Heart to heart (3)

In part three of ‘Heart to heart’, Sean O’Shea concludes his account of his journey through the NHS, and describes some of the lessons he has learned.

Margaret: You’ve got a whole new life ahead of you Victor. I mean, you’ve hardly started – got it all still to come.

Victor: [Head in hands] I know. That’s what scares me.

 -One Foot in the Grave

Ten months ago I developed a heart problem, one of the symptoms of which was arrhythmia. The diagnosis was uncertain, I was put on several tablets and subsequently have attended for a variety of tests. I was eventually admitted for a cardiac ablation which was one of the operations I needed, but I had to wait six months during which time the quality of my life plummeted.

I like the word ablation. Amongst its dictionary meanings are:  the surgical removal of body tissue and the removal of snow from an iceberg by melting or evaporation. For me the word evokes a sense of cleansing and reparation. It was explained to me in lay terms as involving the decommissioning of some erratic electric circuits linked to the heart which can trigger arrhythmia.

As I was prepared for the procedure I made light banter with the surgeon. I enquired if there was any operation that could ablate the illusions which beguile the heart as well as its damaged tissue. But he replied that he preferred not to meddle in other departments, and was content to leave the vicissitudes of a patient’s emotional life to the psychiatrists.

I disclosed that I was an occasional though irascible meditator, who lacked much of the sense of equanimity normally achieved by more dedicated practitioners, so I would appreciate the maximum sedation. I also confided that I had not had a drink in several months, and for a person who for forty years was reliant on its sedative effects in blunting reality’s more jagged edges, being on the dry was something of a shock to both heart and mind.

He informed me that the sedation I was to be given was good stuff and he’d even tested it on himself so there would be no worries. I replied that I hoped he had not sampled any on that particular morning. He said that he had nothing other than a black coffee for breakfast so I was in safe hands. The nurse Emily gave me further assurance by saying that if I experienced acute pain just to raise my right hand and she’d sort me out. I thanked her and responded:

O gentle sleep!
Nature’s soft nurse, how have I frighted thee,
That thou no more wilt weigh my eyelids down
And steep my senses in forgetfulness?

Henry IV, W Shakespeare

I recall Emily’s smile of amusement at my sleepy poetic offerings. Thereafter on the few occasions I experienced acute pain in my chest I raised my hand and in a while the pain subsided so presumably Emily was pressing the right buttons. I recall thinking that I wouldn’t mind being gently eased in a morphine induced daze into permanent oblivion, and thereby released from the wheel of Samsara. Beyond that I had little recollection of events.

The procedure worked and I was restored to a normal sinus rhythm. Unfortunately however ‘normality’ lasted only two weeks and after that my heart resumed its enervating erratic dance. So, I wait again to be advised by the cardiologist on the next step while reminding myself that: Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security – John Allan Paulos.

A swirling vortex of emotions

It has been a challenging time both for myself and those who care for me. I have felt burdened and burdensome. Relationships have been tested and strained as I found myself metamorphosing into Victor Meldrew. I lost three stone in weight, and I would look at my gaunt outline in the mirror and wonder who it was that was looking back at me.

Pain and its daily modulations became an abiding preoccupation. But it’s not a very interesting or engaging topic of conversation. For stretches of time my horizon has been limited to monitoring my blood pressure, tracking the pain, ticking off the tablets I’d taken, listening to Radio 4, visits to kitchen and bathroom – and bed. On some days I would surrender to the wish to remain in bed and not bother to get up except for the toilet. I have been chronically fatigued, often morbid in my thoughts and occasionally felt persecuted by the NHS. This institution seemed literally ‘under my skin’, poisoning me and sapping my life force with its toxic meds. However it has also been keeping me alive.

My loss of vitality and sense of control over my life has been debilitating, and the loss of taken-for-granted capacities has forced confrontation with other losses, both past and impending, both real and illusory. I’ve experienced a pervading sense of vulnerability and mortality. Will I have any friends left who are willing to hang around when I’ve become Victor Meldrew, I have wondered apprehensively.  In the midst of this swirling vortex of emotions remaining grounded has required conscious and repeated effort.

Problems with the NHS

The NHS is bedevilled by funding crises, fragmentation, bureaucracy, continuing privatisation, over-reliance on medication, and the relative neglect of preventative strategies such as full checkups as routine to aid early identification of illness.

