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.

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)

When Feelings Get Complicated

Last week Eva chose to get her hair cut short in preparation for the likelihood of losing her hair after the next round of chemo (starting tomorrow). A lovely friend from kindy offered her skill and time to cut Eva’s hair. We sat on the deck on a hot morning, seeking some shade under the large pandanus tree. Mia helped to spray Eva’s hair before Nicola cut it. That morning, Mia had been concerned that people would laugh at Eva because she might look like a boy. We spent some time looking at Google images of women with short hair, and Mia was reassured that short hair on a woman would not detract from her mum’s loveliness. Nicola plaited Eva’s thick hair and tied it off, and Mia has proudly kept it.

Eva is as stunning as ever; of that there’s no doubt.

 

One of our friends, Paula, made some headscarves for Eva, which Mia and I attractively modeled:

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We have continued to receive home-cooked meals from the kindy families (and others). We have had people make baby purees for Luca and provide playdates for Mia. People have labelled Mia’s school clothes, provided a cleaner, offered to do our laundry, our Christmas shopping, and buy groceries. Friends have offered to fly in from the USA and New Zealand, other parts of Australia and Europe. Others have provided support which have made it possible for me to be at home to look after Eva and the children, for the time being.

And it’s a strange mix of absolute gratitude and wonderment at peoples’ care and kindness and thoughtfulness…and discomfort. Discomfort at ‘being a burden’, or feeling like we’re creating a bit of a drama, or like we don’t deserve this. I have this subconscious line of, ‘well, no-one’s died’ echoing in my head sometimes. But then I reflect how oddly close to home and reality and potential that could actually be. And it all feels so bizarre.

Eva’s felt increasingly better over the past four to five days, although today she got very out of breath carrying Luca around, and walking up the street to our house (an incline which a few weeks ago we would run up – me pushing Mia on her bike, and Eva pushing the pram).

I think going from being a doctor to being the spouse of a patient is a difficult and confronting transition to make (for me). I try and imagine myself being at work at the moment; perhaps trying to assess a suicidal teenager, or assist a family who are unable to manage the behaviour of their autistic child, or trying to work with a young person with anorexia nervosa who may have a body weight which puts them at risk of sudden death, and communicating to them and their parents the need to be hospitalised and medically stabilised.

And I find I am not capable of doing that at the moment, and this is hard. I feel like I can hold my shit together as much as I need to for my family on these days (although teething/crawling/face-planting/nappy rash baby, emotional/over-tired/over-stimulated pre-schooler this afternoon, and looming chemo tomorrow, made me breathe a few ‘what the f**ks’ a good number of times today). I feel in some way guilty for not being able to be at work and do my job in a stretched service with patients with real needs…but also find it unthinkable to not be with my wife and children on a daily basis just now. In reality, there is not a workable solution to having all three of them adequately looked after during the chemo week, and I wouldn’t want anyone to be doing it as much as I want to. Perhaps I am grasping at controlling this situation as much as I can? Perhaps it is just the hard reality of having a seriously ill spouse and a baby? A combination of them all, I suppose.

In my job there is a lot of emphasis placed on knowing the limits of one’s capabilities, knowing when to seek second opinions and the input of senior colleagues, and of liaising with a multidisciplinary team to achieve the optimum outcome for a patient within the real-world, often complicated situation, in which they currently live. I don’t think I have ever been averse to constructive criticism or identifying areas for improvement. But it is something else to think and know: I shouldn’t be doing my job at the moment.

In a sense, I have become a patient. There is probably a psychological toll at present which is significant enough to impair some of my decision-making abilities, to potentially skew my ability to work in a professionally empathic manner with the requisite amount of emotional and psychological self-reflection, and to also affect my cognitive abilities in stressful, charged, and unpredictable clinical situations.

It’s an odd situation to be in. But why should it be? If I had cancer, or had broken my leg, or had a chronic physical illness which was exacerbated and required time off work – it would be clear. And as I reflect, I recognise that I – a psychiatry registrar – still carry prejudices and preconceived ideas about mental illness, people’s ability to ‘cope’, and the shame and embarrassment that can be associated with not feeling like one is coping as one previously could.

As I spend the hours of the day trying to organise a family and think about what needs done and consider the practicalities of our future and think about Christmas and going to Centrelink and trying to prepare for the coming week and wanting to look after myself to be in the best shape to care for my family and spend time with loved ones visiting from interstate and communicate with loved ones near and far and liaise with super funds and training colleges and and and….

insidious thoughts bubble away subconsciously: ‘it’s just a bit of stress, Simon. Are you really this anxious? How are you going to cope if things get worse? Tim [or Graeme or Andy or any other person I can think of] wouldn’t feel like this.’

And it goes on and on. The song is on repeat and it becomes a negative mantra.

So, what brings me out of it?

