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
To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.
– C.S. Lewis, The Four Loves
“She is a friend of mind. She gather me, man. The pieces I am, she gather them and give them back to me in all the right order. It’s good, you know, when you got a woman who is a friend of your mind.”
– Toni Morrison, Beloved
No one was around when it happened. There was no applause or congratulations. No one thanked her or praised her. No one noticed a thing. Like a leaf falling from a tree, she just let go.
There was no effort. There was no struggle. It wasn’t good and it wasn’t bad. It was what it was, and it is just that.
In the space of letting go, she let it all be. A small smile came over her face. A light breeze blew through her. And the sun and the moon shone forevermore.
– Rev. Safire Rose, She Let Go
‘Your cancer’s biologically challenging,’ she said. ‘It has survived dose-dense chemotherapy, aggressive surgery, and hormonal suppression. You’ve had good oestrogen-blocking medication, but you’ve still relapsed in less than a year, and yesterday’s bone scan is worse than July’s.’
This was about the sum of the recent meeting with a breast oncologist for a second opinion. She confirmed Eva’s feelings about her cancer; from the start, she had been unimpressed with the cancer’s response to chemotherapy. The initial breast mass had only reduced by about 30% in size after the initial brutal chemotherapy regime for advanced, large cancers.
The last week has felt surreal at times. In a sense, there is a paradoxical release of pressure. Eva’s primary oncologist kept referencing a patient whom she has with bone mets who has managed for about 10 years on a fairly conservative regime of hormonal therapy and bone protecting medication. That scenario was starting to feel incongruent with how Eva’s cancer presented, relapsed, and is now progressing, though. In a sense, we wondered what we had to do to keep Eva alive for this magical ten years when things are pointing resoundingly in another direction. And we tread the strange line of opinions about what is the optimal treatment regime: those who think her treatment is not aggressive enough and she should now be on chemotherapy already, and those who think that she should now be utilising one of ten or twenty diets which detoxify, alkalinise, macrofy, and heal the microbiome, among other things.
We discussed further with the oncologist. If the next treatment, ribociclib, works, the best case scenario is that it slows disease progression for 12 months or so. The main aim of that medication is to sensitise the cancer to the oestrogen-blocking medication, which until now has been pretty ineffective. If that doesn’t work, or when it does stop working, the next step is chemotherapy. When pushing her for a prognosis, she said that she thinks Eva will be alive in one year as she has not had any chemotherapy yet (since her metastatic diagnosis), but she ‘just can’t say’ about two years. So we’ve made some sort mental aim of two years, and anything else will be a bonus.
There feels such a tremendous pressure to display a type of positivity that does not consider death, or even the possibility of it. Considering death is one of the last major taboos, especially in our society which is averse to its possibility and the view of death as the final defeat. Well-meaning people say, ‘Be strong’, ‘be positive’, ‘don’t think about the future; just think about today’. I’m not quite sure what the other options are; lying in bed weeping, not working, not caring for ourselves or our children? Is the consideration of death as a natural part of life a pessimistic acceptance? Would we tell an 8 year-old with leukaemia to ‘stay positive’, or suggest that his or her state of mind is perhaps the deal-breaker in whether they survive or not?
Throughout this trip (I can’t bring myself to write ‘journey’ again), it’s been immensely important to us to be completely honest with ourselves and one another about what the final outcome of this may be. To not consider this – to somehow think that a consideration of death could undo the effects of the current available treatment – to us seems inconsiderate, especially for our children. Of course death is scary and sad and inconceivable and seems absurdly unfair in Eva’s situation. It helps me, somehow, to consider the unfairness of millions of people’s lives each day. Unfairness and sadness and suffering are intrinsic to our human condition. Would we advise a slum resident in Mumbai that it’s merely their attitude that will determine whether they get out of there or not? And do we consider the unfairness of a mother who has lost multiple infants in a country where child mortality is still high? What about my friend who lost three children at once in a plane accident? Or another friend whose adult son died in horrendous circumstances in an industrial accident? Unfairness is not uncommon, and is not reserved for the Other.
Death and dying are abhorrent in our society. We’d rather talk about people’s sexual fetishes involving cold custard and mashed potatoes than about death, despite the 100% ubiquity of the latter. (I presume the former is a less common human experience.)
For us to live well as a family, and for Eva to maintain her pragmatic, life-affirming approach to her mortality, death needs to be part of the narrative. Of course we hope for this end point to be delayed as long as possible and will consider ways in which to achieve this; I don’t think there is much stronger than a mother’s desire to be with her children as long as possible and to spare them grief for as long as she can, whilst maintaining a quality of life that allows her to be present in a meaningful way. But to not allow this consideration and to frame death as He-Who-Must-Not-Be-Named feels somewhat unhelpful.
