Archives for posts with tag: Cancer

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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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

I have read two books by Irish authors recently: Kevin Maher’s The Fields and Roddy Doyle’s Guts.
In Doyle’s book, there is an overt cancer theme throughout. For Maher, it is more of a subplot.
What struck me about both, was how the authors used humour.
I laughed out loud, which is very unusual for me, when reading most of Guts. I wondered afterwards how Doyle worked humour around such a serious topic – bowel cancer, unsurprisingly. Humour is not a flippant or reductionist tool in Doyle’s hands. Rather, it invites you in, seduces you into joining the ‘party’, and you feel welcome and involved. The banter and asides, which are all-pervasive throughout, facilitate an expression and a sharing of stuff that might otherwise be unbearable.
Jimmy, who has just been diagnosed, tells his father the news in the pub:
‘— Are yeh havin’ another?
— No, said Jimmy. I’m drivin’.
— Fair enough.
— I have cancer.
— Good man.
— I’m bein’ serious, Da.
— I know.

— Jesus, son.
— Yeah.
— Wha’ kind?
— Bowel.
— Bad.
— Could be worse.
— Could it?
— So they say, said Jimmy.
— They?
— The doctors an’ tha’. The specialists. The team.
— The team?
— Yep.
— What colour are their jerseys?’

In The Fields, the protagonist’s dad has a lymphoma:
‘And Dad, fair dues to him, plays down the whole cancer thing like it’s a very very long and serious life-threatening cold. He doesn’t even use the word ‘cancer’. Ingeniously, he calls it, ‘my neck thing’…
…They don’t know where it came from, but Dad suspects it might be because of the new microwave…
When he walks through the kitchen after that he kind of ducks when he passes the microwave. Just in case it’s still spewing out cancer-causing rays that might start cooking his few remaining healthy cells.’

Both books are works of fiction, and although they deal with very serious topics, these very believable stories of interconnected lives that have been interrupted by illness and impending mortality leave you feeling uplifted and hopeful.
The magic of Irish humour, really…

CQ

The BBC foreign correspondent Helen Fawkes has ovarian cancer. She was first diagnosed 12 years ago and had been in remission until recently. She has now been told that she has incurable disease (http://www.bbc.co.uk/programmes/p01j9ghq).

Twelve years ago, once chemotherapy had been completed, Fawkes wrote a list of 10 things she wanted to do on the back of an envelope. One of the items was to become a BBC foreign correspondent, which she duly achieved. When she was told the diagnosis of recurrent and incurable cancer, she initially focused on the unfairness of it all. Yet, alongside the upset and the anger, she also became determined to live her life that remained to the full. She has written a 50 item to do list, which she prefers to call a list for living rather than a bucket list…

As she ticks off the items – things that celebrate being alive, mostly experiences shared with those dear to her – Fawkes finds that the list has made her excited about life. Now finding herself in a situation where control and structure have largely been eroded, she sees the list as a way of prioritising her time, of minimising regrets, and of helping to ensure that the time she has left is spent truly ‘alive’ rather than on autopilot.

Fawkes questions whether such an approach to life, as in living it ‘to the full’, is inherently selfish, or whether it might in fact be spiritual. There is no simple answer, but I do concur with the psychotherapist Philippa Perry, who suggests that there is something of the shopping list about bucket lists, a sort of consumerist approach to buying one’s way out of feeling what one is feeling…

The artist and senior TED fellow Candy Chang created a thought-provoking visual piece of work around the notion of what we really want to do and to achieve with our lives (http://www.ted.com/talks/candy_chang_before_i_die_i_want_to.html).
Chang turned the exterior of a derelict house in her neighbourhood in New Orleans into a giant chalkboard, where passersby were invited to complete the line, ‘Before I die I want to…’
Within 24 hours, the board was filled with hundreds of messages. The idea has now moved to many other countries, where it has been just as popular. Clearly, people do stop to consider what they would like to do, or perhaps what they dream of doing ‘someday’. Whether this translates into an actual ‘doing’, particularly before one becomes aware that death is much closer than anticipated, is another important and as yet unanswered question.
Chang sees life as ‘brief and tender’. She sees death as an intrinsic part of how we live, and believes that preparing for this inevitable event can not only be empowering, but can also serve to clarify our lives as we live through them.

CQ

This phrase is taken from Christopher Reid’s poem Exasperated Piety from his collection A Scattering, which was created as a tribute to his wife, who died as a result of cancer in 2005.

