Hazel McHaffie

A diminishing art

Hmm. The latest edition of the women’s writing journal Mslexia has come down in favour of writing books by hand. HandwritingAuthor and workshop leader Jackee Holder reckons that the act of writing with pen/pencil and paper unleashes an extra layer of creativity. The slowness and concentration help you to focus and connect to what you’re writing. D’you think she’s right? Is that your experience?

Queen of chick lit, Jill Mansell, says she hand writes her novels … whilst sitting on a sofa with daytime TV blaring! Goodness, gracious! Queen of nothing me, I much prefer typing my stories – so much faster and easier to tweak and rearrange and cut and paste and find my way round – in perfect peace and quiet, squirrelled away in my study.

But maybe these other authors are more single-minded, not using their hands/time for all the multitude of tasks mine are grappling with. They’re certainly unlikely to be painting interminable iron railings! It has taken more-hours-than-I-care-to-tot-up of painstaking work for ours to go from pink primer to grey undercoat to black top coat (multiply the surface area you see by 2). Unbelievably fiddly and time consuming and weather dependent. We’re planning to christen them our ‘Independence Gates’ because we were working on them in the run up to, and during, Scotland’s vote on the referendum question.

Iron railings

Of course, I’m still writing and reading and thinking alongside the painting. Indeed tedious tasks like this offer very useful thinking/plotting time. I’d love to share my recent reading with you – it’s unexpected and challenging and uncomfortable – but I can’t  because it would spoil the denouement of my current novel if you knew in advance where I’m going. Suffice it to say that some of my acquaintances will draw in their breath sharply – at the very least!

I’m also mentally preparing for a number of looming author appearance – if you’re in the Edinburgh area and interested, I’m at the Portobello Book Festival on Saturday 4 October  (talking about dementia and Remember Remember), and the National Library of Scotland on George IV Bridge on Tuesday 21st October (focusing on organ transplantation and Over My Dead Body). If you come, do make yourself known to me. Incidentally, though they’re ticketed events, both are FREE! With these forthcoming appearances in mind the horrific experience of Kate Long, successful author of seven novels, resonated with me this week. Fairly early on in her career, she attended a bookclub session where members were discussing one of her novels. Turns out no one but the group organiser had liked it at all and they roundly condemned it – in her presence. What made it worse was that Kate had spent £100 and travelled 200 miles to attend the event! And she didn’t like to ask for reimbursement because the group were part of a charity. Insult to injury comes to mind. However, on reflection, since she felt nothing could ever be that bad again, the encounter actually gave her confidence. She now knew she had the inner strength to survive and acquit herself with dignity, whatever was thrown at her. Give that woman a medal for sharing her humiliation with the rest of us. That takes courage. Oh, and subsequent undisputed success, maybe, too.

To date I’ve been lucky; I’ve never encountered that sort of negativity. But maybe I should prepare myself. I’m not at all sure I should bob back as healthily as Kate.

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A heartwarming sequel

Well, here it is: Independence Referendum Day up here in Scotland, but rest assured, I have no intention of writing about it. It’s been done to death already. Moving swiftly on …

As you know, much of my life has been spent grappling with difficult choices – not in politics, but in medicine – and blog posts on these issues aren’t always very cheery reading, so I’m delighted to bring you a fantastic story this week that’s sure to warm the cockles of your heart (whatever cockles are).

Hannah's ChoiceLast year I wrote a review about the book Hannah’s Choice on this blog. It tells the real life story of Hannah Jones who, aged just 13, hit the headlines back in 2008 and challenged the courts when she defied medical advice and chose not to have life-saving surgery. And what’s more her parents found the courage to let her.

But then, Hannah was no ordinary 13 year old; she had a wisdom and perspective borne of suffering. Painful medical interventions and sobering prognoses had been her lot from the tender age of 4 when she contracted leukaemia. And now, on the threshold of adolescence, sadly, her heart was seriously damaged and her organs were failing because of the toxic effects of her chemotherapy. The doctors said her only hope was in a heart transplant. But Hannah declined that option, choosing instead to go home and spend her days surrounded by the love of her family and friends. And she was allowed to make that decision. Wow! What a furore that stirred up!