  • my wife, who is still so frigging sensible and wise and logical and fun, it’s mind-blowing
  • my children, who are beautiful and fun and lovely and full of joy and are being their own amazing child-like selves (that’s this moment’s positive spin. They’re sleeping just now.)
  • my extended family and friends, who are thoughtful and kind and supportive and loving and are wishing us the best and sending us strength through their messages and gifts
  • our community, who have stood up like nothing on earth and are caring for us in the true sense of community (communitas – ‘an unstuctured community in which people are equal…the feeling of great social equality, solidarity and togetherness’)
  • yoga
  • tennis
  • writing
  • eating food prepared by others, shared with others
  • the beach
  • the sea
  • praying
  • breathing into it
  • wearing one of Eva’s headscarves, designed by Paula, with its own black rasta-style pony tail:

 

 

Feelings do not fit into neat categories generally, and especially not when major illness is involved. So best just to stick your headscarf and fake wig on, smile, and whisper a gentle meditation.

 

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‘Twas the night before Chemo…

This is tonight’s sunset.

We’ve spent the day in preparation for the uknown week ahead: cleaning the house, ordering in shopping, attending Mia’s end of term Christmas ballet concert, putting food into freezer bags. We’ve been on edge, this constant alternating between feeling like ‘this is fine, we’ll ride this wave’ with, ‘shit, why now? What’s going to happen? How are the kids going to be? How long can I be off work?’ I reckon this will be the pattern over the next weeks, until we will get into some sort of chemo groove and know how and when to call in help.

 

But banter and fun continues. Thank God for WhatsApp with great mates in far off lands: ‘I hope you’re not sitting alone, drinking gin to the Christmas tree lights, and weeping to Home Alone 2. This would finish me off…Yeah, [your hair] looks very Trumpian. Trumpesque.’ 

Other messages are more raw: ‘I think the overall feeling just now is threat. It’s hard not to feel unsafe.’

I’m noticing how much my mind has been humming over the past ten days with memories of working as a house officer, and then as a resident in emergency. (The young man with testicular pain, whom I had reassured that pain was relatively uncommon in testicular cancer, until I examined the hard, craggy, solid mass that was about four times the size of his other testicle. The elderly man unsteady on his feet, who turned out to have a brain metastasis and a massive primary lung cancer. The mother in her forties coming in to emergency at 3am in horrific pain with advanced breast cancer and widespread bony metastases, who had declined mainstream medical treatment and instead she and her husband had got into severe financial difficulty funding alternative treatment which denied her opioid painkillers. The women in cardiac arrest in emergency who, when we removed her top to perform CPR had a massive, fungating tumour of her breast, and had probably died from a pulmonary embolus (a blood clot which has traveled to the lung and is more common in people with cancer) and had likely never sought treatment for her breast cancer. The old lady with difficulty breathing due to the massive ascites (a collection of fluid in the abdominal activity) secondary to her ovarian cancer. The multiple people in the liver ward in Edinburgh, jaundiced with end-stage hepatocellular carcinoma. The pancreatic cancer which killed the patient within three weeks of diagnosis. The colorectal cancer in the young women who attributed her constipation to pregnancy. The man in his thirties who had worked as a gardener whose malignant melanoma had seeded metastases in his femoral region. The young man with colorectal cancer who kept apologising to us for sobbing as the surgeon delivered the extent of how advanced his cancer was. The women who arrested whilst I examined her for her sudden onset chest pain and breathlessness as a first year doctor in the middle of the night. Cancer. Cancer. Cancer.)

My mind buzzes away, denying the possibility of other things going wrong (venousthromboembolic disease, neutropenic sepsis, renal injury from chemotherapy).

And I breathe. And hope. And pray, in various ways. Not always literal prayers, like I would have in years gone by. But prayers all the same. Not prayers for help and healing – I don’t believe it makes sense to pray for that if you believe in a God who oversees all things, including breast cancer in a young mother – but for peace, and endurance, and optimism, and mental and emotional stability, and acceptance of what has been and what is coming.

I come back to breathing. I come back to the beauty around me. The messages, the love. Eva in the pool, enjoying this last day before treatment starts. Mia somersaulting off the edge. Luca slapping the water in glee. The incredible food being dropped off by people. The offers of help coming left, right and centre. The beautiful weather, the sea and the sand. The safety of our home. The kindness of our community. The warmth of people both near and far. These are the concrete, tangible expressions of life and spirituality and something bigger than us, bigger than illness and disease.

I am tired of this to and fro between fear and anxiety, and all the present love and warmth around us. I think the former is more present in the tired hours, or when we have been dealing with something particularly stressful, or considering the practicalities of life that still need to go on.

It’s a good lesson for me. Sit back. Breathe. Be present. Acknowledge the fear. Acknowledge all the conflict inside. Acknowledge the pain and the anger. Breathe into it.

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The Discipline of Hope

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

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

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

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

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

Hope is the thing with feathers 

That perches in the soul 

And sings the tune without the words 

And never stops at all.