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Jenny Diski – ‘Another’ Cancer Diary?

September 11, 2014 //
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The first instalment of Jenny Diski’s reflections on her recent cancer diagnosis has appeared in The London Review of Books (http://www.lrb.co.uk/v36/n17/jenny-diski/a-diagnosis).

It is essential reading.

I have always loved Diski’s writing (Skating to Antartica particularly). I read the current article – ‘A Diagnosis’ – with sadness, but also with joy. It is vitally Diski – funny, brave and real – and I am grateful that when faced with the challenge of dealing with her recent cancer diagnosis, she decided to share her experience.

She asks the question:

‘A fucking cancer diary? Another fucking cancer diary… Can there possibly be anything new to add?’

Yes. Diaries afford the possibility of witnessing the experiences of others, and although experiences may overlap and share some similarities, each individual one is unique and invaluable as a direct result of its very subjectivity. Thus, each personal experience is by definition original and irreproducible. The value of reporting such experiences is that, although we cannot truly share them, as invited readers we can listen, witness and hopefully affirm the living of another. Michael Palin speaks of diaries as the antidote of hindsight. Which they are, and as the nearest expression we can get to the possibility of understanding what it might be to exist in someone else’s shoes, they can be the most invaluable and authentic of literary forms.

Especially from Jenny Diski’s pen.

‘The future flashed before my eyes in all its pre-ordained banality. Embarrassment, at first, to the exclusion of all other feelings. But embarrassment curled at the edges with a weariness, the sort that comes over you when you are set on a track by something outside your control, and which, although it is not your experience, is so known in all its cultural forms that you could unscrew the cap of the pen in your hand and jot down in the notebook on your lap every single thing that will happen and everything that will be felt for the foreseeable future.’

The ‘Onc Doc’ slipped in at the outset that the goal was ‘to treat, not to cure’. It is salutary to consider both what is often said and what is mostly unspoken during this most critical of person-to-person interactions. Raymond Carver’s poem on the same topic of cancer diagnosis comes to mind:

What The Doctor Said

He said it doesn’t look good
he said it looks bad in fact real bad
he said I counted thirty-two of them on one lung before
I quit counting them…

… and he said something else
I didn’t catch and not knowing what else to do
and not  wanting him to have to repeat it
and me to have to fully digest it
I just looked at him
for a minute and he looked back it was then
I jumped up and shook hands with this man who’d just given me
something no one else on earth had ever given me
I may have even thanked him habit being so strong

 

Diski also reflects on the doctor/patient relationship:

‘It’s quite hard to rapidly absorb the notion that someone forecasting your fairly imminent death might not be your enemy.’

‘Sullen rudeness is a possible option handed to us cancerees.’

She considers the language used. When given a prognosis of ‘two-to-three-years’, what is actually being said? Is ‘Onc Doc’ favouring 2, or 3, with the extra year tagged on as a hopeful gesture? What does this timeframe meaningfully equate to in terms of how we normally live our lives:

‘Will the battery on the TV remote run out first?’

Suddenly thrown into another sphere, that of the ‘Cancer World’, Diski contemplates the role she may now be forced to play:

‘I am and have always been embarrassed by all social rituals that require me to participate in a predetermined script’.

‘Now I was faced with the prospect of a rather lengthy (in one view) public/private performance by which to be excruciated.’

She rejects metaphors of attack, and refuses to personify the cancer cells in her body:

‘Under no circumstances is anyone to say that I lost a battle with cancer. Or that I bore it bravely. I am not fighting, losing, winning or bearing.’

In the face of her diagnosis and all its inherent challenges, Diski answers her own question ‘why another cancer diary’. She is a writer. It is what she does.

‘So I’ve got cancer. I’m writing.’

 

CQ

 

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Categories Cancer, Death and Dying, Doctors, Illness

‘How To Be Immortal’ – drama based on the HeLa story

February 5, 2014 //
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‘A true tale of love, death and DNA’

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I saw this affecting work last night at Jackson’s Lane Theatre, North London. The Penny Dreadful production is currently on a UK National tour. The play is a profoundly thought-provoking piece, which directly challenges us to consider issues around mortality, immortality, and the ultimate question of what happens to us when we die.

