Hazel McHaffie

brain tumour

Arts, crafts and literature

August. Hard to believe but it’s Festival time in Edinburgh yet again.  Other commitments and limited time are forcing me to divide my allegiance roughly into three divisions: this week – arts and crafts; next week – drama; the following week – literature.

Wooden penSo this week I’ve visited exhibitions and craft fairs, and as ever been hugely impressed by the skilled hands and eyes which create fabulous works of art of so many types.  I couldn’t resist this beautifully turned wooden pen which is destined to become my signing-books tool from hereon in.

It seemed fitting then, in snatched odd moments, to read The Iceberg: a true-life memoir of an artistic family by Marion Coutts which I bought soon after it came out last year … an author for whom ‘August from its first to its last day has been like this, a designated disaster zone, dates crossed out on the calendar like grazes or scars and dotted with emergency notes scribbled in pen.

At the heart of the book, its context, its object and its subject, is art critic and bibliophile, Tom Lubbock. Buying books is his habit; reading them is his work and life. His house is stacked high with them. He can go with practised ease to any title, any quote. His living depends on speaking and writing. How cruel then that he should develop a grade four tumour in the area of the brain controlling speech and language, which will gradually but inexorably rob him of the ability to communicate verbally.

The IcebergVisual artist wife, Marion Coutts, on the other hand, finds she is unable to read since learning that her husband is terminally ill. Words have become irrelevant except insofar as Tom needs them. If he is searching she will find and feed the words back to him until they reach a perfect understanding. In time she becomes Tom’s mouth, although without his brain she feels something of a fraud.

Son, Ev, is a toddler, absorbing language and coordination; learning to understand the world at breathtaking speed. The accelerating forces in his life are a counterweight to the deterioration in his father’s condition. ‘Both are engaged in a work of beyond-the-brink resourcefulness, an improvisatory balancing act, an enforced making up as they go along.’

The family as a unit are also feeling their way in uncharted territory. ‘Tom’s is a high-speed disease with full, motorway pile-up repercussions. It does not pause to allow you to admire the view from anywhere, How many times do I think, Now we really are in trouble?’ And each time the family look back at all the preceding occasions when they’ve said exactly that and realise they seem manageable and benign in retrospect compared with the present calamity.

Marion charts Tom’s decline and her reactions and Ev’s development with an unvarnished and unflinching honesty. Short staccato sentences somehow capture the moments of panic, the heart-stopping dread, the breathless anticipation of what’s coming. Descriptions devoid of self-pity make the enormity all the more raw.

‘In the giant city State of the hospital, new doctors take up their posts in early August and the convulsion of their arrival continues until the end of the month when gone-away staff return from the beaches and rocks of France and Croatia to face the great wave of September’s fresh sick and maimed. Emails go unanswered, messages do not get passed on, dates for procedures come and go, Post-it notes go missing and questions float wistfully in the air. Meanwhile we, outside the institution, outside of everything, are well under way on our own steam. We howl along, all three of us together, with knocks and shocks and sudden up-speedings round curves skewed tight enough to spill us right out, and our bones and skin are broken and torn but there is always more bones and skin to be mangled. Like a miraculous Catholic bloody endurance sport, there is always more. In the space of three weeks, between us we have had hospital stays, fits, diarrhoea, speech loss, tonsillitis, swollen feet, mobility loss, demoralisation, ambulances, glue ear and holidays – everything happens always and forever, on holiday. But we are not tourists. We travel tightly baggaged with our lives. There is nothing left at home.’

Her very writing style, confident and semi-detached and analytical, sets her apart as in control; but the half-buried casual confessions reveal her vulnerability. As she finds: ‘The weak are held close and given tea. They are hugged and warmed by the fire. The strong are revered but kept at a distance.’

Published last year, The Iceberg has been shortlisted for three major literary prizes and longlisted for another one. Wow! Tom, familiar with the literary world, would have been proud of his wife’s achievement. I, for my part, found some aspects of the book irritating, some bewildering, but in many other ways it echoed my own account of a slow death in Right to Die; a kind of real-life authentication of my fiction.

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The Kindness of Strangers

This past weekend, on 1 November 2014, a beautiful and highly intelligent young American woman of 29 calmly and deliberately took her own life in Oregon, with the tacit agreement of those who loved her devotedly. She and her new husband moved there from California so that she could legally take this step.

Though I never knew her, I feel sad that Brittany Maynard has missed out on so much that is wonderful in life. Nevertheless I understand her actions: she was terminally ill with a brain tumour and she did not want to deteriorate slowly and unpleasantly. Who can blame her? As she said herself: ‘I do not want to die. But I am dying. And I want to die on my own terms.’

As it happens, I’ve been identifying more closely with this vexed issue of assisted death than usual this week, because while Brittany was calmly contemplating taking a fatal dose of prescription medicine, doctors were actually working hard to save my life.