It is no coincidence that this came to mind today. This day a year ago, my sister was diagnosed with cancer, from which she died less than five months later. When I first saw her a few days after the diagnosis, we were both overwhelmed by our sadness and distress. I was also acutely aware that my sister had now entered a world that was instantly unshareable, and which progressively alienated her over the next months from those of us who remained in a world she had hitherto inhabited.

Susan Sontag describes illness as ‘the night-side of life, a more onerous citzenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.’

Yet, although the gap between the kingdoms is narrow, those who are suddenly transported from the land of the well to that of the ill very quickly realise the meaning and the isolation that this entails. Christopher Hitchens described is as follows:

‘I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of the malady.’

I will never know what my sister’s experience was. She chose not to talk about it. I became increasingly aware, and guilty, of the gap between our worlds, one that seemed to widen every moment of every day of those few short months.

A Hospital Odyssey is an epic poetic and mythical journey through illness by Gwyneth Lewis, which focuses on Maris’s experience following her husband’s cancer diagnosis. Maris journeys alone to the Otherworld, separated from Hardy, and explores an imaginary and surreal illness landscape.

The voice throughout is that of Maris:

‘I want to capture what it is to care

for someone you love who’s very ill,

how quickly you age as you see them suffer,

you’d do anything to make them well,

but you can’t.’

‘What do you say when someone you love

is dying and there’s nothing you can do

to stop it happening, and you’re alive

and well, nowhere near through

adoring , and you can’t follow?’

CQ

This article appeared in today’s Telegraph (http://www.telegraph.co.uk/health/healthnews/9965450/Terminally-ill-doctor-to-tweet-from-her-deathbed.html). I came across it via my Med Hum Twitter feed.

Dr Kate Granger, a 31 year old elderly care specialist, was diagnosed with a rare and aggressive form of cancer in 2011, and was given a prognosis of less that 5 years.

She has already published a book, The Other Side (http://theothersidestory.co.uk/), and has a blog drkategranger, in which she shares her illness experience thus far.

In the Telegraph interview, Dr Granger speaks of humour, and how it has helped both her and her husband to cope. She hopes to continue this sense of humour to the end, culminating in ‘live tweets’ from her deathbed.

This public sharing of her experience is not just about helping herself and her husband cope with what life has thrown at them. Dr Granger also hopes that her experience may help others in a similar situation, and facilitate a sharing of what they are going through with their loved ones.

I was struck by many things when I read about Dr Granger. Most particularly, I am in awe of her courage in dealing with something so huge with such a positive and constructive attitude. Anything that facilitates discussion on death and dying, and challenges the silence that too often surrounds this most absolute of truths, is to be embraced. Even more so when the discussant is brave and generous enough to put an ‘I’ into the argument.

CQ

Just been, and it was magic. Mega Magic.

The current performance, which includes just a short few days at The Tricycle, centres around the death of Hughes’s father (Sean Hughes senior) from cancer.

The show is a tribute to Hughes’s dad, and as such has many moving moments, but it is also an honest and brave depiction of their at times troubled relationship.

Hughes does not dwell on pathos, and while this is a script with death and dying as its focus, it is by no means leaden or depressing. On the contrary, it is hilarious, at times uproariously so, a fact that in no way diminishes (in fact it enhances) the very real and poignant central theme.

Hughes cleverly skips around – his childhood, moving back to Dublin in 1970 aged 5 with a cockney accent at the height of ‘The Trouble’, the Irish, Catholicism, drinking, his own health and relationships – but always within sight of his father, so that returning repeatedly to his hospital bed feels natural. The show is very much about the death of ‘someone you love’ (a phrase Hughes repeats several times, and also questions what it means in relation to our parents), and about what grief means and how we make sense of it, but within the context of both the lived life of the person who has died, and the lives of those left in death’s wake.

I loved the finale. I had wondered on what note it would conclude, and I think Hughes got it just right. It served to beautifully and movingly emphasise what the entire show had attempted to portray  –  that we can indeed talk about death and dying and loss and grief, that we can also laugh about it, and we can combine it all, publicly, to create something tangible and meaningful, while at the same time entertaining and real.

I felt uplifted as I walked home.

Genius. I was mesmerised, moved and seduced by Hughes’s mind and brilliance.

CQ

This play by Margaret Edson (London: Nick Hern Books, 2000) is a must read for anyone working, or considering working, in healthcare. Particularly, most particularly, doctors.

