for Eva when she was feeling wrecked by chemotherapy, and in her moments of feeling emotionally vulnerable. It was meaningful that I could commit all my energy to caring for my family and did not have to try to divide my time and energy between them and a demanding job. It was meaningful that I could take her to chemotherapy, and look after her after her double mastectomy. It was meaningful that when she was not able to be present for the children like she wanted to be, I was free to parent. It was meaningful to see how this brought Eva comfort, rather than her having to worry all the time about how she could parent when she was overwhelmed by chemotherapy, or juggling the offers of multiple friends to help out.

It has been meaningful to see how we have evaluated our relationship and our future as a family. It has been meaningful to see how we have learned to live in the present and be less concerned with the future. It is incredibly meaningful that we felt like our family was already complete with these two children prior to finding out that Eva was not going to be able to have children any more. It was meaningful to see how, even on the lowest, darkest days, these two bundles of love and energy could bring a smile and bring us out of ourselves.

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It was meaningful to see how Eva and I both made space for each other to deal with this like we had to. Eva was on her own personal and confronting journey of facing her mortality, pre-emptively grieving what could be lost should things not go as she hoped. I went through a process of feeling like I had to hold my shit together for everyone and feeling incredibly worried that I would not be able to. (I don’t know what not holding my shit together would look like. Probably disappointingly un-dramatic. Probably sitting on the couch eating chocolate until I spewed or got so irritated with myself I would go and do some vigorous exercise and feel a whole lot better.)

It was meaningful to see how we displayed resilience and strength that we both very much previously doubted that we possessed. I think we always imagined ourselves as a bit fragile; we often had viewed our successes and ability to overcome challenges as evidence of our anxiety and drive to achieve by fear of failing, not due to any positive character traits that we had developed in life. I see meaning in choosing to slow down, sit through this enforced discomfort, and make friends with cancer.

I found meaning in learning how to be kind to ourselves, and by extension extend our empathy with and compassion for others. I see meaning in learning through concrete practice that being vulnerable takes a lot of balls and pays off through reciprocated connection with others.

For now, Eva is taking time to continue recovering. She has an area approximately 30cm by 20cm of radiotherapy burns across her right chest and into her axilla. In her axilla she has blistering and weeping burns about 8cm by 6cm, which is only now starting to dry and heal. She has redness and tenderness along her scars. Her right arm is in a compression sleeve (at $210 a pop, thank you very much) to combat the swelling, which cannot be diagnosed as lymphoedema until three months out from surgery and radiotherapy. She has seen the oncologist, and will soon see the surgeon and the radiation oncologist, and then the gynaecologist to discuss having her ovaries removed. Her body is still weak and she is tired easily and short of breath. And every few months she will see a doctor from her team, and there will be blood tests to check the tumour markers to watch for signs of recurrence. ‘Hopefully, fingers crossed, there’s a 60-70% chance of it not coming back,’ the oncologist said. We try and absorb these figures but all it essentially means is that there is a significant chance of recurrence…but not as significant as the chance of her being in remission. Two dichotomies to hold in our heads at once; the possibility of living until she dies of something else apart from cancer, or of receiving a terminal diagnosis of recurrence.

So the end is the beginning. It’s a new period for Eva and for our family. She is not yet recovered from treatment, and the oncologist said she shouldn’t expect to be until the end of the year. And we have so much to enjoy and to be thankful for, but our lives are irrevocably changed. Our future will be forever tinged with questions around Eva’s cancer. We will have to continue making friends with this discomfort. I want to attribute meaning to that process, although I would rather that I didn’t have to do it through this situation. Eva has not made a ‘sacrifice’, as Frankl put it, but she has been an incredible example of adjusting to massively changed expectations. She has, in a sense, sacrificed the vision of her life that she had nine months ago and has adopted a new perspective with bravery and forthrightness. Yesterday we walked past the tree we sat under a few minutes after she was diagnosed in November, and she has remained true to her promise that ‘I am not going to become a fucking saint just because I have cancer.’ It has been suffering, and she has not suffered it like a saint or a warrior or a trooper, or any other trope that calls to mind idealistic virtues and characteristics. She’s weathered it with humanity and depth and genuineness, and pure love for her children. She’s faced it head on, learned better how to be kind to herself, and not let herself fall into a pit of self-despair or hopelessness. She had moments of fear that life was pointless and meaningless, but she persisted (and frankly I think that awful week or two was largely driven by changes in her mood caused by chemotherapy). She’s not reframed this as a purifying, redemptive process; just to be clear it was and still is TOTALLY SHIT. But she’s refined her values and lived by her principles, and is a wonderful example of living through hardship with gratitude and realism.