As I reported on this blog, I was surprised and delighted when Hannah’s mum, Kirsty, responded to my review, and we’ve stayed in communication since. Why am I reiterating this? Because this week marks an amazing milestone.

Hannah starts at Aberystwyth University!

This is the same girl who went home to die. Except … she didn’t. Because a year later when her condition deteriorated she changed her mind and had a transplant, only this time the decision didn’t hit the front pages. Life, Hannah had discovered, was too precious to throw away. Those of us who review high profile cases in medical ethics are often limited to a brief period of time when the stories are newsworthy, and indeed I followed this case closely when Hannah was making her choices. But it’s really refreshing to get a longer term perspective. Especially one like this.

Huge thanks to both mum and daughter for giving me permission to share this news with you. I couldn’t be more happy for them. Cause for celebration indeed.A toast

In that same blog last year I mentioned my brother Rob, who also survived against the odds when he was treated for leukaemia and things went badly wrong. He wasn’t expected to see his 51st birthday. Fifteen years later he has just marked his own milestone: retiring from work aged 65. We celebrated with him a couple of weeks ago.

Here’s to them both and all those, who like them, challenge the rest of us to take stock and re-think our preconceived notions, beliefs and opinions.

 

 

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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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A short stay in Switzerland

Panoramic trainD’you remember the BBC film of this name, A Short Stay in Switzerland, a dramatisation of the last days of Dr Anne Turner who developed an incurable degenerative disorder (PSP)? She made the front pages of the papers with her letters to friends and relations to say, ‘By the time you read this I will be dead‘. In January 2006 she travelled to Dignitas to end her life, the day before her 67th birthday, while she was still able to move and voluntarily take the lethal medication. And a report this week says that almost a quarter of terminally ill people who avail themselves of the suicide clinic’s services are from Britain (second only to Germany).

MatterhornWell, I’m grateful to be able to report that my own short stay was of a quite different order. I had eight days to revel in the spectacular scenery, travel on the world famous panoramic trains, listen to the enchanting melody of cow bells in the mountains, and inhale the pure Swiss air, with no sinister intent. All I had to do was soak up the beauty and recharge the batteries. Wonderful.

I did my best not to let the Dignitas issue cast a shadow over my holiday, but of course, books featured. After all, this was real Heidi country, Johanna Spyri was born, lived and wrote in and around the rural area of Hirzel and Zurich, and used Graubünden for the setting of her books – all places I visited. Although Spyri struggled to find a publisher initially, the two Heidi stories went on to become by far the most popular works of Swiss literature: they’ve been translated from German into 50 languages, filmed more than a dozen times, and over 50 million copies have been sold world wide. Swiss pasturesSo evocative were they of the Swiss Alps that the real locations exactly conformed to my childhood mental images.Swiss cows

Switzerland is also the stuff of the Chalet School series by Elinor M Brent-Dyer, another big part of my growing up. Stories of schoolgirls who spoke three languages fluently, whose lives were overshadowed by the sanitorium, and who seemed to grow up to have lots of children also destined for the Chalet School.  Old hardback Chalet School booksI collected most of the hardbacks (secondhand) in my youth, and passed them on to my daughter, who recently completed the set (58 books), paying a good deal more for rare copies than I ever did! Paperback Chalet School booksThe full complement are destined for the next generation. What a lovely legacy. I might even read them again myself some time – this time in the correct order! – and fill in all the gaps.

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Guest blog

I am currently travelling back from Switzerland, so decided it would be a good week for a guest blog. I’ve invited my son, Jonathan, who is himself an avid reader and critic of books, to talk to you this time. Over to him.

I have an amazing inability to remember some things because I refuse to write them down.  However, I do know that at some point in the last year or two, I was reading something in which the question of belief came up, and the answer given was “I believe in books”.  That part stuck in my head, even if the person saying it didn’t.  So what is it about books?  Let me go off on a tangent for a minute, I’ll get back to the question unless I forget that as well.