Edson, a school teacher, worked in a cancer and AIDS unit, an experience that inspired the play. It won the Pulitzer Prize for drama in 1999.

The play does not feel like a work of fiction, and I guess it is probably more of a fact/fiction hybrid, as presumably the narrative was informed by many individual stories Edson encountered in real hospital life. I saw the TV adaptation of the play, with Emma Thompson in the main role, some years ago, which was extraordinary. Only recently have I read the play itself, twice as it deserves a re-read, there is so much to experience in just 55 pages. It is a deeply moving, and harrowing, literary work.

Vivian Bearing, a Donne specialist, is diagnosed with advanced ovarian cancer. The play is set in a Cancer Centre, where Bearing is currently having chemotherapy. Flashbacks piece together her story, from diagnosis, and before, to ‘now’, the opening scene, which takes place just a few hours before her death.

She opens with her musings on how the ill are greeted:

‘I have been asked ‘How are you today?’ while I was throwing up into a plastic washbasin. I have been asked as I was emerging from a four-hour operation with a tube in every orifice, ‘How are you today?’

This reminded me of John Berryman’s Dream Song 207:

‘ – How are you? – Fine, fine. (I have tears unshed,

There is here near the bottom of my chest

a loop of cold, on the right.

A thing hurts somewhere up left in my head.

I have a gang of old sins unconfessed.

I shovel out of sight

a many-ills else…)’

With some irony and a dark humour that to some extent define her personality and coping ability, Bearing concludes on the question ‘How are you?’ that doctors routinely, and often unthinkingly, ask:

‘I am waiting for the moment when someone asks me this question and I am dead.

I’m a little sorry I’ll miss that.’

The humour continues (and we are only on page 2):

‘It is my not my intention to give away the plot; but I think I die at the end.

They’ve given me less than two hours.’

Thus, from the very outset, we know where this story is heading… But the remaining minutes in Bearing’s life are so worth attending to, and witnessing. We are invited into a (at least partly unneccessarily) tragic story that powerfully highlights the gap between how doctors behave and deal with illness and what the experience of such illness might be for the sufferer.

We hear of words such as ‘insidious adenocarcinoma’, ‘primary adnexal mass’, which are dropped into the initial breaking bad news consultation. We share Bearing’s experience of the medical ‘Grand Round’, where ‘the patient’ is discussed in the third person (or merely as the condition from which they suffer), and is visible only in a medical sense.

Bearing is keenly aware how the doctors ‘anatomise’ her, armed with a ‘potent arsenal of terminology’, which is mostly incomprehensible.

Cancer and its treatment constitute a life mostly of awfulness:

‘I receive chemotherapy, throw up, am subjected to countless indignities, feel better, go home. Eight neat little strophes. Oh, there have been the usual variations, subplots, red herrings: hepatotoxicity (liver poison), neuropathy (nerve death).

But she survives the radical treatment, and indeed becomes a somewhat celebrity case:

‘I have survived eight treatments of Hexamethophosphacil and Vinplatin at the full dose, ladies and gentlemen. I have broken the record. I have become something of a celebrity.’

And then, with insight and poignancy she observes:

‘But I flatter myself. The article will not be about me, it will be about my ovaries.’

It is this insight and knowing (and seeing-through the medical profession) that makes Bearing’s story feel, not just real, but authentic.

When pain becomes a major problem, and Bearing needs aggressive pain management to ‘stand it’, she comments:

”It’: such a little word. In this case, I think ‘it’ signifies ‘being alive’.

Donne provides a backdrop throughout. Bearing was an expert on the poet’s Holy Sonnets and her life had always been suffused and intricately linked with his words, words that now become acutely apposite:

‘Death be not proud, though some called thee

Mighty and dreadfull, for, thou art not soe.’

To mention Bearing’s death at the end does not indeed betray the plot. It is an important, and tragic, ending, which says so much about what is wrong with the whole business of how the voice of the ill is listened and attended to.

CQ

I spoke in my last post, on Christopher Hitchen’s posthumous Mortality, of how the diagnosis of cancer abruptly and immediately catapults one from the Kingdom of the well to that of the ill. Hitchen’s widow, Carol Blue, refers to this in the Afterword:

‘We were living in two worlds. The old one, which never seemed more beautiful, had not yet vanished; and the new one, about which we knew little except to fear it, had not yet arrived.’

