When I was diagnosed with incurable cancer, I was woefully unprepared for the possibility of my death. And while our NHS has offered excellent medical care, there has been a conspicuous absence of emotional support alongside my treatment. I needed a ‘place’ and a way to think the unthinkable. And I found it in a little town in north Wales.
“In whatsoever state I am, therewith to be content” Philippians 4:11
One of my favourite places in the world is the Mawddach Estuary in North Wales where the River Mawddach meets the Irish sea, forming a wide sandy estuary. At the intersection of river and sea is the pretty seaside town of Barmouth, a favourite holiday haunt of working-class families of the West Midlands and the Northwest.
As a kid, in the summer, we camped by the lakeside of Llyn Tegid a few miles west of the town of Bala in Gwynedd. When rainy days put paid to our sailing and canoeing on the lake, we headed westward to cloudless skies and the coast to spend a day flying kites, paddling in the sea and eating fish and chips on the harbour wall.
The journey along the A494 from Bala to Barmouth must be one of the most beautiful in Britain. As a child, it was also for me one of the most exciting. As the road twisted and climbed through a wooded valley with the mighty Cadair Idris in view, I would hold my breath in thrilled expectation of the very first sight of the sea. I might be older, but the promise of that view still quickens my heart.
Enigmatic
We try to make a return trip to Barmouth every year though of late, I have come to appreciate a little more the estuary segment of that journey. For me, it is an enigmatic space of wild and subtle beauty that most of us neglect in our rush for obvious pleasures of the beach. Here the water is brackish – not quite the salt of the sea. It is also a rich and increasingly fragile habitat for wildlife. Strong currents and sinking sands render the space largely inaccessible, adding to its mystique. For most of us, it can only be appreciated and enjoyed from managed walking trails.
The estuary is for me an unnerving liminal space that marks the dramatic merging of the river – and its many tributaries – with the sea. It has also come to represent symbolically for me a sense of where I might be in my life – particularly in relation to others – as I struggle with an incurable though (so far) treatable cancer. My diagnosis has cut me off from the more predictable currents of daily life. I have entered the perilous waters of the estuary.
I am afraid and alone.
My husband jokes that we all have a terminal diagnosis. Most of my peer group – friends and family – are battling one or more chronic illnesses, affording them a glimpse of mortality. I’m not sure quite why my cancer diagnosis seems to set me apart, why I feel more exposed to the imminent possibility of death than the friend with heart disease or the relative with type 2 diabetes. Maybe it’s because the wholly unpredictable nature of the disease seems to put me on permanent alert with no prospect of an ‘all clear’ declaration. The three-monthly scans required of my treatment only reinforce the sense that my principal focus – and that of my oncologist – is to keep a few steps ahead of a capricious adversary. Life is lived in quarter years. ‘Living’ with cancer can sometimes seem like a misnomer since the ‘living’ involved is overly cautious and pinched…
I have a newly acquired impatience with the everyday which I know makes me seem aloof. I take no pleasure in the routine things I used to love – waking to a steamy cup of coffee, taking a little pride in how I dress, planning the day’s activities. All seem trifling.
Mortality
I have lost the easy facility for looking forward to something, the little thrill of anticipation and worse, I can’t share that with others. The future is cloaked in dread. It has also shrunk in scope. Mortality dominates my thoughts, imposing an arbitrary time limit on my every consideration. I cancel participation on a much-anticipated two-year postgrad course. A trip abroad is contingent on a CT scan showing my cancer in at least partial remission. I have abandoned all but the most modest personal purchases. New socks? Yes. A smart new waterproof? No. I might not get the wear out of it. (I can at least smile at my grim pragmatism).
At other times, I feel I am ‘further ahead’ on a notional journey, having the dubious advantage of experiencing things in advance of those closest to me. I’m embarked upon a lonely reconnaissance of a strange terrain that no-one else can (or would want to) enter.
The liminal space of the estuary is the imaginary setting for the struggle between the part of me that is hard-wired to fear death – and the part, to which I have become newly acquainted, that wants to contemplate death with clear-eyed curiosity and calm acceptance: “In whatsoever state I am, therewith to be content.”
Anxiety has been the most reliable and visceral response to situations where I believed I was in mortal danger: flying, motorway driving, sitting a piano exam, doing a presentation to managers at work. In each case, death has been the worm at the core of my anxiety’s perception, whether the death involved was physical, social or psychic. People curse their anxiety and seek pills or talk therapy to contain or eliminate it, but I have reason to believe that on at least two occasions (albeit in a life of 66 years!), anxiety has literally saved my life. It has given me the presence of mind to talk my way out of being seriously assaulted; and it has given me super-human strength to helm a sailing dinghy to safety in a furious gale.
I know that while anxiety has been lifesaving, it can also be life lessening in its impact in situations that don’t warrant its high-level alert system. For me, it is the unhelpful constant companion, manifest in catastrophic thinking, worrying, and bodily tension. Anxiety has often cast my troubled mind into a permanent future, cutting me adrift from the here and now. The tension in my shoulders, my habitually clenched hands signify a body in readiness for threat.
In the estuary of my imagination, my old ways of coping are failing me.
Uncertainty
I used to believe that being prepared was the only way to manage uncertainty. My professional life has been devoted to handling crises, equipping me with a range of skills with fancy names, like ‘horizon-scanning’ which involves predicting what might happen, what threats and opportunities might emerge in any given situation. I pride myself on seeing what’s coming long before others. And then there are my skills in strategic and tactical planning which involve imagining possible situations (and my imagination seems to know no limits). Once I have visualised the nightmares, I devise mitigating actions to ensure I’m in the best possible state to withstand them.