The imminent arrival of the Edinburgh Book Festival programme is an eagerly awaited day in our family.  We actually have the day marked on the calendar.  For some reason, I get two copies, which is entirely a good thing because there is now one copy for the adults to read and one for the two girls to take away and mark up.  Their approach is to highlight anything by an author they think they’ve heard of, a title that sounds fun or a picture that appeals to them.  We then sift out the events that are for 5 year olds, much older teens and those where they can’t actually remember why they were interested in the first place.  That tends to take care of ninety percent.  My approach to the programme has evolved over the years.  I now go through it very very slowly so I don’t miss anything.  And then do the same again, backwards, and find all the things I missed.  I then forget to book and in a blind panic try to find the programme some days after the booking opened and hope for the best.  Over the course of the next few weeks, I find other people at work asking me if I’m going to so-and-so because it’s something they know I’ll be interested in…and I discover I’ve missed that as well.  It really is pathetic.

One event particularly resonated with me this year (actually, it was three, one of which I didn’t even see until someone else checked that I was going…and I wasn’t… but I’ll stick with the one for now).  Michael Rosen, the only poet we all read together at home because we tend to end up crying with laughter after a few of his poems.  It turns out he also wrote Going on a Bear Hunt.  It also turns out I’m not very good at putting authors’ names with books as I didn’t know those two belonged together until the girls were, well let’s just say it was a good ten years after they had last read the book.  My summary of what I was expecting him to talk about is why books are the most important thing on the planet.  I might be exaggerating a little, and he was in fact somewhat more measured than that, but the power of books can be remarkable (this is me getting back to the question, by the way, I didn’t forget).  A lot of the books I read are just good stories, an insight into someone else’s life, mind or experiences.  Some of course are non-fiction.  And then there are the ones you can’t forget, the ones that help you to see something you knew was there but didn’t want to recognise or acknowledge.

I’ve had a book on my shelf for a good number of years now, By the River Piedra I Sat Down and Cried by Paulo Coelho.  Now, to me he is definitely not the best writer in terms of style or even storytelling.  But sometimes he understands something and tells his stories in a way that can change lives.  The story in this particular book is nothing special really and you could argue that it meanders around sometimes later on.  It’s the story of a man and woman who knew each other when they were younger and then meet up again years later when they have both lived very different lives, even though they are still fairly young.  So far, so nothing special.  But the book – for me – is really all about not giving up on something which is in our hearts, not allowing ourselves to be so rational that we forget that we once had dreams and still do.  Because out there there are enough people telling us what’s sensible, what we should do.  This particular book was one that I knew I would come back to, but only when I was ready to make a change in my life.  I knew that re-reading this one book would be the trigger for making that change, and that there would be no going back.  As Coelho writes,

“You have to take risks, he said.  We will only understand the miracle of life fully when we allow the unexpected to happen.”

And here’s the beauty of words, of stories, of books.  That sentence (and a lot of others in that book) really hit me.  Maybe nobody else will ever have even a similar feeling reading that, but in each book, we find something that we didn’t know or didn’t recognise before.  And the same is true of the person writing the story.  I’m experiencing that at the moment as I work on writing my first novel (let me tell you, it looks easier than it is!).  I find characters saying or doing something that surprises me.  It turns out you can’t control it any more than you can control a conversation with another person because you cannot know what they’re going to say and each word changes how the conversation will develop.

So although I knew that Michael Rosen would probably say nothing that I was expecting him to (despite the fact that I had already imagined the whole event in my imagination), I knew that something special would happen just because there was be a conversation between him and an audience and we were all changed by it.

So I believe in books too.

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Book Festival

Like Joan Bakewell I say with some amazement that ‘Edinburgh’s jamboree will have to fizz without me‘ this year. Yep, for the first time for donkey’s years I have no tickets for the International Book Festival. Nary a one.

Why? Well, various other responsibilities and commitments have swallowed up these two weeks and I simply can’t spread myself any more thinly. I am, of course, a tiny tad disappointed to be missing the excitement of the tented domes of Charlotte Square, and listening to fellow-authors telling of their inner lives and exploits. Oh yes, and those interesting conversations that crop up every year as we wait in queues or compare notes over a coffee. But I confess I’m also aware of a smidgeon of relief that I’m not up writing reviews at all hours for this or anyone else’s blog.

However, I have been festivalling. Yes sir! I’ve taken to the Festival Fringe – the unregulated unofficial part of the programme – big time, in the delightful company of my appreciative guests. For those of you who aren’t aficionados, the Fringe sells over 2 million tickets and attracts over 3000 acts and events; it’s been described as the world’s largest arts festival … and it’s on my doorstep!

