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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2017: How do we live by our values this year?

In every life there comes a point when you have to make a decision about how you will live.

It is this broken road with pitfalls and sharp turns and unexpected traverses that has brought me joy and adventure.

– Alice Walker

 

Something Eva and I have spoken about at times over the last weeks is trying to continue living by our values, even when life appears to be sub-par on some fronts. This has often been in relation to parenting; aiming to still parent by our values even if energy is lacking, impatience is more prominent, or our general tolerance of little people is less than usual.

This morning Eva was discussing about aiming to ‘make friends with discomfort’ in 2017. For her, the discomforts are many and multifaceted and are not limited to the discrete physical symptoms associated with treatment for breast cancer. The complex psychological effects of living with this illness and its treatment continue to surprise us, as well as the inevitable emotional instability associated with tiredness and stress and anxiety. The previous night we sat through a monologue by a well-meaning gentleman who was recommending alkalinated water, manuka honey, and purple carrots (no joke) for the management of cancer. Now, I’ve no issue with alternative medicine, but I do have issue with a lack of evidence for a treatment. I drank at least two glasses of wine during this, and our host fortunately then brought out the port. Eva listened very graciously whilst I imagined creative ways of hiding purple carrots about his person. Might have been a kick-start for him making friends with discomfort.

At breakfast Eva and I discussed further this making friends with discomfort and amended it to making friends with vulnerability and discomfort. The last weeks’ journey has been one of vulnerability in different ways. The sensation of being vulnerable to a life-threatening disease process; the vulnerability towards treatment; the vulnerability of our family to this massive emotional and practical upheaval; the emotional and psychological vulnerability we have all felt as individuals; and Eva’s more complex and deep-seated vulnerabilities covered in other posts about how this process of cancer will change many things about her (see A head of hair, a breast, two ovaries, and a slice of identity; Cancer’s haul.)

Another understanding of vulnerability is how we have related to others through this. This blog has been a vulnerable process, sharing intimate and partially-formed and conflicting and uncomfortable thoughts, feelings, and responses. There was the paradoxical wish to protect Eva and our family and close ranks, with the desire to be open and honest and share the intricacies of this process, as best as we were able. We recognise our need to be open and to involve others, but this necessitates vulnerability as we accept help and kindness and love and care, of quite mind-blowing proportions. I have tried to understand why it is, at times, uncomfortable to accept the care of others. The superficial answer would be pride; it is at odds with our individualistic and self-protecting society. But I don’t think that is the over-riding feeling for Eva and me. I think the vulnerability partially relates to receiving something that we don’t know if we will ever be able to ‘repay’ to others, and accepting that it is not something that necessarily should be repaid. We have tried to be conscious that people enjoy caring and giving and showing their concern in the midst of this hairy bollocks situation, and do not want to disrespect them. (Doesn’t that in itself sound snobby and self-protective? ‘I allow you to help me so that you receive the benefit of not feeling disrespected.’ Boak.)

The fact is, for some people, and we include ourselves in that cohort, it is just scary to accept that people might simply be good, kind, loving, compassionate, generous, and, frankly, beautiful. We grew up with an oft quoted Bible verse ‘call no man good’, and it was instilled in us that we were all born in to sin, we are sinners who are inherently evil and deserving of death, and that soon God will destroy the world and take a chosen few to the new Jerusalem whilst the rest burn in the fiery lake for the rest of eternity.

Funsies. Quite the way to form the world view of a child, regardless of what one believes.

I know it is not easy for many to unquestioningly accept kindness from others, but it has been a great lesson and experience for us. It has demonstrated to us the strength in being vulnerable; as we reach out to others and they respond, we feel supported and not alone and cared-for. We have asked for and been offered help, and it has been given unreservedly.

This evening I was thinking about values in relation to something else. I came across a core values list (http://jamesclear.com/core-values if you want some ideas) from which I chose six which have been significant for me over the past two to three years, but which I want to cultivate and focus on living by in 2017. They are:

  • authenticity
  • balance
  • compassion
  • determination
  • inner harmony
  • optimism

Authenticity to continue being open with others to engender genuine relationship. Authenticity to acknowledge the discomfort and vulnerability, to work with it, and not to repress it. Balance in my attitudes, views and opinions. Listening to and wanting to learn from others (purple carrot man excepted (joking, he was very nice, but it was late, I’d drunk too much, and we weren’t up for stopping chemo and surgery for dodgy coloured root vegetables)). Emotional, psychological, spiritual, relational and physical balance. Compassion for my wife, my children, people I meet in the day-to-day, people who have so much less safety or resources than me, and so much more suffering. And some for myself too, as it makes sense that unless we are compassionate towards ourselves with our own weakness and foibles and character deficits, we will find it difficult to show the same to others. Determination to care for others, to pursue my goals, to work hard at whatever I’m doing, to believe that I can make a difference. Inner harmony obtained by paying adequate attention to physical, spiritual, emotional and psychological health, and living by my values in my relationships, job, and creative endeavours. And optimism, that people are, generally, kind and good and thoughtful and loving. (Don’t worry, I’m not deluded.)

Wishing you all perseverance and hope in 2017; the commitment and strength to live by your values; and a lot of success with purple carrots and a mobile water alkalinator (I know someone who can get you one).