Busy living in the shadow of
Things known but unseen, silent
And achingly loud in all
Their implied darkness.
Busy living amongst the ruckus
Of children's dirty hands
Scratched feet, sun-kissed and sweaty,
Their tender, giant souls our teachers.
Busy living grounded here and now
By four hens, greenest garden, endless tablets
Cool pool, looming scans with brooding shadows,
This constant undulation of the sacred and profane.
Busy living with sense-making and non-sense
Accepting, the unnavigable ride of odds and
Chances, trends and norms, while holding out for
There’s a way a disaster throws people into the present and gives them this supersaturated immediacy that also includes a deep sense of connection. It’s as though in some violent gift, you’ve been given a kind of spiritual awakening where you’re close to mortality in a way that makes you feel more alive. You’re deeply in the present and can let go of past and future and your personal narrative, in some ways. You have shared an experience with everyone around you, and you often find very direct but also metaphysical senses of connection to the people you suddenly have something in common with.
(Rebecca Solnit, on On Being with Krista Tippett)
Vulnerability is the birthplace of innovation, creativity and change…[it] sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.
When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny.
Just over a year ago, Eva received her first dose of chemotherapy. Her next one was two weeks later on December 20th. Christmas Day 2016 was outstandingly depressing; she spent most of the day in a post-chemo fog, prostrate on the couch. I remember in the afternoon walking down to the veggie village with our 9-month old baby as our 4 year-old daughter stayed home and watched a movie on the sofa beside Eva. The heaviness was immense, exacerbated by the season. But even then, there was peace in nature. The grass was at its greenest before the long months of a Queensland summer took its toll. Our son crawled and bum-shuffled, fascinated by sticks and stones and the cool earth.
So one year on, where are we along this road? Over the last months, Eva has re-read parts of the Breast Days of Our Life. She described it as providing a narrative and structure for her own personal experience of diagnosis and treatment of stage 3 breast cancer. The four months of chemotherapy are particularly hazy for her due to the cognitive effects of the cytotoxic medicine. She asked me recently if I had thought about writing anything on it again; I had, but also needed a break in the post-treatment period. We needed space to recreate and re-establish this new existence.
And life has gone on. Our daughter finished her first year of school, apparently unscathed by the experience of the last year (if her volume of speech and energy levels are anything to go by). She thrived and buzzed under the tutelage of her amazing prep teacher. She had mini-dramas with friends, grew stronger and more co-ordinated, and now is able to read her toddler brother his baby books.
Our baby is well and truly a toddler. He speaks first words in a mixture of Germlish (German and English). He propels himself headfirst into the swimming pool. He is doted upon by his older sister’s friends. He is engaging and smiling and affable. He shrieks with delight, and also with dismay when he is no longer allowed to play with the Christmas tree lights plug at the socket.
In the past month Eva has experienced more and more days where her energy levels remain equal and stable over the course of a day. She no longer feels like she must sleep as soon as Luca has a nap, for fear of not being able to make it to the end of the day without feeling like death. She continues to process her new body which has changed in so many ways. She has gone from a breastfeeding mother of an 8 month-old to a menopausal 37 year-old whose hair is no longer even the same anymore, who has had both breasts and her ovaries removed. She has pragmatically and bravely faced questions and potential issues around her new identity, and asked herself if it even changes anything about her identity? She is re-establishing a life which she had just settled in to one year ago – enjoying being a stay-at-home parent looking after a baby – to questioning whether she ‘should’ go back to work, or should she stay at home with a rambunctious toddler? Her feelings change but she has found some settledness in the thought of letting her body and mind continue to heal for the coming year at least without having to consider re-embarking on her professional journey again. The comorbidities of breast cancer survivors are now well-recognised in the literature; it is difficult and tiring to try and explain to people why she is not yet herself.
We attended the ‘Club Chemo’ Christmas party, organised by her medical oncologist for 300 of her patients and their families/support people. It was a good, if strange, experience. Eva appeared to be the youngest in the room, with perhaps a few more patients in their forties. But it was a good reminder of how life goes on and people continue to return to this Christmas party year after year.
But we hold within us the tension of two potential futures; one is where Eva lives to old-age and dies of a non-cancer related event and has nothing to consider again in relation to her experience of cancer. And the other option is of a recurrence, which, at present, is a terminal diagnosis. Metastatic breast cancer has no cure, although people can live for years with ongoing chemotherapy and radiotherapy to reduce the cancer burden.