On the way between shows, we’ve been taking leisurely strolls through the Old Town, and the craft stalls of the West End … Craft Fair

… pausing to enjoy the street theatre, (even in the teeth of hurricane Bertha one decidedly damp afternoon!).

Levitating alien

Headless man

And wow! were we lucky with our choice of events. Every single one we went to was well worth seeing (it’s a hit and miss experience normally). Particularly impressive were the Saltmine Company‘s production of John Newton – Amazing Grace (relating the story of the slave-trader cum hymn writer through music and drama); and a dramatic telling of Michael Morpurgo‘s 16 year old Private Peaceful looking back at his life on the night before his execution by firing squad. We were all spell-bound.

Both these events were well attended, but some of the others had tiny audiences and yet were excellent performances. Imagine baring your soul about a suicide or depression or loss or hopelessness to an audience of one for a whole hour! But they grit their teeth and do it. I wish them all huge success. After all, that lone listener might just be a top agent or critic. Many a famous name has been discovered in the Fringe.

NB. You may be reading about Edinburgh at Festival time, but I’m actually currently soaking up the incredibly beautiful scenery and pure air of Switzerland … of which more on my return.

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What the papers say

This post should carry a government health warning: If you are quickly bored with facts or allergic to conundrums do not continue with this week’s blog.

I’ve always maintained that the subjects I write about are issues which challenge us as a society; they repeatedly hit the headlines. And this remains the case. To illustrate the point, I decided to monitor the medical ethical challenges that were reported in one newspaper (The Telegraph) for just one week (4-10 August 2014) and share with you what I found. Wow! Even I was bowled over with the sheer volume of material in this category in just seven days.

Please bear in mind as you read, that papers have their own agendas and the facts might not all be correct. However, on this occasion I’m not going to research every issue or attach links or hedge the topics around with qualifiers and alternatives; all these ‘extras’ would detract from my focal point. I’ll simply itemise the issue, and leave you to ask yourself: How would I feel in this situation? What would I do in these circumstances? What should society do? What is fair and just? What are the implications for educating the public, or our limited resources, or competing demands? … Or you can just accept the point if you prefer an easier life!

So … are you sitting comfortably? …

Perusing the newspapers

ASSISTED CONCEPTION

There’s been an outcry against the first national sperm bank (in Birmingham) which openly caters for lesbians and single women who want to start a family without having a relationship with a man.

The ongoing story of Gammy, the baby with Downs Syndrome (discussed in my last post) who was allegedly rejected by his commissioning parents following a surrogate twin  pregnancy, rolled on with almost daily updates unravelling more and more bizarre aspects, bringing the whole question of surrogacy under the spotlight.

A Japanese businessman is said to have fathered nine babies during the past two years using Thai surrogate mothers. Seven nannies have been hired to care for them. Reports vary as to his motives: from ‘he wanted a big family for himself’, to ‘he’s part of a child trafficking ring’.

ASSISTED DYING

Former teacher, Dawn Faizey Webster, has been in a locked-in state following a stroke at the age of 30, two weeks after giving birth to her son. She was featured this week completing a university degree 12 years later, by blinking using a laptop that translates her eye movements into text. And yet other people in a similar state are pleading for assisted dying because life is intolerable.

MATERNAL v FETAL RIGHTS

Women who drink alcohol during pregnancy slow the development of their children’s brains, reported researchers in Los Angeles. They compared the brains of children with fetal alcohol spectrum disorders and unaffected children over a period of two years.

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DEMENTIA

Saga conducted a survey of the over 50s and found that far more are afraid of developing dementia than cancer.

A study of 1658 Americans aged 65 and over has found that a severe lack of vitamin D appears to more than double the risk of dementia. But hey, the winter sun in the UK is too weak to generate adequate vitamin levels and older skin is less efficient at doing so. Cue salmon, tuna, mackerel and fortified foods etc etc etc.

A report from the Centre for Economics and Business Research has estimated that the number of people who are forced to retire early because they have (or a loved one has) dementia will double within 15 years.

PERSONAL LIBERTY v PUBLIC SAFETY

Several Britons have been quarantined over fears of the Ebola virus entering this country. It’s alleged that certain ‘special’ patients have been given specific experimental untested drugs to good effect which are not available to others.