In stoic philosophy, the contemplation of death is encouraged. Marcus Aurelius says, ‘Death smiles at us all; all we can do is smile back.’ And, even more eloquently, ‘In short, know this: Human lives are brief and trivial. Yesterday a blob of semen; tomorrow embalming fluid, ash.’
Medieaval Christians practiced memento mori, the consideration and remembering of death to help live a more disciplined and ascetic life.
Some Buddhists observe maranasati, a meditation practice on death which helps to live today with urgency and mindfulness.
Is it something to do with our post-religious culture which does not value death as one of the rites of passage and, therefore, cannot discuss it openly? Some beautiful, well-meaning Christian friends have also focused on the post-death experience as being an impetus to think of God in a certain way today.
I wonder if we can become more conscious of death in a way that is removed from the overwhelming tragedy traditionally associated with it in our culture, or as the reason to cling to a rigid belief system whilst still alive? I wonder if we can accept it in a way that makes us more able to live fully and engaged and authentic in our day-to-day lives now? Since a young age I was brought up in a fundamentalist religious household, where death was both a promise of somewhere where everything would become better, but simultaneously potentially where you would burn for eternity should you not do the right thing. So I’ve spent many years considering how I will deal with death, both pre-emptively and posthumously. But this new, acute confrontation with it actually somehow helps me feel less alone to know that so many others have traveled this path, and that it will be my own to take one day – who knows, maybe unexpectedly or suddenly, much sooner than I could imagine? I have observed death as a doctor, in my family, and may experience it again as an observer much sooner than I had ever feared. Can I come to that place, like the poet above, to think that it isn’t good, it isn’t bad, it is what it is and it is just that? I doubt that will happen any time soon, but I love the sentiment.
For now, we have a biologically challenging cancer in Eva’s body to deal with. We wish to goodness that we could go back to that pre-November 2016 innocence, where our biggest concern was getting our 8 month-old to sleep through the night. This is Eva’s lot for now, and I need to be present for her and our children in facing all potential scenarios and outcomes in the weeks, months and (hopefully many) years ahead. We need to accept the awful vulnerability of love which will end up in heartache and pain at some point. We need to simultaneously let go of all expectations, not grasping or fighting to mental and emotional exhaustion. It is a dreadfully beautiful experience of anticipatory grief because of how much we have to love now.
Light up, light up
As if you have a choice
Even if you cannot hear my voice
I’ll be right beside you dear
And we’ll run for our lives
I can hardly speak I understand
Why you can’t raise your voice to say.
– Snow Patrol, Run
If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world…
We must admit there will be music despite everything.
We stand at the prow again of a small ship
anchored late at night in the tiny port
looking over to the sleeping island: the waterfront
is three shuttered cafés and one naked light burning.
To hear the faint sound of oars in the silence as a rowboat
comes slowly out and then goes back is truly worth
all the years of sorrow that are to come.
Jack Gilbert, A Brief for the Defense
And so it came, much sooner than expected, a gradual crescendo of unsuspecting pain, dismissed possibilities slowly taking shape into real likelihoods, anxious thoughts tumbling onwards and upwards until, with one nervous phrase by the poor secretary, our fears were confirmed.
It’s been one year since Eva finished radiotherapy for her stage 3b breast cancer. It was preceded by a double mastectomy, and before that four months of dose-dense chemotherapy. In August last year, she had a relatively insignificant-seeming operation to remove her ovaries; a surgical ‘P.S.’ to reduce the likelihood of cancer recurrence, underlined by the bold fact of her new menopausal status. The final third of last year was a slog. For Eva, it was marked by this recovery of her body from the onslaught of treatment it had been subject to that year, with all the complex emotions and psychological chess moves that cancer ‘survivors’ have to make. We were both exhausted mentally and were only too happy to begin 2018 and to see Eva beginning to recover her strength. She did everything she was ‘supposed’to; she continued her healthy lifestyle and got back to doing exercise almost daily. Yoga, pilates, Strength After Breast Cancer weights program. The appointments continued as she sought to manage lymphoedema in the arm from which she’d had 29 lymph nodes removed.