My own journey through its corridors has taken me through gastroenterology, urology, oncology as well as cardiology. And even within cardiology there are further divisions between for example the section that specialises in the heart’s ‘plumbing’ and that which concentrates on its ‘electrics’. These different sectors don’t always communicate well with each other, and it’s easy to get snagged up in the system. Notions of the whole person or wholistic medicine seem very remote as one tries to negotiate one’s way through this segmentalised world.

The side effects of the medication have at times felt more disabling than the disease they were meant to address. But doctors may minimise the likelihood of such effects, tend to prefer a wait-and-see policy, and can be irritated by patients who appear ‘anxious’ about the possible toxic consequences of the drugs they prescribe.

Doctors may feel threatened by patients who are informed or assertive, and some still seem to prefer the traditional parent-child style of relationship. I was fortunate enough to have a GP who was comfortable with a more symmetrical relationship but if you aren’t so fortunate you may wish to consider changing your GP. Some doctors and nurses were brusque in their manner but by and large I was treated with skill, kindness and generosity by NHS personnel.

Yet for all its flaws the NHS really is one of the few remaining institutions worth defending. But judging from press headlines the outlook looks bleak. There is the belief among some ‘experts’ that growing demands particularly the rising numbers of frail elderly with chronic illnesses is making the system unsustainable. Longer waiting times to see a GP and for diagnostic tests are predicted, and patients may be forced to pay for at least some services in the not too distant future, in spite of assurances from politicians that the service will remain ‘free at the point of delivery’. One tenth of surgeries are already privately owned and multi-million pound contracts have been given to the likes of Serco and Virgin. This in spite of the fact that there is little evidence that private companies provide low-cost more efficient services.  Hospital cleaning is a well-documented example. It has led to lower hygiene standards, higher rates of hospital-acquired infections and casualisation of the workforce.

Little short of major structural change in the distribution of wealth and power in society, as well as the organisation’s mode of governance, would seem be required to reverse this trend. Only then might we feel fully assured that an adequately resourced and publically accountable NHS might evolve to meet the many challenges ahead. But is there a national political party that would risk such a policy, and if so would they ever gain power?

Some tips

As to my personal experience I’ve learned that you do need to be assertive – even at a time when you’re least likely to feel strong – to ensure that the bureaucratic machine keeps ticking over and that you aren’t lost or forgotten in the system. This includes chasing up appointments. If you don’t you may find yourself waiting interminably in a waiting list administrator’s in-tray. It’s also wise to research your illness on the internet, insist on copies of reports and check information for accuracy.

Medication can be a particular issue. There are those who just take the prescribed medication and trust that all will be well. Perhaps that works for some. However, I would recommend that you take the trouble of checking up on side effects and potential drug interactions using the MHRA (Medical and Healthcare Products Regulatory Agency) website. And if appropriate raise your concerns with your GP – even if it does annoy them.

Of Eros and of dust

During one of my short daily walks I sat on the East Cliff gazing out to sea and remembering acquaintances, friends and family members who have passed on. I reflected on the mystery of human suffering many reminders of which I have witnessed these past months on my frequent journeys to hospital or as I waited at the surgery. I have been impressed by the courage and good humour which some people manage to bring to bear on desperate situations. When you are preoccupied with your own troubles it can be helpful and humbling to witness the circumstances and struggles of others who may be coping with much more distressing or disabling illnesses. A sense of perspective is restored.

Anyway, on such occasions snatches of poetry come to mind and on this particular day it was the words of W H Auden’s poem ‘September 1939’  that reverberated in my memory. The poem was written just as the German troops invaded Poland and began the Second World War. In New York amongst the ‘blind skyscrapers’ there was little awareness of the terrors that were about to unfold. The poet sits alone in a dive on 52nd Street describing himself as ‘uncertain and afraid, as the clever hopes expire off a low dishonest decade’. Yet he remains hopeful…

Defenceless under the night
Our world in stupor lies;
Yet, dotted everywhere,
Ironic points of light
Flash out wherever the Just
Exchange their messages:
May I, composed like them
Of Eros and of dust,
Beleaguered by the same
Negation and despair,
Show an affirming flame.

I’ve lived long enough to understand why the poet speaks of Eros and of dust in the same breath, and why Freud – who just happened to die in September 1939 – anticipated the poet’s insight by referring to the act of love as a little death – la petite mort. I would hesitate to number myself among ‘the just’ but I still believe in lighting candles. After all it takes only the one to dispel the dark…

SOS July 2014

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