MENTAL HEALTH

A nationwide survey of people with bipolar disorder, their carers and the professionals who treat them, is about to begin in this country. The researchers say it’s too often the case that other people remote from the sharp end are the ones who influence research expenditure; they want to remedy this. Critics question the morality of including people with mental illnesses.

A teenage girl in Merseyside took her own life after visiting pro-anorexia websites and self-harming.

ORGAN DONATION

A 24 year old, Stephanie Reynolds, has launched an appeal for a kidney for her mother via Facebook. Thousands of strangers from around the world have offered to be tested to see if they are compatible as potential donors. Her mother, Elaine, has an autoimmune element which means she cannot have an organ from a blood relation. The odds of finding a match are less than one in 10,000. Hence Stephanie’s Facebook appeal. Apparently such appeals have been successful in the USA.

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PUBLIC HEALTH and LIFE STYLE CHOICES

Grizzly bears gorge themselves and become obese prior to hibernation but they don’t get diabetes. Scientists are asking: Could this offer a clue for treating humans?

A report in Annals of Oncology has stated that if everyone between 50 and 64 took a low dose aspirin daily for 10 years it would prevent 6518 cancer deaths each year and 474 fatal heart attacks. But the price would include an extra 896 deaths per annum from strokes and stomach bleeds. (Hmmmm. This one affects me personally. Some years ago, taking that small prophylactic dose for only six months triggered lymphocytic colitis which has plagued me ever since. So I wouldn’t myself describe it as poetically as Christopher Howse: ‘Aspirins are the vanilla cynosure of the rattling world of pills; unsparkling but attractive, like pearls’. Not in my book, matey! Sorry, I digress.)

It seems that prostate cancer screening could save more lives than programmes to detect breast cancer – so says a European study of 162,000 men from 8 countries. That would mean saving around 2300 lives per annum in the UK. And yet … the research has concluded that such screening should not be introduced. Why?  Because a high level of over-diagnosis (resulting from the unreliable PSA test) would mean thousands of men going through needless treatment and ending up with incontinence or impotence.

RESOURCE ISSUES

A staffing agency, Prestige Nursing + Care, has issued new figures which indicate that pensioners’ incomes have fallen further behind the cost of care homes. This is adding to the pressure on NHS hospitals and putting vulnerable elderly people in danger. Also the number of people receiving home adaptations has fallen by 12% since 2010, heightening the risk and incidence of falls and injuries.

A report, The Future of Loneliness, has predicted that hundreds of thousands of pensioners will be all but cut off from services, shops and their local communities within 15 years because of the rise in the use of the internet. The result will be a hugely inflated risk of loneliness, already a worrying aspect of old age.

A ‘wonder drug’, metformin, normally used to treat diabetes, has been found to increase the life expectancy of patients with other conditions such as cancer and cardiovascular disease. This could mean an extra two and a half – three years for today’s 65 year olds. What’s more it only costs 10p a day. But hey, we’re already struggling with the problems of an aging society …

The National Institute for Health and Care Excellence has decided that a revolutionary drug, Kadcyla, that is said to give women with advanced breast cancer an extra six months of life, will not be available on the NHS because it is too expensive, even after the manufacturers have offered a discount. Countries elsewhere in Europe fund it. Ahhh, the old chestnut: if you look at the individual cases, doesn’t every family want to hang on to their loved ones for as long as possible? – well, most families anyway. But add up all those astronomical bills and balance them against only a few more weeks of life and set that against all the other treatments competing for the limited pot of money, and the perspective looks different.

Researchers at Imperial College have found that injecting a patient’s CD34+ stem cells into their brain following a stroke encourages tissue repair and may save them from death or severe disability. However, an expert has said these improvements could just be due to chance or the special care this small safety trial has provided for a tiny number of patients.

FAILURES IN CARE

The Care Quality Commission has admitted that at least 750 homes providing care for the elderly and disabled have been failing to attain at least one basic standard for more than a year. Why? Because the CGC feared legal threats from the owners of the homes. As a result vulnerable people have been knowingly put at risk. The CQC say that a new regime is being introduced to make protection much more robust.

Official statistics on NHS waiting times have revealed that the number of patients forced to queue in ambulances outside A&E departments has almost doubled in three years. In addition, over 3 million people are now on waiting lists for operations – a rise of 700,000 compared with 2010 figures.