Do we cease to be at that point?

The Henrietta Lack story encourages a consideration of this question. Lacks died as a result of cervical cancer in 1951, at the age of 31. However, the cells from her aggressive cancer, known as HeLa and which contain all the DNA that constituted Lack’s genetic make-up, continue to survive and to replicate in laboratory conditions, producing the first ever ‘immortal cell line’. Despite the dubious ethical issues that surround the original procurement of Lack’s cells (her children were never told, and Lack’s cells were public property until 2013), research based on HeLa has been directly responsible for the development of treatments for conditions such as AIDs, cancer, cystic fibrosis and vaccines, and many more. HeLa cells have also provided the foundation for mapping the human genome.

How To Be Immortal interweaves three true stories: Henrietta Lack’s own story and that of Dr Gey and his wife who ‘discovered’ HeLa in 1951, the story that Lack’s daughter Deborah (1996) was born into (she was a baby when her mother died) but only discovered later in life, and the contemporary narrative of Rosa and Mick. Mick, similar Lack, also has a rare and aggressive type of cancer, from which he dies. The issue of research, using cells from his tumour – this time with consent – is presented to the distraught Rosa. She agrees, and the outcome leads to a healing of sorts. Deborah also seems to experience a coming-to-terms with her mother’s death, and with its aftermath

I applaud the blend of science and of the essence of humanness, particularly its essential vulnerability, that How To Be Immortal successfully balances to create a living performance that raises questions it does not necessarily set out to answer. It is our job, the audience, to consider what has been presented to us:

Who and what are we, and does our ‘make-up’ extend beyond our DNA?

When we die, what do we leave behind? A contribution to some genetic pool, or memories, that may only remain until the death of the last remembering person?

Unanswerable questions, perhaps, but worthy of reflection…

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Categories Bereavement, Cancer, Death and Dying, Doctors, Families, Grief, Illness, Medicine, Memory, Science, Stories, Theatre

Amygdala @The Print Room…

December 3, 2013 //
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I have seen such great theatre in London of late, tonight absolutely included.

I rarely go to large venues these days, instead loving the intimacy that smaller theatres offer and so often deliver.

This is probably my third or fourth time at The Print Room, and as a space to visit I love it more each time. Within the building I have been entertained in different ‘rooms’ on different occasions. Tonight, we were treated to a glass of wine in a little candlelit ante room (with piano), before moving up (narrow) stairs to the performance.

The play was performed within a relatively narrow rectangular space. There are three performers, Catherine, Joshua and Simon, all of whom are present for the 90 minute or so duration of the piece. The actors were uniformly really impressive.

Simon is a psychiatrist – of the ‘old’ school, a ‘pedantic piece of shit’ as named by Joshua – who is simultaneously seeing/treating both Catherine and Joshua.

Catherine has amnesia. Simon, who has become ‘bored by suffering’, is nonetheless interested in Catherine and her psychiatric state. His goal is to ‘remove the plaster’, thereby liberating her memory. The amygdala of the play’s title is the part of the brain that has come to be viewed as the centre of emotional memory.

The story that predated Catherine’s amnesia gradually unfolds. Catherine is a middle class lawyer who lives in Hampstead with her French lawyer husband, who seems to spend more time in Paris than in London, and their two young children. Joshua’s life rests at the other end of the spectrum, as a musician (saxophone) who takes the bus rather than black cabs, and who lives a life devoid of books. Yet, a series of (seemingly) chance encounters brings Catherine and Joshua together.

As Simon works on removing Catherine’s ‘plaster’, the traumatic and tragic story behind her memory loss is revealed. Many themes and threads pervade this short work of art, all of which weave together to create a story of humanness with all its inherent and inevitable flaws, frailties and vulnerabilities.

All three characters, most especially Simon and Catherine, are alone, lonely and vulnerable. Inside, but most especially outside the courtroom, truth is questioned and sought. Amygdala is a story of need and of desire, and of the reality and consequences of love, and the living of it, that is both beautiful and tragic.

CQ

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Categories Art & Suffering, Doctors, Loneliness, Loss, Love, Psychiatry, Stories, Suffering

“Do you know who I am?”…

November 28, 2013 //
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…which is a quote from Anna Quindlen, the Pulitzer Prize winning journalist, novelist and essayist.

