Michele Baldwin’s cervical cancer story

With a few months to live, Michele Baldwin paddle boarded over 700 miles down the Ganges River to help raise awareness about cervical cancer.

Thank you to Sara Fitzgibbon for posting a link to it that I spotted (@barb287)

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Session #5: Looking Back (at institutions that failed us)

These notes on the fifth session are written by one of the participants, summarising our discussions of Celia de Fréine’s Blood Debts & Hanna Greally’s Birds’ Nest Soup.

I was … very affected by the texts we looked at this week: the narrative accounts from a patient’s point-of-view really spurred my inner empathist, and, by the end of ‘Blood Debts’, I personally viewed the doctors and medical professionals as incompetent or even villainous. I believe strongly that this is what Medical Humanities really brings to our medical education. TV shows often paint this idea of doctors who, despite their smarm and snark, only need critical thought, smarts and perhaps a tiny little bit of luck to end up as the celebrated hero (or anti-hero) of their respective narratives (think House M.D.,Grey’s Anatomy, or The Good Doctor). Outside of perfectly wrapped 45-minute storylines, however, other narratives exist: those of the long-suffering, patient patients, mistreated by medical professionals, ever-wary, ever doubtful. How can we be alienating the very people we have sworn to help? It certainly becomes impossible to ignore this incongruity when stories and poems force us to consider their perspective.

Blood Debts by Celia de Fréine

> This week we looked at Blood Debts by Celia de Fréine, a translation of Fiacha Fola, a sequence of [Irish language] poems by de Fréine describing her experience of being one of 1600 Irish citizen infected with contaminated blood products in the 1970s.

> We began, however, without any knowledge of the context as we went into the first poem: ‘chalice of my blood’. This was a reflective poem acknowledging there seemed to something congenitally wrong with the poet (suggested to literally be her blood), and lamenting on what what she she could have done differently should she had known. She concludes that she would have not done anything differently. She invokes religious (Greek/Roman) imagery that elevates the concept of marriage to mythic proportions and seems to celebrate her right to have the partner and children that she wants.

> In the second poem, ‘miracle play’, heavy dream-like imagery is used, with references to religion and that of plague as she watches a biblical play. There is imagery suggesting the concept of something sinister hiding within something pure, and the concept of dramatic irony as a literary technique—originally used in Greek tragedy, by which the significance of a character’s actions is clear to the audience although unknown to the character—is introduced in her understanding of the spread of disease, unbeknownst to the biblical characters, and harks back to the preceding poem to the concept of the poet’s present self looking at her past choices in retrospect.

> The next poem, ‘september – month of birthdays’ recounts the birth of her second child and the administration of Anti-D (Rho(D) immunoglobulin (RhIG)). There is references to complications in her child’s birth, with his birth being breech instead of head, and references to her child not crying. There is also a sense of misplaced trust in the hospital/medical practitioners, with some subtle doubt being suggested as to whether they are acting in her best interests. Particular emphasis is put on her injection of Anti-D.

> The next few poems describe how she believes she is getting sick and jaundiced. She is placed in a situation where her doctor does not believe her symptoms and self-diagnosis and is dismissed by the doctor as ‘run-down’. This continues on with various accounts of the paternalistic attitude of doctors, from obstetricians to specialists who seem indifferent to her worsening illness. Eventually she is informed of the Anti-D scandal on the media, but despite her efforts to find out more, her concerns are continually sidestepped by upper management. Her initial doubt surrounding healthcare professionals evolves very much into anger and blame and they are painted as clear antagonists in her narrative.

> What Blood Debts does excellently is highlight the communication breakdown between medical practitioners and patients, especially when there is a mistake make by the practitioners. From the dismissiveness of first-line primary healthcare practitioners to the evasiveness of upper management, the medical field is depicted as having a toxic attitude of evasion and paternalism that [reflects] a lack of respect and dignity for its patients. Although occurring in 1977, the Anti-D scandal only became public in 1994—almost 20 years after it occurred, and de Fréine’s account is one of 1600 Irish citizens who were affected.
>

Hanna Greally’s Birds’ Nest Soup

> We ended by taking a look at an introductory excerpt from Bird’s Nest Soup by Hanna Greally, explained subsequently by a podcast we listened to as an autobiographical account of her institutionalisation in a mental hospital against her will, without the legal capacity to have herself discharged. To bring together all the sources we looked at in the tutorial, we considered the concept of institutionalisation: not only as a synonym for ‘incarceration’, but in its sociological meaning—the process of establishing something as a norm in an organisation or culture. We considered the idea of the institutionalisation of medicine and the possible implications that that has on the our future role as doctors-to-be; how the hallmarks of institutions—such as hierarchal systems of bureaucratic management, strict systems of conduct, and depersonalisation—can have a detrimental impact on the doctor-patient relationship.