Phew! As you can see, I shall never run out of triggers for new novels! I’m constantly thinking, What if ……?

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Perfection

Did you follow the Glasgow 2014 Commonwealth Games, I wonder? I dipped in and out, marvelling all the while at the stunning abilities of these top athletes – their skill and stamina and flexibility and sportsmanship.

The real highlight for me, though, was the diving in Edinburgh. Watching Tom Daley somersaulting from the highest board, executing perfect twists and turns, entering the water so cleanly that the surface was barely disturbed, left me breathless (and anxious!). And the 14 year old Matthew Dixon; how did he feel perching on the very edge of that board 10 metres up the very first time he tried it? How did his mother feel with his hurtling brain so close to that unforgiving concrete? My heart was in my mouth, never mind hers! (Even the more experienced Daley says: ‘When you look down, your knees go weak, your legs turn to jelly and it’s terrifying.’) And then there’s the synchronised diving. How two people can execute identical moves simultaneously during that brief and rapid descent, is beyond my comprehension. This is surely a kind of perfection writ large.

Perfection, ahhh – that brings me to this week’s story of the baby born to a Thai surrogate mother, who has allegedly been abandoned by his would-be parents because he isn’t perfect. Baby Gammy has Downs Syndrome and other co-morbidities. Of course, we don’t know the minds of any of these characters; we only know what the media tell us, and some sources cast serious doubts on the authenticity of this account and the credentials of those most concerned. Double TroubleBut picture the scenario from the point of view of the commissioning couple: instead of a beautiful healthy child to bring up and launch into the world, the prospect of a short and difficult life for their baby, and the grief of losing him. This wasn’t what they signed up for. The story is that they have elected instead to take Gammy’s healthy girl twin, and to leave the damaged baby behind. (They themselves are variously reported to have asked for Gammy to be aborted, or to have said they were only offered the one, or to have been informed that Gammy had only a day to live and his mother wanted him to be buried in Thailand.) So what of the surrogate mother? The papers report that she has rejected all offers from other couples to adopt her son and intends keeping him and loving him for as long as she has him. Apparently thousands of well-wishers around the world have begun donating money online to enable this impoverished woman to do just that. Whatever the truth really is, this difficult story has highlighted some of the many ethical issues associated with surrogacy. I’ve had an ongoing interest in this topic ever since I researched it for my novel, Double Trouble, but what do you think of the rights and wrongs of this case?

The Behaviour of MothsIt was entirely by chance that this week I read The Behaviour of Moths by Poppy Adams – which was given to me by friends who came to stay a couple of weeks ago – and found that it also includes a surrogate pregnancy. It’s a most unusual story and it wasn’t until P126 that I began to understand why they chose it for me; and not until P155 that all really became clear. After that I was glued to it. I don’t want to spoil the dramatic tension for you, so I’ll simply say that it tells the story of two sisters brought up by eccentric parents in a rambling Dorset mansion. The elder girl, Virginia/Ginny, becomes apprentice to her semi-detached father who is a reputable and dedicated lepidopterist. Together they hunt and study every kind of moth they can find, conducting experiments on them, researching their behaviours, amassing a formidable laboratory and collection.

The story begins with Ginny watching from the first floor for the arrival of her ‘little sister’, Vivien/Vivi, returning after decades of absence. Through the lens of Ginny’s peculiar take on life, it recounts each day of one week in their lives when they meet, as old women, one last time. Slowly, gradually, subtly, we piece together their experiences, feelings and differences as they re-live their childhood, and try to resolve the legacy of the past and the accumulated burden of their emotions. And yet … well, how much of this can we really believe? From the time Vivi falls out of the bell-tower and is nearly killed, it’s like a collapsing column of dominoes, each one nudging the next towards an inexorable conclusion. The Behaviour of Moths is a haunting tale, and I’d love to have a one-to-one chat with the author about her thinking, especially about the character Ginny; I’m not at all sure I have understood her correctly.

But to return to the topic of perfection, at one point in the book, Arthur, a troubled young father says: ‘You can’t choose your children. You can’t take the best ones, the ones that survive, the ones that are born the right colour. If you decide to have that child you must take it, whatever happens. You must claim him.’  When things go wrong, the surrogate mother concludes, ‘If it survived it was hers; if it died, it was for me to mourn.’

