The Breast Days: One Year On

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.

(Brené Brown)

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.

(Paul Coelho)

 

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.

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Christmas 2016

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.

  1. 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.

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The End is the Beginning

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

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

Paulo Coelho

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

Seamus Heaney

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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