But her question does not in any way relate to her hugely impressive CV and achievements. Rather, it stems from her encounters with healthcare professionals, which has prompted her reflections on the extent to which she was seen as an individual in that context, as a person rather than as ‘just another patient’.

The writer was recently invited to deliver the Humanism in Medicine lecture at the Association of American Medical Colleges (AAMC) annual meeting (http://humanizingmedicine.org/anna-quindlen-advises-physicians/).

Quindlen’s question – “Do you know who I am?” – arose from her experience of two separate medical encounters, both involving anaesthesiologists. The first was patronising (my judgement call), and left her doubtful as to whether he knew anything about her or about her previous history.

The second encounter was a positive one:

“Only a short interchange, yet in some fashion she knew who I was.”

Quindlen continues:

“And I assume she was at least as busy as her male colleagues.”

But gender distinctions are not the point. Instead, what Quindlen wants to get across is that she felt ‘seen’ by one professional, and not by the other.

“She was professional, and she was kind. Oh, what a combination that is in what often seems like a cold and inhuman world.”

Quindlen sees the problems in health care – patients feeling ignored, isolated, patronised – as part of a larger societal problem. Power relationships wherever they occur, and which too often underlie the doctor-patient encounter, ‘foment fear and mistrust and alienation’. She speaks of the ‘MDeity’, doctors as little gods, and is surprised how pervasive this remains, despite huge technological and other advances.

Quindlen’s conclusion is that in the end, the person – the patient, the sufferer – seeks and needs ‘the human touch’, to be seen as an individual, and to be considered as such.

She ends with advice for the doctors she addresses:

  • Try to be present in the moment
  • Acknowledge uncertainty
  • Practice empathy
  • Try to be kind

CQ

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Categories Doctors, Illness, Kindness, Medicine, Suffering

Poetry and the ‘Patient-Doctor Relationship’…

November 26, 2013 //
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I have been thinking about this most unique of relationships, partly in the wake of Medicine Unboxed 2013, and also as I am currently writing chapters for a book on Illness and the Arts.

Jonathon Tomlinson has written a very comprehensive and insightful essay on the notion of the ‘patient’ (http://abetternhs.wordpress/2012/04/09/whats-in-a-name/).

Here, I just want to draw attention to words from those who have expressed their experience of the patient-doctor through their poetry.

Firstly, Raymond Carver, who died as a result of lung cancer, and his poem What the Doctor Said:

‘He said it doesn’t look good

he said it looks bad in fact real bad

he said I counted thirty-two of them on one lung before

I quit counting them…’

Later in the poem:

‘he said I am real sorry he said

I wish I had some other kind of news to give you’

Carver concludes:

‘I just looked at him

for a minute and he looked back and it was then

I jumped up and shook hands with this man who’d just given me

something no one else on earth had ever given me

I may even have thanked him habit being so strong’

This is one of my all time favourite poems. It manages to say so much with so few words – the essence of poetry itself – and within 23 short lines the poem delivers such a strong sense of what the sufferer was experiencing at the ‘other side’ of the desk.

Secondly, to another poet who died as a result of cancer, Julia Darling. The anthology The Poetry Cure, which she edited with Cynthia Fuller, contains much to enlighten those who wish to gain insight into the suffering of illness.

In her poem Too Heavy, Darling directly addresses the medical profession:

‘Dear Doctor,

I am writing to complain about these words

you have given me, that I carry in my bag

lymphatic, nodal, progressive, metastatic…’

‘…And then you say

Where are your words Mrs Patient?

What have you done with your words?

Or worse, you give me that dewy look

Poor Mrs Patient has lost all her words, but shush,

don’t upset her, I’ve got spares in the files.

Thank god for files.’

Finally, also from The Poetry Cure, from Carole Satyamurti’s Out-Patients:

‘My turn. He reads my breasts

like braille, finding the lump

I knew was there. This is

the episode I could see coming —

although he’s reassuring,

doesn’t think it’s sinister

but to be quite clear…

He’s taking over,

he’ll be the writer now,

the plot-master,

and I must wait

to read my next instalment.’

The poets say it all.