Uncanny, huh? It could have been written with the Thai family, and the Australian commissioning couple, and baby Gammy in 2014, in mind. And yet this was published in 2008. And is fictitious.

Speaking of perfection … the lilies in our garden are blooming in profusion right now. We have massive banks of them in the house and still a proliferation in the flower beds. Now there’s perfection of a different order, huh?

White lily

Yellow lily

Spotted lily

Red lily

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Please do not disturb

Today’s blog is for all you folk out there who asked for an insight into the everyday life of a jobbing writer. Yep, you know who you are. So relax; no challenging issues or troubling conundrums this week.

It has been absolutely roasting hot up here at night as well as by day, so sleep has been rather elusive. But hey, that’s had positive consequences. The old brain has had extra time to whir along, sorting, sifting, coming up with new ideas for the current book. Because yes, after the enforced break from serious writing to fulfill other responsibilities, I’m once more back in harness.  And better still, the story has now picked up a momentum of its own.

TypingOK, I created the characters originally, but they have now acquired birth certificates – passports even – of their own, and I’m simply taking dictation from them at a cracking pace. Watching and listening, wondering and exclaiming, as they go about their business and make decisions and interact. Smoke is leaking under the door of my study. Inside, the old word count is growing in a most gratifying way. I am not to be disturbed!

As you know I don’t do formulaic – against my principles. But aside from that, this book is completely different from all the others in several ways which is keeping me on my toes: Have I got the balance right? Will this be easily promoted? Is it clear what I’m trying to do? Are my characters distinctive enough? Its working title has already changed three times, which says something about the take-over bid Tonya, India and Chris have waged against me (it’s a three narrator story). They’ve hauled me into colourful and troubling situations already that require me to really think about my own values and prejudices and preconceptions. (Very good for the soul, a spot of heart-searching!) And enough to keep me awake irrespective of the temperature.

I never divulge details of a story whilst it’s in the development stage but I don’t think I’d be jinxing anything if I let you know that I’ve steered away from a concentration on anorexia to a much broader look at body image issues. And boy, has that opened up a can of worms – several actually! Whereas I was a bit ambivalent, now I’m getting excited about where this is taking me. I want to know what happens!

I really must get back to watching teenage India grappling with her deep-seated angst …

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Assisted life or assisted death, that is the question

Dr Ann McPherson was a committed and energetic GP who made a mark in many spheres of her life. But she felt burdened by her powerlessness to help those of her patients who were terminally ill and suffering beyond their endurance. As a consequence she became an ardent campaigner for a change in the law. When she herself developed pancreatic cancer she knew all too well what lay ahead, but in spite of her own troubles she continued her crusade for as long as her strength allowed. When the disease overwhelmed her, she was forced to endure a horrible death – exactly the kind of end she wanted to spare others from.

Her daughter has courageously shared her story in the BMJ this month, and I found it a most eloquent and persuasive one. She spares few details is recounting the horror. This was indeed the kind of distressing death we would all dread.

Photo courtesy of Photolia

Photo courtesy of Photolia

In the same journal at the beginning of July, an editorial called for doctors to stop opposing assisted dying, and rather adopt a position of ‘studied neutrality’ – not apathy, please note, but neutrality – to accommodate the many different points of view doctors hold. The papers include emotional appeals to society to embrace the old and the disabled instead of thinking of killing them; to value choice as an inherent right; to start properly talking about death …

Ultimately however, this is a matter for parliament not doctors, powerful though they may be, to decide. And indeed Lord Falconer’s Bill designed to open the way to a form of assisted suicide in Britain, had it’s first full parliamentary airing last Friday. The House of Lords was packed; over a hundred members queued up to speak; eloquent appeals were heard without interruption. News items, articles, columns, letters – you’d have to be an ostrich to have missed the subject over the last week or two.

So it’s probably not surprising that lots of people have asked me what I think about the subject. In my novels I work hard to give equal weight to all lines of reasoning and not to betray my own opinion. Right to DieNow, six years after the publication of Right to Die (my own book on this subject), it seems expedient to declare my hand. But first I should say that in spite of my close involvement in this area, I can still be persuaded by the strong arguments on both sides. Emotional firsthand stories still grab me by the throat. I am very far from black and white, I still swither. Indeed, as soon as I’ve posted this, I’m sure I shall read or hear something that will make me wonder all over again. I’d welcome any genuine comment which would point up errors in my thinking. Or indeed any other thoughts on this issue which would contribute to healthy, measured debate.