But when applied to how I manage the uncertainty of a cancer diagnosis, the energising effects of planning only conceal an untruth about my ability to control events. No amount of thinking, imagining or mitigating actions on my part will stem the march of a tricky disease. My efforts to plan might be motivating, but they are ultimately delusional.
Neither will preparation diminish the emotional pain of facing mortality. There is no predicting how I will feel if (and when) I am told that my cancer can no longer be treated, or worse, when I might be given a choice over whether to embark upon more punishing treatment in the hope of grasping a few more months of life. That would be a cost benefit analysis from hell. I often imagine the scene. The small bright room where my oncologist sits in front of his computer screen with my scan showing the bright lights of my spreading cancer. He will lower his gaze, modify his tone and relay the words he has already rehearsed with care. (As I write this, I sense a gurgle of dread in my stomach).
Nothing in my life, culture or personal philosophy to date has prepared me for living in this transitional space where it seems I am neither wholly engaged in the here and now world nor able to contemplate my death with anything other than immobilising terror. As Isaac Asimov noted: “Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.”
The liminal space of the estuary is the troublesome transition where I seem with a Janus facility to look back at the living world with anticipatory grief and forward to God knows what.
Taboo
It’s often said we live in a culture where death is taboo. My oncologist studiedly avoided the ‘d’ word when he delivered my diagnosis. When describing the treatment he proposed, he searched my face, I think to check I had understood fully the unspoken implications of an incurable cancer. A fleeting exchange of looks between me and the oncology nurse communicated the reality he seemed unable or unwilling to voice. As I left his consulting room, she reached out and squeezed my hand in a gesture of empathy.
For all the big life events I have faced (and in no particular order) – marriage, birth, buying a house, bereavement, separation and redundancy – there have been well-lit sources of help, support and wisdom of a secular kind. But when it comes to death, I can find no place to start the conversation: “How do I live with the possibility of my own death?” I leave each oncology consultation with that question uppermost in my mind. But it seems far too big a question to be squeezed into a space devoted to managing the nerve damage in my feet or addressing the low magnesium levels showing up in my blood. Skilled as he is, my oncologist would probably perceive death as a medical failure to be avoided rather than an outcome to be faced. It seems somehow indecent to raise the possibility.
Right now, I don’t need a philosophy or a faith to guide my way. I need a small and intimate space to weep, shout and curse, to be fully alive to the terror and the wonder (and I am sensing a little wonder in all this). But most of all, I need a hand to hold to steady the feeling that I am falling into a void. The oncology nurse understood that need intuitively.
My cancer diagnosis has activated my death alert system whose powers to ‘save’ me are futile. Contemplation of death, embracing it, even accepting it, are undermined by my hard-wired fear of death. I must somehow summon a different attitude to my situation, one that will pull heavily on my emotions, my intellect and my courage. I want to experience this emerging stance even as the death alert siren screams.
Connection sometimes seems to me to be the only antidote to fear of the final disconnection. If there is a taboo, then I experience it as the censoring of conversations on death in those intimate, everyday moments and places. How do you say to a loved one over a coffee, “I need to talk about dying.” We know the stock responses: “You shouldn’t think like that!” “You need to stay positive!” “Aren’t you being a bit morbid?” I’ve used those same phrases to dismiss older relatives who have wanted to talk about death. Indulging them, I believed, would increase their distress or push them into depression. But in refusing to talk about death, we are reinforcing a mystique around a process we’re all guaranteed to experience. The success of medicine in prolonging our lives means that for most of us, direct experience of the death of a family member or close friend is relatively unusual. I have been bereaved only three times in my 66 years. Of these, one was through suicide, the other two through cancer. For French philosopher Montaigne, death needs to be disarmed of his novelty and strangeness. “…let us converse and be familiar with him and have nothing so frequent in our thoughts as death.
“Where death waits for us is uncertain; let us look for him everywhere. The premeditation of death is the premeditation of liberty; he who has learned to die has unlearned to serve. There is nothing evil in life for him who rightly comprehends that the privation of life is no evil: to know how to die delivers us from all subjection and constraint.”
What is to ‘know how to die’?
Have you ever asked yourself that question? To know how to die. What does that involve? That is what I’m asking right now. And this is what is coming up for me:
- I want to be as curious and as open to my death as I have been to every experience in my life to date
- I want the possibility of my death to intensify my life and my relationships, not overshadow them
- I want to lean into the changes I notice when I contemplate death: I can celebrate that I feel compassion more often and more keenly
- I want to be compassionate too towards my death anxiety, accepting it as a part – but not the whole – of my human experience. I have other parts to draw upon which can help me contemplate death with some equilibrium
- I want to celebrate the ordinary joy of my interconnection with others, family, friends, acquaintances
- I want to tell everyone I encounter how I experience them and how much I love and appreciate them
I will swirl a little longer in the estuary of my imagination. This is the place where I can start to sense what my final disconnection might mean. But I can still send postcards home from this place: in a way, that’s what I’m doing now. And I can occasionally contemplate the sea ahead of me and wonder why I feel comfort at the possibility of the little stream that is my life joining its vastness.
There is more work to do in the estuary. But for now, I will enjoy its beauty.
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