 

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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.

Hello from the other side

I just said goodbye to Eva at the doors to the anaesthetic suite. Next time I see her she’ll be a kilo or so lighter with a different body shape. 

Last night we went out for dinner to a French restaurant. She looked beautiful  (as always – see above). Time alone together during this madness. A last supper for her boobs, so to speak. We laughed a lot, and spoke in our usual intense manner – one of the things we first bonded over aged 17 and 19. We put the world to rights and analysed ourselves and others and our french fries and profiteroles. Afterwards we walked on the beach in the dark.

We’ve talked, joked, commiserated and pontificated a lot about breasts the last months. We’ve philosophised about their cultural status, their biological use, and their symbolism. We’ve probably looked at breasts in a new light; two (usually) lumps of tissue designed for mammalian nurturing, but which vacillate between being objects of sexual desire and repositories of a disease which affects millions of women each year.

We’ve considered why the removal of breasts is such an emotionally fraught and psychologically complex process. We’ve talked about reconstruction and its implications.

And for all this thinking and pontificating and trying to exactly define the perfect biological, cultural, social and sexual nature of boobs, it still hasn’t lessened the complexity and inevitability of today.

Eva has approached it with bravery, pragmatism, optimism and thoughtful deliberation. As with this whole process, she does not struggle to identify all the positives and good things in her life and the excellent care which she has received in our privileged, wealthy healthcare system. The cognitive aspect of this illness and its treatment has been the less challenging realm of experience.

The challenging part – as with most of human existence – has been the emotional experience accompanying it. Her feelings of uncertainty and lack of control and worry and anxiety. The confrontation with mortality and its effect on those closest to her. The impact on her role as a mother. The possible effect on her sense of womanhood. The change in her physical health and fitness and her response to not feeling like the fit, strong person she was. 

And then you add in the children’s experience of her illness, my experience, and the collective experience of our family unit. It would make for one challenging spider diagram.

This blog has been primarily a record of my own emotional and psychological response to this process. At its centre is Eva and her disease process, but I’ve never wanted to be a spokesperson for her. It has held a narrative for her for when the processing of all this complexity has been difficult for her, and a form of order-making for our family. I, perhaps naively as a doctor and human, under estimated the ripple effects of a serious illness on the spouse and immediate family members of a patient. I feel guilty that perhaps my experience has been foremost through this writing; but I make no apologies. It has, somehow, been helpful for us all (even if our children are not aware).

And in a few hours, once she wakes up, the next stage will begin. Perhaps for Eva this will be the most defining moment of her illness. Not defining of her, but her experience of illness. This is irreversible, visible and scarring. It’s also, hopefully, definitive and curative. 

This beautiful lady was laughing until the last minutes. We took photos of her in her fetching hospital one-size-fits-all paper undies which could fit about four of her in. There were tears, and she looked vulnerable and small as she was wheeled away down the hall in the vast hospital bed. As she was pushed by a friendly fellow in scrubs, and we rushed to keep up with the nurse marching ahead of us, the Queensland sun shifted and bounced past the gum trees through the windows on to the tears on my love’s face.

Farts, not Tumours

Vomiting five year-old.

Unsettled toddler.

Cancer.

Looming operation and resultant booblessness (‘tits aff’, we say in Scotland).

Uncertainty.

Unpredictability.

Anxiety.

Lack of control.

Career instability.

……………

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)

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.

paddleboarder

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.

 

 

 

 

Fudging Our Way Onwards

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

Into The West, Annie Lennox

 

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

Leaves of Grass, Walt Whitman

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

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

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Swimming hole, Wappa Falls

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

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

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

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

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Tidying up the fuzz

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

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

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

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

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

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

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

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

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

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

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

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

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

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Life in the middle; learning to live in the in-between.

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.

Kurt Vonnegut

What’s in store for me in the direction I don’t take?

Jack Kerouac

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.

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