> I have included some articles for anyone who is interested in further reading around the texts. The first explains the details of the 2018 CervicalCheck scandal, which we noted bares shocking similarity to the Anti-D scandal, the second is a blog post by a recently qualified doctor from the US about the concept of institutionalisation and the reality of real world practice in corporate medicine, and the final article is on paternalism and the doctor-patient relationship.

> CervicalCheck scandal: What is it all about? (The Irish Times, 2018)
https://www.irishtimes.com/news/health/cervicalcheck-scandal-what-is-it-all-about-1.3480699

> How the Institutionalization of Medicine Has Destroyed the Doctor-Patient Relationship (Shlifer, 2016)
http://in-training.org/institutionalization-medicine-destroyed-doctor-patient-relationship-11491

> From Paternalism to Partnership (The Irish Times, 2001)
https://www.irishtimes.com/news/health/from-paternalism-to-partnership-1.316916

Best description of an anxiety attack

This description of an anxiety attack in Sally Rooney’s Normal People is particularly accurate for a specific sort of anxiety and, especially as it proceeds, becomes exceptionally detailed and therefore very helpful to anyone trying to understand what a sufferer of such an attack goes through.

His anxiety, which was previously chronic and low-level, serving as a kind of all-purpose inhibiting impulse, has become severe. His hands start tingling when he has to perform minor interactions like ordering coffee or answering a question in class. Once or twice he’s had major panic attacks: hyperventilation, chest pain, pins and needles all over his body. A feeling of dissociation from his senses, an inability to think straight or interpret what he sees and hears. Things begin to look and sound different, slower, artificial, unreal. The first time it happened he thought he was losing his mind, that the whole cognitive framework by which he made sense of the world had disintegrated for good, and everything from then on would just be undifferentiated sound and colour. Then within a couple of minutes it passed, and left him lying on his mattress coated in sweat.

Sally Rooney, Normal People (Faber & Faber, 2018), p. 206.

Opening session: Sepsis undiagnosed, cancer unreported

We opened by reading together the tragic, tragic, tragic story of the death in Naas hospital on Christmas Day just gone of twenty-four-year-old Karen McEvoy from sepsis, only days after safely having had her third child, as reported by Kitty Holland in the Irish Times.

https://www.irishtimes.com/news/health/woman-24-who-died-a-week-after-giving-birth-had-sepsis-says-coroner-1.3776483

The overall sense that came across from the reading was one of incredulity: how could this have happened to this young, healthy mother; how was the sepsis missed; how could she have handled so much pain without the urgency of the situation becoming apparent to everyone?

We looked at the language of the reporting and at what Karen’s partner, Barry Kelly, has said since, as quoted by Holland:

“Nobody asked Karen anything about why she was on crutches… “I went into her and I was talking to her. I was like: ‘I love you. You can’t leave me. We have to build our house. We have to get married in 2025.’ I just kept calling her. I can still hear the sounds of the compression pump on her chest, and all I wanted was to hear the beep, but it was just a flatline… “I have to do this for Karen. Her shoes are my shoes. No matter what I do or say I can never bring Karen back.
“I have to get answers for my kids. They are not going to believe in fairies forever. I have to be able to tell them: ‘This is what happened to your mum’.”

We discussed some of the factors that may have fed into the disastrous dynamic that led to the tragedy: her background, her situation, the time of year, the healthcare resources.

I wondered might there be anything in simply the fact that Karen was a woman (aside from the postpartum aspect of the pathology). There was a discussion about the idea of women being taken less seriously than men when it comes to their reports of pain. I suggested we keep in mind the possibility of some women in some cultures (Ireland, for instance) being less likely to report pain in the first place for fear of being the focus of attention, of causing someone a problem, of ruffling feathers, of breaching the unwritten code of behaviour that says you’re not worthy of anything more than survival.

With that in mind we moved onto our second text: John McGahern’s The Barracks, particularly the story therein of Elizabeth, who develops breast cancer and is very slow to report her symptoms with tragic results.

She could not let herself collapse …

She tried to brush it off as nothing. With all her will she rose from the chair. She lifted off the boiling kettle, put on a saucepan.
  “It’s nothing at all,” she smiled casually with every muscle in her face. “It’s only to be sure.”


It’ll probably be just another iron tonic,” Elizabeth tried to close the conversation.

“Have you been aware of them for long?” he asked.
  He did not even ask to see them yet. She pretended to count back.
  “Last November,” she diminished. “I felt as well as usual. Christmas was coming. There seemed so many things I had to do. It went on the long finger and slipped from day to day.”