I have nothing to add.

CQ

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Categories Cancer, Death and Dying, Doctors, Literature, Poetry, Suffering

Medicine Unboxed 2013…

November 24, 2013 //
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The poster for this conference epitomises the creativity and richly imaginative content that defined the event itself.

I have attended many ‘Medical Humanities’, ‘Health and Humanities’, ‘Medical Narrative’ and such like conferences in the past. Medicine Unboxed 2013 – with this year’s theme of Voice – stands alone as something uniquely innovative and stimulating, as well as both emotionally and intellectually challenging.

The twitter (#MU13VOICE) and facebook feeds are excellent and will give you a real sense of the diversity and substance of the content. Although I could only attend the first day, I was so very pleased to have been physically present for even 50% of the entire programme.

‘Voice’ (full programme – http://www.medicineunboxed.com/2013-voice/) was presented and discussed as the poetic voice (Jo Shapcott and Andrew Motion), the patient (Rhys Morgan), the captured voice (Fi Glover, The Listening Project), the singing voice (Birmingham Medical School Choir, Melanie and Rebecca Askew), the performed voice (Bobby Baker), and the sung voice (in terms of composition and phonetics, and music as therapy, and as an end in itself).

It is difficult to pinpoint exact reasons why I found the conference so refreshing and stimulating. The absence of medical-type presentations contributed, and Sam Guglani et al.’s creative approach to all possible aspects of ‘Voice’ in terms of health and medicine was hugely impressive.

I wonder whether the audience consisted of many non-medical/non-health-care professionals. One thing that irked me was the repeated use of the word ‘patient’. It grated. Perhaps this is because I no longer work in clinical medicine. As an ‘outsider’, ‘patient’ feels like a label that attaches an otherness to those who are ill, whereas in fact, as identified by Susan Sontag, the gap between ‘them’ and ‘us’ is very narrow…

My experience of sitting outside clinical medicine left me much to consider also following the session on the ‘Medical Voice’, in which Iona Heath, Deborah Bowman, Julian Baggini and Charlotte Blease participated. A ‘crisis in empathy’ amongst doctors was highlighted here, and there was much discussion on how medical training could be improved to address this.

I have often been critical of the lack of empathy and compassion that those who are ill have experienced during the medical consultation. I left clinical medicine a few years ago, to explore medical humanities/health and humanities (not quite sure what to call it anymore), and now work as an editor for an organisation that creates books on health and illness for children. We recently advertised for a junior doctor for the role of a medical writer. I was overwhelmed by the quantity (and quality) of the applicants – over 20 junior doctors, all disillusioned by their first years in clinical medicine. Most had no intention of ever returning to the field.

I found this sad, that the system (‘medicine’, the NHS…) had somehow failed them to the extent that just a few years working as clinical doctors made them want to walk away. We are quick to criticise doctors and how they behave, which is sometimes, but not always, justifiable. Yesterday, I found myself in the unusual position of wanting to make a plea for the ‘Medical Voice’, that it might be heard and witnessed too…

My view has inevitably been tempered by my distancing. For a perspective from a doctor within clinical medicine, do check out Jonathon Tomlinson’s response to Medicine Unboxed 2013, which truly reflects a ‘Medical Voice’ that needs to be heard: http://abetternhs.wordpress.com/2013/11/23/burden/

CQ

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Categories Doctors, Empathy, Medicine, Stories

Suffering: the word and the experience…

November 8, 2013 //
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‘I saw three ships go sailing by,

Over the sea, the lifting sea,

And the wind rose in the morning sky,

And one was rigged for a long journey…

…But the third went wide and far

Into an unforgiving sea

Under a fire-spilling star,

And it was rigged for a long journey.’

from Philip Larkin’s The North Ship

The word ‘suffering’ in the title of this blog is intentional and deliberate. However, I am aware that my interpretation of what suffering means may well be at odds with that of others. For me, I see my voyage through life as one demarcated by many diverse and rich experiences. But, as Larkin reflects, life itself is ‘an unforgiving sea’, and living it involves many obstacles and challenges that interrupt and disrupt the passage, a passage where suffering sits equally alongside all other emotional experiences.