But the niggling possibility never left us. Friends and family were pleased to see us move on from this unsightly, uncomfortable stage of life, into a future burgeoning with new hope and possibility. And so were we, but cautiously so. The facts were burned indelibly on our brains, though: a 36 year-old woman, with no family history of breast cancer, who had discovered a breast lump 17 months prior to her diagnosis of breast cancer, whose tumour mass was 8cm in diameter by time of diagnosis (lost amidst lumpy bumpy lactating breasts), with five lymph nodes positive for cancer, the surgeon’s manner throughout the treatment…the medic in me knew that these were never good prognostic indicators. Eva also presumed that, through her scanty knowledge of cancer prior to her own diagnosis, a recurrence was not unlikely. The ’70/30′ chance of non-recurrence cited by the oncologist was really best-case scenario. Thus far Eva had spectacularly missed every best-case scenario.
So we surfed the blood tests every few months. We’d have a frisson of nerves prior to a follow-up appointment with her surgeon or oncologist, then would feel elated at the ‘normal’ test results. And then the tumour marker, CA 15 3, started to go up. 13. 13. 14. 14. 15. 19. 19. But all below normal – less than 30. When Eva was first diagnosed, her CA 15 3 was 19. This imprecise, crude marker can be raised in all sorts of conditions – benign and malignant – but is also NOT raised in 40% of breast cancers. The doctor in me struggled; if I had a patient whose blood tests were rising but were still below normal, what would I do? Nothing – they are normal. But for a blood test which is a tumour marker, which is imprecise? This is harder.
At one point, the surgeon suggested that ‘if she was his wife’, he would get a PET scan just to monitor for recurrence. This would first require a CT of the chest to justify the decision-making to obtain a PET scan. Eva thought about it and discussed it with her oncologist: should she have extra investigations despite being asymptomatic on the basis of a rising but normal blood test? She decided not to. Had we discovered 3 months ago she had metastases it would have changed nothing, but robbed us of another 3 relatively peaceful months.
And they were. For the first time Eva started consciously imagining three and five and ten years ahead. She took part in new creative interests and explored new opportunities; drawing classes, art therapy, Zumba. She engaged in psychological therapy to navigate this post-cancer world. She thought about possibilities of further postgraduate training. And she was offered a full-time temporary teaching job at her old school, which she accepted.
The low back pain started like one of the many niggles she has experienced throughout treatment. It seemed likely that it was muscular strain as a result of the weights’ training she was doing in her Strength After Breast Cancer program. But it persisted, and more frequently she would walk around with a heat pack tied to her back. Five weeks ago she became very constipated and bloated, and the pain got worse. In a matter of days it was waking her up at night. Friends arrived from abroad; she is a GP and she too – like Eva’s own GP and surgeon – thought that this was likely muscular strain. Two days later I was about to walk out the house to go to work when, for some reason, I said to Eva that I was going to take the morning off and we were going to get a CT of her abdomen. I was more concerned about the sudden-onset bloating and constipation and wanted to rule out abdominal or pelvic pathology. I called the radiology department and booked an ultrasound and a CT. We attended and were told that we would be given the results if we returned two hours later.
We went and had lunch, and then returned. The secretary told us nervously that the radiologist had had to send someone to get Eva’s old CT images to compare with the new ones and that he would give the results to her surgeon directly.
We went round to the surgeon’s office in the hospital. He wasn’t there but his secretary listened to us and said that she would phone him when he was out of theatre and ensure that he spoke to the radiologist.
About thirty minutes later she phoned us. She said that the surgeon wanted to see us at 5.20pm the following day. Eva started panicking and crying. Her first thought was that this was a terrible time of day as it was just before the kids had dinner. She used my phone to phone back the secretary, but inadvertently dialled the surgeon’s personal mobile number which I had saved.
‘Some spots on your bones….I’m flying blind – I haven’t seen the scans myself….your spine….likely secondaries….’
A bone scan two days later confirmed the findings. Multiple vertebrae, ribs, head of left humerus, her skull, and throughout her anterior pelvic girdle. The painful spots were her pelvis – which progressed so rapidly that within the space of a week I had to be helping her sit up out of bed – her L4 vertebra, and the head of her left humerus (shoulder). She had two weeks of radiotherapy to these spots – one hour per day. During the second week one of the spots on one of her left ribs became painful, so she had a further session of high-dose radiotherapy to that – not before it fractured at the tumour site, resulting in a new, more excruciating pain.
So, this is it. Metastatic or secondary breast cancer. In her bones. An incurable disease. All treatment is to slow disease progression. A 22% 5-year survival rate. A 3-year median survival. No return to work – at this time – like she’d planned.
I’m writing this a month and a day after she received this news. We’ve moved from that first week’s state of shock into the next stage. This stage consists of every feeling under the sun, every single day. Hopefulness, peace, fear, disbelief, worry about the kids, the struggle with uncertainty. We have no idea how quickly things will progress. We have no idea whether we should be banning anything but the most positive thoughts of her being in the 1% that lives another ten years. We have no idea how much time we have together as a foursome. We are alternating between overwhelm and normality and emotional numbness. It’s a shitter.