I remember in one of the first blog posts I stated rather emphatically and probably aggressively that I did not want to view this as a heuristic or didactic process. I would never condone portraying any difficult experience as being there primarily as a reason to teach or instruct. However, there have been surprising and noticeable lessons gleaned over the past year. Here is a distilled version of them.
- Uncertainty is endemic to the human condition
So much of our life is concerned with trying to reduce uncertainty and increase security. (It’s interesting that I used ‘security’ as a synonym for ‘certainty’.) Starting with dealing with a crying baby, we are unnerved by not knowing exactly why they are crying. As we grow older, education is perceived as an investment in the future to make certain of financial stability and opportunity in adulthood. Financial stability is one of the hallmarks of how we define security and certainty; are we financially ‘secure’? Are we financially ‘independent’? Whole sectors are based on identifying variables which are a potential threats to this source of security. And it goes on and on. This year’s experience of cancer has thrown the uncertainty of multiple areas of our life into a harsh light of scrutiny: health, finances, employment, relationships (both within and outwith our family), mental wellbeing, and the unknown future.
But out of this uncertainty has come growth and opportunity: our relationship is better than it has ever been; we’ve experienced how resilient we are as individuals, a couple, and as a family; we’ve experienced overwhelming love and care and generosity from others; we’ve learned to ask for help from others; we’ve realised new areas of strengths, and have framed our weaknesses within a more balanced perspective; we have experienced how vulnerability has begotten courage, which has led to strength. We have learned to be less unnerved by the vicissitudes of life, and to accept that suffering is part of this beautiful, unpredictable, rich, and rewarding life. Our blessings are inestimably more than the trials of millions (billions?) of others.
2. Perhaps people are mostly kind, good, and caring?
The premise of our individualistic western societies is that we need to care for ourselves first, which then extends to our immediate families. Thereafter, it can be a free for all. We have outsourced care for extended family to other organisations and the state. The corporate sector is beginning to wake up to the fact that people are no longer driven purely by financial reward, celebrated success, or prestige. People require purpose and meaning in their occupations to maintain feelings of contentment and connection. One of the main ways of doing this is by identifying ways in which an organisation is helping others. Personal experience through our upbringing and later life experiences can darken this view. Religious beliefs in some circles are based on the premise that humans are ‘fallen’ and innately sinful and lacking goodness. One of our experiences, alluded to above, is re-experiencing the goodness of others. The presence of demonstrable expressions of love and care was a shocking reminder of how much I did NOT expect this from people. We feel irrevocably changed by others’ openness and thoughtfulness. Rebecca Solnit (above) describes this as ‘this supersaturated immediacy that also includes a deep sense of connection’, this ‘violent gift…that makes you feel more alive.’ We do feel more alive, more purposeful in our day-to-day existence. We’ve started learning self-compassion, seeing the uselessness of perfectionistic, fearful, driven tendencies. Imagine how we would change our worlds if we treated ourselves and others with the expectation of kindness, goodness, and altruism?
3. Vulnerability, strength, courage, and purpose are closely related
We tend to idolise overt displays of success and achievement. We ascribe characteristics of strength and courage to people who seem to have reached significant states of wealth, fame, or even ‘nobler’ pursuits, such as personal development or artistic endeavour. But we are slow to recognise the traits which stem from vulnerability – openness, transparency, genuineness. We tend to downplay that courage is not always comfortable, as Brené Brown says, and that vulnerability is the birthplace of innovation, creativity, and change.
It’s hard to encapsulate how the vulnerabilty we have felt and displayed this year has changed us and opened up new opportunities, because it is still an emerging and ongoing process. But it’s undeniable that our willingness to change, despite not feeling ready (when are we ever ready for disaster?), is endowing us with a greater sense of expectancy and excitement for the future, no matter what that may be. Like Paul Coehlo says, the challenge will not wait, and life does not look back.
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.
“Since when,” he asked,
“Are the first line and last line of any poem
Where the poem begins and ends?”
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.
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.
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.
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.
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.
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.
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.
¹Just to clarify, I do NOT have heart failure.
²Just to clarify, I have NOT (completely) psychologically decompensated.
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.
Vomiting five year-old.
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.