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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Fudging Our Way Onwards

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

Into The West, Annie Lennox

 

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

Leaves of Grass, Walt Whitman

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

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

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Swimming hole, Wappa Falls

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

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

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

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

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Tidying up the fuzz

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

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

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

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

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

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

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

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

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

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

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

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

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

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The Lost Art of Gratitude

Four days ago a social media feed shared something that I had posted three years ago to the day. It was a meme from Elephant Journal I had come across on Instagram:

It is not happy people who are thankful; it is thankful people who are happy.

2014 was my self-designated Year of Gratitude, complete with a gratitude journal and occasional Instagram images of things for which I was grateful. (How can it not be on Instagram if we are thankful for it, along with green smoothies, weird pouts, and odd filters which make one’s skin look like plasticine?)

And it was important for me. I read a lot about gratitude and happiness, and I learned some small but significant lessons about gratitude’s ability to change my attitude.

It has been about seven weeks (okay, who am I kidding: seven weeks to the day) since Eva was diagnosed with breast cancer. It feels so recent, but life has changed so dramatically that it simultaneously feels like a lifetime ago. I read a good quote today in Elizabeth Gilbert’s Big Magic, by Joan Didion: ‘I don’t know what I think until I write it.’ Throughtout my teens and twenties, this was most definitely true for myself. I have changed somewhat in regards to this in my thirties, partly due to some major life events, greater emotional awareness, and a job that requires self-reflection and an ability to identify and suggest theories of mind in others, in person (writing letters to patients is generally frowned upon). But it’s still very relevant, as evidenced by this blog. 

So what do I think about gratitude now? 

I vacillate wildly. 

In less introspective, more cognitively-driven moments, I feel gratitude on a comparative level: ‘I’m grateful that Eva has cancer in Australia and not South Sudan’; ‘I’m grateful that Eva does not have brain mets’; ‘I’m grateful that we have two healthy children’, etc etc.

These are all indisputable facts. But they reek to me of compartmentalisation, and some sort of odd selfishness; by feeling pity for others worse-off than us, I can somehow put our experience in a neat box.

As one or two of us have discovered, feelings and human experience fit in a neat box much like an eight-man tent with 33 steel poles and a ground sheet the size of a football field eases back into its stuff sack.

And my lived experience – and I feel it is unfair to try and describe Eva’s as it hers, and is more complex and multifaceted than mine, obviously – is like that eight-man tent. With eight men in it. Eight rugby players, having a big weekend. With amphetamines and alcohol and Valium and weed and a lot of testosterone and having just won the league. So there are probably eight women in there, too. I’m having trouble with that stuff sack presently.

So this other, less cognitively-administered and compartmentalised part goes something like (and excuse the language): this is fucking shite. And fucking unfair. She had a breast lump 17 months before which no-one followed up on. She’s just had a fucking baby. She just lost a fucking pregnancy and a fallopian tube before that. And now she’s losing her breast. And her ovaries. And she’s like a fucking zombie half the time. And it’s an emotional and psychological cyclone for her. And she just gets worse physically, every two weeks, not better. And she has mouth ulcers. And poor appetite. And nausea. And headaches. And the steroids make her depressed. And she has to try and think about if she wants a new breast. Or whether she wants both breasts removed. In which case if she wants two new breasts. And it could fucking come back. And then what. And is she getting a cold today? And a breast-cancer survivor told her Tamoxifen is the worst drug in the world because it makes you feel like shit, and she has to take that for five years. WTF? 

And then compartmentalising, pragmatic, non-emotionally-involved Simon points out all the rational reasons about why everything will be OK. But I am highly suspicious of this compartmentaliser. I have an inkling that rationalism and reasoning are a way of being positive because it is so fucking terrifying to actually engage with the opposite. Now I’m all for optimism and visualising the positive and purple carrots and manuka honey, but I’m not going to trust those over chemotherapy right at this point in time. 

So, how to find this balance between terror and acceptance, emotional authenticity and cognitive safety switches, positive mantras and nightmarish possible scenarios?

And I am drawn back to gratitude. I am grateful for our amazing healthcare system; I am grateful that if there is a complication, we have easy access to expertise. I am grateful that in this washing machine of emotional gymnastics (or drug-fuelled rugby orgy in a tent – my metaphors are as disparate as my feelings) that people are kind and good and loving. I am grateful that there are still moments, hours and days of beauty in this (I write this in the dark, sitting on the deck of a friend of a friend’s cabin in the Byron Bay hinterland. It’s humid, but cooling slightly as dense raindrops start to fall on the row of frangipanis in front of me. Cicadas and crickets sing their song, and a distant white noise reminds me of the sea rolling in to Broken Head (new name for this blog?). Eva’s lying on the bed inside taking time to read. Kind strangers have opened up their property to us. There is most definitely beauty here of every kind.)

I am grateful for our children, in all their energy-sapping, joy-giving, life-enhancing, tiredness-inducing, lesson-teaching, smile-bringing loveliness. I am grateful to be with my best friend as she goes through this. I am grateful for all her skill and strength and character which always shines through, even in the tears and discomfort and fear and sadness. I am grateful that this is, somehow, a strengthening experience as opposed to a weakening one – despite the gulf of weakness we often feel. I am grateful for friendships, even as they are changed through this. I am grateful that the feelings of loneliness in this journey are challenged by people who elbow their way into the unpredictable and precarious experience when we are not so good at inviting them in. I am grateful for inspirational thinkers and doers and be-ers (beings?) who challenge us to somehow go on believing all the potential good out there. 

And I am grateful, somehow, in some weird way, that we can simultaneously hold the horror and the happiness, the positivity and the pain, the belief and the burden. 

And I feel better after that, and possibly know a bit more what I think now. 

(Main image from the deck of Sue and Pete’s cabin where we are staying for three nights. Beautiful people. Beautiful place.)