Yet, somehow, we also feel like we are doing…okay. One of the positives of having been a catastrophiser in the past is that reality is rarely as bad as what one has catastrophised about. We are not falling apart. We are still able to laugh (a lot). We still have a weird sense of humour. Death jokes are not taboo. We somehow move in and out of imagining an extended period of time together, with a more rapid change in our foursome’s existence. There are periods of bleakness and fear and of loss and sadness, absolutely. But as Eva said in relation to considering the grief that is to come, ‘It’s easy to turn it into a Susan Sarandon movie in our heads with violins playing as we imagine our motherless children. But the fact is, they are likely to grow up to be fairly normal human beings.’
But we somehow relish the rational black-and-white of it: this is simply a shit hand of genes. Eva’s mum tracked down her dad in Italy, with whom she has had no contact for 33 years; he confirmed that there is no cancer in his family. So beautiful Eva, the offspring of two families with no cancer (except her maternal grandfather who had lung cancer in his 70s), is the one manifesting some epigenetic-mediated phenotype of irate oncogenes.
We know where the future is heading, but just not at what pace. But wait – isn’t that true for all of us? We are all heading in this direction, pace undetermined. Does that fact that we have more knowledge about Eva’s pace disconcert us more? Is it that the mystery of mortality is being thrust so rudely upon us that we have to deal with this so much more acutely?
All of us must choose, daily, to have the stubbornness to accept our gladness in the ruthless furnace of this world…We must admit there will be music despite everything.
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.
Look, this is how it works. You’re going to die one day. I know that’s kind of obvious but I just wanted to remind you in case you’d forgotten. You and everyone you know are going to be dead soon. And in the short amount of time between here and there, you have a limited amount of fucks to give. Very few, in fact. And if you go around giving a fuck about everything and everyone without conscious thought or choice – well, then you’re going to get fucked.
The Subtle Art of Not Giving a F*ck, Mark Manson
By declaring that man is responsible and must actualize the potential meaning of his life, I wish to stress that the true meaning of life is to be discovered in the world rather than within man or his own psyche, as though it were a closed system. I have termed this constitutive characteristic “the self-transcendence of human existence.” It denotes the fact that being human always points, and is directed, to something or someone, other than oneself – be it a meaning to fulfill or another human being to encounter. The more one forgets himself – by giving himself to a cause to serve or another person to love – the more human he is and the more he actualizes himself. What is called self-actualization is not an attainable aim at all, for the simple reason that the more one would strive for it, the more he would miss it. In other words, self-actualization is possible only as a side-effect of self-transcendence…Forces beyond your control can take away everything you possess except one thing, your freedom to choose how you will respond to the situation. You cannot control what happens to you in life, but you can always control what you will feel and do about what happens to you.
Man’s Search For Meaning, Viktor E. Frankl
Time stands still
Beauty in all she is
I will be brave
I will not let anything
What’s standing in front of me
Every hour has come to this
One step closer
A Thousand Years, Christina Perri
The other morning I was driving my daughter to school when the above song, A Thousand Years, played. It’s somehow one of those songs that five year-olds know already, despite never having been exposed to the Twilight series and vampires with existential issues and teenage girls with emerging personality disorders and werewolves with impulse control disorder. She asked me,
‘Daddy, is this what they sing before they’re going to die?’
I paused. ‘Before who dies?’
‘The people. Is this what the mummy sings so that her children know that they will be okay when she dies?’
It was said unassumingly, brightly even, without any hint of self-reference which I immediately became hyper-aware of. I stumbled to find an explanation which did not involve thousand year-old vampires and haematophagy.
Eva has completed her third week of five of daily radiotherapy. ‘It reduces the chance of systemic recurrence,’ the surgeon said. ‘Even though it’s a localised therapy, it seems to improve the prognosis.
Chance. Reduction. Prognosis. Risks. Imprecise, vague terms which had really been on the periphery of my horizon. There was an unquestioning acceptance of the medical and surgical teams’ assurance that they wanted Eva to grow old, to be annoyed at the surgeon in twenty years’ time that she had made him agree to chop both her boobs off. They say it earnestly and in a heartfelt manner; I know they are not lying. For what would be the point of saying, ‘you’ve got an X% chance of dying within five years. Fingers crossed you’re not in that group!’