Dennis Potter came to mind when I read this. In his last interview, with Melvyn Bragg two months before his death from pancreatic cancer in 1994, Potter spoke about the ‘nowness’ of his life. Since the realisation that he had incurable cancer, his ability to see, and live, the present tense had become a celebration, a truly wondrous thing. As a result, he experienced a newly found serenity, and a true appreciation of life’s beauty, whilst at the same time also noting more acutely what is most trivial and most important, although the distinction did not seem so relevant any more.

Hitchen’s widow mentions fear. The writer himself briefly alludes to Philip Larkin and his poem Aubade (Faber, Collected Poems, 2003, ps. 190-191), a piece that overtly addresses the fear of dying:

‘…Arid interrogation: yet the dread

Of dying, and being dead,

Flashes afresh to hold and horrify.’

Referring again to Potter, during the interview the playwright discussed our innate fear of death, despite the fact that only humans, of all the animal species, know with absolute certainty that we will die. Larkin deals with this fear head on in Aubade:

‘…The sure extinction that we travel to

And shall be lost in always. Not to be here,

Not to be anywhere,

And soon; nothing, more terrible, nothing more true.’

In Mortality, Hitchens reveals how he dealt with the fact of being ‘mortally sick’ with both a ‘modicum of stoicism’ and a great interest in the ‘business of survival’, which often necessitated existing in ‘a double frame of mind’. Inevitably, Hitchens discusses religion. Being ‘mortally sick’ did not weaken his atheism. With some irony, he shares the following:

‘What if I pulled through and the pious faction contentedly claimed that their prayers had been answered? That would somehow be irritating.’

And:

‘If I convert it’s because it’s better that a believer dies than an atheist.’

On a more serious note, Hitchens concludes:

‘the religion which treats its flock as a credulous plaything offers one of the cruelest spectacles that can be imagined: a human being in fear and doubt who is openly exploited to believe in the impossible.’

Although not an atheist, Potter had a similar view on religion, that of a phenomenon that too often reflects man’s fear of death. Its very notion held no interest for him, even when faced with imminent mortality.

Although not fearful, Hitchens did feel cheated. He had much more to do, much more to read and to write. That very need, to achieve, at least partly, what had to be done and said, became a driving force for Hitchens, as it had also done for Potter.

For Hitchens, there were times, particularly in the throes of pain and the side-effects of very aggressive treatment, when he wondered whether, with the knowledge of the agony endured, he would go through it again. Possibly not, he concluded.

He chose to ‘do’ death in the active sense, all the time nurturing ‘that little flame of curiosity and defiance’.

As his readers, we benefit from this ‘doing’.

CQ

I have long been a Hitchens fan, a huge admirer of his intellect, his extraordinary brightness, as well as his fearlessless, when well, but even more so when ill.

I followed his column in Vanity Fair from the diagnosis of oesophageal cancer, much of which is now available in the posthumously published book Mortality (London: Atlantic Books, 2012). Perhaps a somewhat mellower representation of the writer, Hitchens, within the framework of illness and the possibility of imminent death, is still Hitchens, ascerbic, ironic, pretty fearless, and palpably authentic.

Mortality opens with a terrifying image, on the day he was forced to confront his symptoms and seek medical advice:

‘The whole cave of my chest and thorax seemed to have been hollowed out and then refilled with slow-drying cement.’

This, almost shocking, metaphor leads quickly to acute medical intervention, and ultimately ‘the diagnosis’.

Susan Sonntag spoke of the separate Kingdoms of the sick and of the well, and how narrow in reality the divide is between the two. Hitchens similarly speaks of moving from one world to another, following the diagnosis:

‘a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.’

Despite the confirmed reality of cancer, and the strange world Hitchens has sudddenly been catapulted into, a wry humour remains:

‘The new land is quite welcoming in its way. Everyone smiles encouragingly and there appears to be absolutely no racism.’

But with the new land, comes a new language, both verbal (‘metastasized’, ‘ondansetron’) and non-verbal, gestures that needed getting used to and interpreting. I was reminded me of the words of the poet Julia Darling, who died of breast cancer, and her poem Too Heavy (The Poetry Cure, Julia Darling & Cynthia Fuller (eds), Northumberland: Bloodaxe Poetry, 2005, ps.35-36):

‘Dear Doctor,

I am writing to complain about these words

you have given me, that I carry in my bag

lymphatic, nodal, progressive, metastatic

There is much more I need to say about Hitchen’s Mortality.

More tomorrow.

For now, I end with this:

‘To the dumb question “Why me?” the cosmos barely bothers to return the reply: “Why not?”‘

CQ