After seven decades of valiant but largely taken-for-granted service, my old heart decided to make its presence felt and create a bit of havoc in my life.Get well soon It has set a few records in speed and variety of rhythm over the past week, and when this vital organ is pounding along at 200 beats per minute and assorted members of the medical fraternity are glued to the monitors; when my GP tells my spouse that if ‘anything happens’ between the surgery and hospital, he should pull over and dial 999 – ‘no heroics’; the prospect of death seems unusually close! What’s more, as I am now officially at greatly increased risk of sudden death, heart attack, stroke or other cerebro-vascular disasters, my mind is focusing rather more acutely on what I would choose to happen to me, if I were able to influence anything. And what control I wish to presume over the outcomes. Hmmm.

This is a personal matter for me to ponder, and to some extent share with my loved ones. But the thing I’m carrying away with me from this little skirmish with serious illness is the kindness of strangers. These doctors and nurses who have never seen me before, who will probably never meet me again, who treat hundreds of thousands of assorted odd-bods, have treated me with such friendly efficiency, and respect and dignity and warmth. They’ve even returned expressly to voice their pleasure at my recovery. I’ve been both touched and humbled.

The NHS might indeed often get a bad press – even from its own practitioners! – but when it’s a matter of life and death they can certainly pull out all the stops. I am hugely in their debt. They went well beyond the call of duty for me.

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A legal blunderbuss

Ashya King is five years old. He’s recently had a cancerous tumour removed from his brain – two major surgeries within a month, in fact. If ever a kiddie needed his mum it’s this one. So how come the authorities thought it appropriate to clap his parents, Naghemeh and Brett, in jail hundreds of miles away from their little boy, in a foreign country where he’d be surrounded by strangers speaking Spanish?

Headline: the searchAccording to media reports, the Kents removed Ashya from Southampton General Hospital without medical consent, thereby jeopardising his life. The father claims he told staff he would be taking his son abroad for a treatment he considered less dangerous than the options they advocated. The family then travelled to Malaga to sell a holiday property to pay privately for a relatively new treatment, proton beam radiotherapy (PBT), in Prague, which the doctors in Southampton had declined to sanction. Hampshire Police issued an international arrest warrant on the grounds of suspected child neglect.

When they were tracked down in Spain the parents were held in custody in a high-security prison in Madrid, Ashya was made a ward of court, police were posted outside his hospital room, his six siblings were denied entry. Can you picture the effect of all this on a desperately ill child said to be unable to speak, eat or drink unaided?

Headline - family bannedCritics have been vociferous – understandably. Words like ‘draconian’, ‘inhumane’, ‘barbaric’, ‘heavy-handed’ abound. The injustice seemed particularly disproportionate when the country is still reeling from the news that the authorities failed hundreds of children in Rotherham who really were abused over a 16 year period. Huge numbers (over 200,000) signed a petition which went to Downing Street.

Headliine - reunitedThen suddenly the authorities did an about-turn, though not before the Kings had been separated from Ashya by 300 miles and several days. David Cameron, recalling the struggles he faced with his own severely disabled son, Ivan, called for ‘an outbreak of common sense’. The Health Secretary offered to fly out an independent oncologist to help advise the parents on the best course of action. Procedures were fast-tracked. This whole fiasco was put down to a breakdown in communication compounded by an over-zealous application of the law.

Headline - accepted in PragueThen came an emergency hearing via a telephone conference; the Kings – once again his legal guardians – were given permission by a judge to fly their little boy to Prague; a private jet was put on standby ready to transfer him; he’s now in hospital there being assessed. A full review of the British authorities role in this whole sad affair has been ordered.

That’s what’s been reported. The picture is, of course, immensely more complicated than this, and we are not in possession of all the facts. We can’t be. But what I do know is that the doctors caring for Ashya have a solemn and binding duty of care for him; they couldn’t just shrug their shoulders and turn a blind eye when he vanished. They also have the advantage of objectivity and specialist knowledge. They will know, as the parents can’t, the real statistics relating to PBT; the range of emotions parents in these desperately difficult circumstances exhibit; the conflicts between maintaining confidentiality and defending their decisions; the tension between protecting the child and supporting the family; the real balance of risks and benefits in this particular situation.

My own issue is not with the tracking down of the family, but the aggressive way they were then treated. Surely everyone can understand the desperate wish to save the life of a beloved child; sometimes grieving and bewildered parents do take extreme action. I’ve witnessed such extreme reactions in my own professional life, I’ve read and heard of many more. It’s a feature of their frustration, despair, dread, powerlessness. Locking them up serves no useful function whatever. It merely adds to the distress of the little patient and his troubled brothers and sisters. And fuels a sense of injustice and mistrust. Who does that help?

 

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