As we’ve emerged into a more normal pattern of life – I have returned to full-time work, Eva is able to lift our hefty toddler and is not in pain from surgery or obtunded by chemo – we have started to think more of the future. Part of this was to start thinking about the months and years ahead. Eva and I had spoken about it to varying degrees, and she had always stated that she knew there was a chance of systemic recurrence of the cancer, but we had too many other things on our plate to think about the exact nature of this.
And then I came across a beautiful blog by Uzma Yunus, a psychiatrist in Illinois, USA, who talks about her breast cancer journey at Left Boob Gone Rogue. The first post I read made me laugh a lot, and sigh in recognition. But I was unnerved by her story; two young kids, also married to a psychiatrist (a tragic prognostic factor, apparently), and had been stage 3 oestrogen receptor positive breast cancer, who less than two years later after treatment was diagnosed with metastatic breast cancer. I had that sinking feeling which was present so often throughout those first couple of months after Eva was diagnosed.
Fuck. This could really happen.
But, as Uzma demonstrates, no matter what stage of a disease process one’s at, there is a life to be lived. There are children to love, other people to care for and to comfort, and to be loved by. She writes,
Cancer pushed me to find my path, it haunts me but I keep walking because now what I am doing is bringing me peace and joy. I make an effort every day to heal. Every day I make a choice to live some more. Life is as much about death as death is about life. They are related paradoxically and that is why I have more zest for life because I know that I will die. I see it up close and clearly every single day. To not die is to embrace life in present, to guard your thoughts and to hold on to peace within.
Eva remains pragmatic, despite knowing very well the potential for relapse. We discussed our wish for her to be around until the kids are grown up. We hesitate about trusting in the ‘power of the mind’ to fulfill such wishes; there is such an attraction to grasp on to superstitions and wacky diets and anything that gives a sense of control in the face of a disease which feels like it is wrestling control away from you.
It has put things into greater perspective for us. I love Mark Manson’s book, The Subtle Art of Not Giving a F*ck. It is an antithesis to a lot of the pop and positive psychology that we are so exposed to (and for which there is some reasonable evidence, neveretheless). He highlights very well how the pursuit of happiness and ease can become a path upon which many stumble because Life. Can. Be. Really. Shit. He argues that, if we were more aware of impending death and our limited existence, we really would give a lot less fucks. As one of my senior colleagues puts it, we are all flotsam on the toilet of life waiting to be flushed. (We’ve warned him about saying that to patients.)
But, on the other hand, I’m also reading about Frankl’s experience in the concentration camps of the Second World War. He is honest and frank about his experience, the hardship, and the wavering sense of hopelessness which he felt and which he saw many others succumb to. He exhibits belief in an individuals’ ability through mentalisation and adopting an attitude of finding meaning in the apparent meaninglessness of the death camps, to become a survivor. He rated his chances of survival at 5%, but chose to find personal meaning in being a doctor and carer of other inmates, living with the daily risk of dying from typhus. He explores the numbness that he experienced in relation to the dead and the dying. He recounts not wanting to wake a comrade from a delirium-driven nightmare because what could be worse than waking up to the reality of actually being in a death camp?
In some ways Manson and Frankl seem to be at opposite ends of an existential spectrum: the former states that we should give no fucks, and the latter states that even when there was no apparent reason to give any fucks, the actual act of giving a fuck ‘(by giving himself to a cause to serve or another person to love’) enabled him and others to survive. I don’t want to misquote Manson, as he does argue that the fucks (okay, getting a bit tired of writing that now) we do give should not be in the pursuit of happiness; they should be given with ‘conscious thought or choice.’ And here I think Mark and Viktor are both on the money.
Pursuing happiness benefits us little. Investing in meaningful relationships and causes imbues us with meaning. As Frankl says, self-actualisation is all well and good (and it’s a pretty trendy subject in many circles, and has been for millennia), but it is only possible as a by-product of self-transcendence.
MEANWHILE, Christina is telling me that she’s loved me for a thousand years, which was not easy to explain to a five year-old, but I did rush out a garbled explanation of my Nana’s love, six years gone, still being present because it’s part of me, and that the love of people who have loved us, even if they die, still make us who we are today.
‘Oh, okay Daddy.’ Phew.
So Christina’s also on the money. Mark and Viktor, too.
But for now, my wife grapples with this very real sense of mortality, and I grapple in close union with her. 75% five year-survival rate sounds pretty good, right? I mean, it’s better than 40%? But it’s 25% less than the rest of us non-cancerous lot. And Uzma is a beacon where, even if that relapse does eventuate, there is still life to be lived. Uzma, Christina, Mark, and Viktor.
Thank you, all four.
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.