So, where do I stand? First I should state the problem as I see it: intractable pain and suffering, indignity and distress as features of dying or living with degenerative or totally incapacitating diseases. OK, I know the current Bill is addressing only terminal illness (within 6 months of death – a diagnosis that’s impossible to make with certainty, incidentally), but I want to gather in those who have longer-lasting problems too, who in my opinion, often have a stronger case for seeking a way out of their terrible situation. (I’m not operating under the same constraints as Lord Falconer and his cronies.)

I should hasten to reassure you at this point that I have no intention of rehearsing the arguments or regurgitating the emotive phrases wheeled out by both sides in relation to this current Bill; you’ll be as familiar with them (perhaps even wearied of them?) as I. Rather I want to propose a two stage process.

In the first instance, my appeal to parliamentarians would not be to change the law, but to re-allocate resources. What I’m going to say now may sound utopian, but it’s my view that everyone – absolutely everyone – suffering from a terminal or degenerative illness, should have full access to excellent palliative care of the highest order including, where appropriate, proper psychiatric involvement to eliminate treatable problems like depression or anxiety. At the moment this is very far from the case (even though Britain is recognised as a world leader in this field of medicine). Ask yourself: What kind of a society knowingly condemns some of its most vulnerable citizens to a form of torture, when an alternative is available? It seems to me iniquitous that even established successful hospices are reliant on public financial support to keep going. And that only a tiny fraction of patients who desperately need their services get them.

I would maintain that simply being comfortable and being listened to can change one’s whole perspective on life, no matter how short or long that life might be. So, if pain and distress are capable of amelioration, they should be treated swiftly and effectively. What a different scenario we would have from the outset if that were everyone’s right.

Once this first provision is made, there would be a much smaller number of people for whom life is a prospect worse than death: those for whom palliative care does not offer a solution. And I know only too well that not all pain, not all distressing symptoms, can be relieved: it’s naive to think they can. I would keep these remaining cases well away from media scrutiny (with its attendant risks of vitriol and vilification for those at the heart of these situations). Instead I would propose a system whereby cases could be brought to a kind of Ombuds-committee made up of representatives from the main relevant disciplines who could, with compassion, empathy and experience, in private, help all concerned come to a conclusion which would be the optimal one in these circumstances. And to do so with all speed.

The necessity to go through this process would, it seems to me, go some way towards protecting the vulnerable from vultures and undue pressure to act against their own best interests (one of the biggest worries with the Falconer Bill). And to facilitate this it would be hugely advantageous if Advanced Directives were to become the norm: people spelling out their beliefs and wishes clearly and rationally while they are in complete control mentally.

There would still, of course, need to be careful scrutiny of the legal limits and responsibilities. Doctors should not be required to take risks or actions which are against their consciences or without legal backing. Patients should not be obliged to spend their last days, weeks, months or years battling officialdom. Relatives should not be fearful of dire consequences. Adequate legal provision would have to be made. But in my view it is almost impossible for the blunderbuss that is the law to properly take account of the fine nuances involved in these cases on its own, and to create a catch-all law. Furthermore, at the moment I do not think the Falconer Bill is accurately addressing the real dilemma.

All the Bills drafted to date, all the tragic cases paraded for public scrutiny, all the  discussions linked with them, have forced society to address the issues, to look squarely at the problem. And indeed, surveys show that we as a nation are much more sympathetic to the realities faced by these families than we were a decade ago. Now though, we need a mature and measured response that fully takes account of the things we all dread, and moves us to change our ways. To recognise the importance of good palliative care – not only to value it but to put our money where our mouths are. To respond sympathetically to the urgent needs of those people for whom life even with optimal care is intolerable. For those with fierce intractable scruples to ask: what right have I to impose appalling suffering on others who do not share my personal view or scruples?

Shutterstock image

Shutterstock image

Hmmm. I’m feeling rather vulnerable myself stating my views so forthrightly.

What do YOU think?

 

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