Religion, particularly Catholicism, has historically appropriated, and plagiarised, the word. And so, ‘to suffer’ has come to additionally assert some kind of penitential meaning, a necessary experience to be endured for atonement of sins committed.

I am reclaiming the word in a purist and secular sense. I argue that suffering belongs with all the other subjective experiences that define our humanness, all of which contribute to the final sum of what it is to experience life and the living of it, and ultimately what it is to be one’s self.

A friend drew my attention today to a current piece in The New England Journal of Medicine, ‘The Word That Shall Not Be Spoken, by Thomas H. Lee (http://www.nejm.org/doi/full/10.1056/NEJMp1309660).

The word referred to in the title is indeed ‘suffering’. The author considers how physicians tend to avoid the word, judged as being ‘a tad sensational, a bit too emotional.’ He discovers that academic journals and textbooks similarly avoid it. When Lee asked colleagues why they avoided using the word ‘suffering’, one of the comments was that it was not ‘actionable’ for clinicians, which in turn reminded them of their powerlessness.

‘And it makes us feel guilty. Suffering demands empathy and response at a level beyond that required by “anxiety,” “confusion,” or even “pain.”

Thus, the word ‘suffering’ tends to be avoided by the medical fraternity, even though it may most accurately reflect what the patients they are caring for are actually experiencing.

Lee proceeds to discuss the alleviation of suffering, and here our views diverge. Undoubtedly, we cannot be complacent about the suffering of others. However, I believe that the critical first step as compassionate human beings, is to allow for the expression of suffering as an experience that is an inevitable accompaniment of life and living, and to acutely bear witness to what that lived experience is, for others, and for ourselves.

Only then, can we start to consider how it might be alleviated.

CQ

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Categories Doctors, Suffering

Poetry, Science and Medicine…

October 17, 2013 //
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I have come across two events over the past week where links between poetry and science or medicine have been initiated.
Firstly, appropriately at Keats House, I attended the launch of a collaborative project between poets and scientists (http://www.poetry.gb.com/BiomedicalScience). Eleven poets teamed with 11 scientists to create poetry that reflected on the life/work of the latter. At the event, both the poet and the scientist of each ‘team’ spoke about their respective experiences throughout the collaboration. The resulting poetry is wonderfully rich and evocative. It was also very moving to hear the scientists speak, and so poetically, of what the experience meant to them.

Secondly, today I came across a piece in a recent New Yorker (http://www.newyorker.com/talk/2013/10/14/131014ta_talk_singer) on poetry and medicine. John F. Martin is a ‘cardiologist, transatlantic academic, specialist in gene therapies for treating heart attacks, clinician, and published poet.’ I guess the ‘poet’ element is last mentioned in order to heighten the impact of this apparent incongruity. There have indeed been clinicians, such as William Carlos Williams and Dannie Abse, who were also published poets. But they are in the minority. I have not yet come across Martin’s poetry, but I will now seek it out.
Apart from his own poetry, Martin has also initiated an annual poetry competition for medical students both at UCL and at Yale School of Medicine. This project arose out of his concerns that ‘medical students are at risk of becoming “intellectually brutalized”…conditioned to focus upon the microscopic at the expense of the holistic.’
The competition is now in its third year, and I have been reading the work of past winners. Impressive. My favourite is Encounters with Death, by Kevin Woo (Yale University, 2012):

‘In the First Year
I gazed upon a body overtaken by Death
The fingers, withered and cold
Eyes as gray as the stainless steel casket
Call her Cadaver, they explained, and learn
Her lines, her edges…
…And in the First Year, I dissected Death.’

There is a separate stanza for each year, of four.

‘In the Second Year
I memorized the signs of Death
A lung, scarred and emptied
The nodes of Osler revealing infection within…
…And in the Second Year, I pathologized Death.’

‘In the Third Year
I saved a man from Death
His heart, so worn and weary
That it had surrendered its rhythm…
…And in the Third Year, I conquered Death.’

‘In the Fourth Year
I had a conversation with Death
Of what do you remain afraid, Death asked
That you might know Death only by dissection, as pathology, to be conquered?
And I learned that Death
Was a companion along the journey of humanity
Along which we travel
I smiled, because I understood
At last
And in Fourth Year, I accepted Death.’

