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