  “In the breast. There are cysts there. They may be malignant.…”
  “When did you notice them?”
  “A few weeks ago,” she lied.
  “You never told?” he reproached.
  “I thought that they were nothing,” she tried to excuse. “I didn’t want to cause you more trouble. I was feeling tired and didn’t know till he said.…”

Never paint for wealthy folk, only for the poor

Images from The Magic Paintbrush & the film of Christ Stopped at Eboli

I sometimes finish the series with a “bedtime story” reading of Julia Donaldson’s genius version of the Magic Paintbrush. Following our encounters with structurally disadvantaged patients in the work of Carlo Levi, Mikhail Bulgakov, an essay by my grandmother, and John Berger’s account of John Eskell’s work in St Briavel’s, I say something along these lines:

In your medical career, you may well encounter your own Gagliano- / Gorelovo- / Yorkshire Dales- / Forest of Dean-like disadvantaged groups, and the overarching system / society (the Emperor) may well try to turn you away from being overly concerned for them. Whether you use your paint brush (licence to practise) like Shen to act and like Levi to also reflect on their experiences, just make sure that at very least you don’t turn your back on those most-in-need groups … except where it is temporarily to protect yourself & your own health from too much wear and tear, of course.

‘Outside the operating theatre, I burst into tears’: Gabrielle Cummins on experiencing a panic attack during a medical procedure

From the Irish Times >>>

“Will I get your mam?” asked the nurse.

“She’s not here,” I spluttered in between tears, “she had to get back to our shop to work.”

Those lines are from my diary, written when I was 13 years of age. I had just been admitted to hospital with a threatened burst appendix and was about to be operated on to have it removed. My 13-year-old self writes: “When I’m brought to the room outside the operating theatre, I suddenly become very frightened and burst into tears. The nurse tries to console me. I’m given something to calm me down and a short time later, all I remember is being wheeled into the operating theatre where I comment on the great view of the Rock of Cashel out the window and then I fall into a deep sleep. I wake up in the recovery room, calling once again for my mother and, thankfully, this time she’s there.”

Read the rest >>> 

Final session, in St James’s Hospital

Two things got us off to a bad start for this one:

  1. This was meant to be last week’s session so that all the social & political material of last week would be the climax, but it wasn’t logistically possible.
  2. The transport from Trinity Biosciences Institute was late & some students got lost which meant we were very late getting started & therefore had to cut a few texts that I’d planned to read with them 😦

We met at the entrance to the hospital & I briefed them on a small exercise I wanted them to do: inspired by Danielle Ofri’s idea of literary rounds, I gave them each the text of a different poem/text & asked them to read it to themselves for a few moments. Each poem was set in a hospital. I then asked to make their way at their leisure to the seminar room and on the way to observe as much as they could about the hospital environment connected with, inspired by, or entirely unrelated to the poem they’d just read!

In class, we started with the Yeats poem & tried to recall it without reference to the text. It wasn’t entirely a success, let’s just say.

We then went around the group, with each person reading aloud the poem they had received and then sharing with the group their observations about hospitals/ the hospital we were in / the hospital in the poem. Each contribution led to further discussions & chats & recollections.

The poems were Leanne O’Sullivan’s ‘Tracheotomy’, & ‘Leaving Early’, ‘In the Way’ by Elaine Feeney, ‘Postcards from a Hospital’ by Doireann Ní Ghriofa, ‘Visitors, Kidney Ward’ by Enda Coyle-Greene, ‘Leaving the Ward Behind Me’ by Tommy Lambert & ‘The Chapel Corridor’ by Barry Mitten (both from Climbing Mountains in our Minds, edited by Sylvia Cullen) and Patrick Kavanagh’s ‘The Hospital’.

Bronwen Barrett & Martha Knight of Freshly Ground Theatre

The texts we didn’t get to, but which I distributed nonetheless and which I will be using with a new group next term instead, were Eleanor Hooker’s ‘The Man in Bed Eight’ & the first scene from a new play called the Bold Step by Bronwen Barrett & Martha Knight of Freshly Ground Theatre, which I saw (& was totally bowled over by) at the weekend. (They kindly emailed me the opening scene, which they based on interviews with their mothers about their own births: “M: There was a student midwife sitting beside me, shaking … B: ‘you’ll be grand, you’ll be grand.’ M: I remember turning to this nurse, typical teacher, like, in the middle of the epidural, saying ‘sure, I could be correcting copies”!!!!! 🙂 

I then read a few bits of Danille Ofri’s essay ‘The Poetry Ward’  about introducing poems to the routines of doctors in hospitals. I finished up with a full reading of John Stone’s ‘Gaudeamus Igitur’ & dismissed everyone with best wishes. 🙂