A most impressive journey in just 4 years. For most of us it takes a lifetime, if we do even manage to arrive.

CQ

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Categories Death and Dying, Doctors, Literature, Medicine, Poetry, Science

Gabriel Weston’s ‘Dirty Work’…

July 25, 2013 //
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I first came across the writer and medic Gabriel Weston when I read her debut book and memoir Direct Red (2009), which won the PEN/Ackerly Prize for Autobiography. I liked it. Weston’s personal account of the challenges of balancing clinical committment in a morally ambiguous (male) world resonated strongly for me.

Weston’s current book is also her first work of fiction. However, with the scenario remaining firmly within the world of medicine, the workings of a medical mind behind the pen of Dirty Work were apparent throughout. Clinical moral dilemmas remain pervasive in the novel, specifically in this case that of doctors performing abortions.

I enjoyed the experience of reading Dirty Work, particularly when Weston’s medical background facilitates thought-provoking reflections:

‘A good doctor needs to know how to spin a yarn. That’s what they teach you at medical school, though no one ever says it in so many words… They call it history-taking, this supposedly neutral process in which a patient and doctor collaborate to weave a shape out of what’s gone wrong. They make it sound straightforward.’

Weston continues to consider how, as doctors ‘take the history’, they encourage patients to dwell specifically and exclusively on symptoms, ‘ignoring the white noise of emotion’.

‘The doctor is rewriting the patient’s story while seeming only to bear witness to it.’

A mistake, a clinical error, results in suspension for the female medical protagonist, who is subsequently investigated by the hospital Fitness-To-Practise committee. The novel follows her throughout the three week questioning period, and witnesses her change of attitude towards medicine in general, as well as the part she herself plays within the field.

She learns much about herself throughout this process, and concludes:

‘I have done much worse than not articulating the particularities of my own experience. I have been deaf to those of my patients.’

‘What a doctor needs…is a quiet appetite for truth.’

I enjoyed the experience of reading this book (an experience that reminded me of Louise Doughty’s Apple Tree Yard, perhaps the not dissimilar themes of female protagonist, career woman, moral dilemma, ‘perfect’ life going astray…).

The plot went a little off track for me towards the end. The ending itself left me dissatisfied, and brought to mind something I heard the film director Mike Figgis say recently. Figgis deliberately chooses open-endedness in his films, this sense of not being finished or closed allowing viewers to create their own conclusions. Whenever he reads a book, he stops 20 pages or so before the end, as most imposed closures ultimately disappoint. I can relate to this. The ending in Dirty Work was not a ‘bad’ one. It just left me a little disappointed, and flat.

It will be interesting to see where Weston’s writing heads from here. To date, her medical background informs the content of her books. Whether she will stick to this theme or whether she will explore other literary terrains, remains to be seen.

CQ

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Categories Doctors, Fiction, Literature, Loss, Medicine

Brian Friel’s Molly Sweeney…

April 21, 2013 //
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Currently at The Print Room (a very lovely and intimate theatre near Westbourne Grove that I have only just discovered), Molly Sweeney first appeared in 1994. Inspired by the playwright’s own cataract operations in 1992, the play consists of a series of monologues from three performers: Molly Sweeney (Dorothy Duff), who has been blind since 10 months of age, Molly’s husband Frank Sweeney (Ruairi Conaghan), and the surgeon Mr Rice (Stuart Graham), who operates on Molly in an attempt to restore her sight.

This is an intense piece, superbly acted, which explores not just the meaning of sight and vision and the disconnectedness between seeing and understanding, but also addresses issues around identity, how we define ourselves, how we allow others define us, and the tragic consequences that can ensue when we change who we are, not for our own sakes, but for those we love.

The play is primarily the story of Molly, but it is also the story of Frank, whose mission and obsession becomes the restoration of Molly’s sight, and of Mr Rice, whose interest in operating on Molly takes on a personal agenda that goes beyond his patient and her needs.

A microcosm of life itself, the three characters represent the world at large, the interconnectedness and conditionality of all our relationships, and how self-serving and destructive they can become.

Thought provoking stuff…

CQ

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Categories Blindness, Doctors, Families, Literature, Loss, Theatre
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