Tag Archives: hospice

January’s Nonfiction Releases: Clarke, Heminsley and Lalkhen

Three new books with medical themes (no surprise there), including the first Covid wave in the UK; fertility and body issues in a new queer family; and pain management strategies.

Breathtaking: Inside the NHS in a Time of Pandemic by Rachel Clarke

Clarke is a palliative care doctor based in Oxfordshire. She runs the Katharine House hospice but during the coronavirus pandemic has also been on active duty in the Oxford University Hospitals system. If you’re on social media you have likely come across some of her postings as she has been equally vocal in her praise of the NHS and her criticism of Boris Johnson’s faltering policies, which are often of the too little, too late variety. So I was eager to read her insider’s account of hospital treatment of the first wave of Covid in the UK, especially because her previous book, Dear Life, was one of my top two nonfiction releases of last year.

The focus is on the first four full months of 2020, and the book originated in Clarke’s insomniac diaries and notes made when, even after manically busy shifts, she couldn’t rest her thoughts. Her pilot husband was flying to China even as increasingly alarming reports started coming in from Wuhan. She weaves in the latest news from China and Italy as well as what she hears from colleagues and disease experts in London. But the priority is given to stories: of the first doctor to die in China; of a Yorkshire ICU nurse’s father, who comes down with Covid and is on a ventilator in an Oxford hospital; and of her patients there and in the hospice. She is touched that so many are making great sacrifices, such as by deciding not to visit loved ones at the end of their lives so as not to risk spreading infection.

A shortage of PPE remained a major issue, though Dominic Pimenta (whose Duty of Care was my first COVID-19 book) pulled through for her with an emergency shipment for the hospice – without which it would have had to close. Clarke marvels at the NHS’s ability to create an extra 33,000 beds within a month, but knows that this comes at a cost of other services, including cancer care, being stripped back or cancelled, meaning that many are not receiving the necessary treatment or are pushing inescapable problems further down the road.

From January 26, 2021

A comparison with Gavin Francis’s Intensive Care, published earlier in the month, is inevitable. Both doctors bounce between headlines and everyday stories, government advice and the situation on the ground. Both had their own Covid scare – Clarke didn’t meet the criteria to be tested so simply went back to work two weeks later, when she felt well enough – and had connections to regions that foreshadowed what would soon happen in the UK. Both give a sense of the scope of the crisis and both lament that, just when patients need compassion most, full PPE leads to their doctors feeling more detached from them than ever.

However, within the same page count, Francis manages to convey more of the science behind the virus and its transmission, and helpfully explores the range of effects Covid is having for different groups. He also brings the story more up to the minute with a look back from November, whereas Clarke ends in April and follows up with an epilogue set in August. A book has to end somewhere, yes, but with this crisis ongoing, the later and more relevant its contents can be, the better. And in any book that involves a lot of death, mawkishness is a risk; Clarke so carefully avoided this in Dear Life, but sometimes succumbs here, with an insistence on how the pandemic has brought out the best in people (clapping and rainbows and all that). Her writing is as strong as ever, but I would have appreciated a sharper, more sombre look at the situation a few months later. Perhaps there will be a sequel.

From January 6, 2021

With thanks to Little, Brown UK for the free copy for review.

Some Body to Love: A Family Story by Alexandra Heminsley

From Heminsley’s previous book, Leap In, I knew about her getting married and undergoing IVF. It was also a book about outdoor swimming; I appreciated her words on acquiring a new skill as an adult and overcoming body issues. This memoir continues the story: in 2017, after a gruelling journey through infertility treatment, Heminsley finally got the baby she wanted. But not before a couple more heart-wrenching moments: the lab made an error and notified her that she shared no DNA with this last embryo, and while heavily pregnant she was assaulted by a drunk man on a train. Both incidents left her feeling a loss of agency. “Why was I consistently being deemed the least reliable witness of my own reality?” she asks.

As they adjusted to new life with a baby, Heminsley started to notice that she wasn’t connecting with her husband, D, like she used to. She felt emotionally unsupported and, in fact, jealous of D’s relationship with their son, L. And while they’d never been the most conventional couple, D’s changes of appearance and wardrobe seemed like a sign of something bigger. Indeed, when L was six months old, D told Heminsley, “this body doesn’t represent who I am” and announced a decision to begin transitioning.

As D moved towards having a body that fit their identity, Heminsley, too, needed to get back in touch with her body. After books like Running Like a Girl, she was considered an exercise guru, but she didn’t see herself in the new obsession with Instagram-ready images of fitness perfection. This is not, then, primarily a memoir of queer family-making, because D’s transitioning was not Heminsley’s story to tell and mostly occurs in the background. Instead she focuses on what she does know and can control: her relationship to her own body.

However, this entails what can feel like irrelevant flashbacks to her teenage years of undergoing rehab at a military clinic in Germany for hypermobility, trips to Trinidad and Italy, and the genesis of her two sporting memoirs. Much as I applaud the sensitivity to trans and body issues, the book ends up feeling scattered. Still, the writing is so candid and the narrative so eventful that you’ll race through this even if you don’t normally pick up nonfiction. (For a bit more information, see my short write-up of the virtual book launch.)

With thanks to Chatto & Windus for the free copy for review.

Pain: The Science of the Feeling Brain by Abdul-Ghaaliq Lalkhen

Originally from South Africa, Dr Lalkhen is an anaesthesiology and pain specialist based in Manchester. In a nutshell, his approach is “biopsychosocial,” meaning that he seeks to understand pain not just as a physical phenomenon resulting from acute injury or damage but as an ongoing process that is affected by emotional and psychological factors. Particularly in the context of chronic syndromes, he acknowledges that pain can continue even when its immediate cause has been repaired. Mental preparation can come into the equation: if a patient assumes they’ll wake up from surgery healed, they may be alarmed if pain persists. Lalkhen talks about managing patient expectations, perhaps with something as simple as the promise, “we’ll aim to get your pain down to a 4 after surgery.” In part, he blames Western society’s Cartesian philosophy for treating mind and body as separate rather than a system.

There are genetic and psychological reasons people might be predisposed to chronic pain. Pain itself can then change the brain chemistry, making the body more alert to pain signals. People can choose one of three paths, Lalkhen observes: “You can spend your time agitating about the alarm going off, you can try to ignore it (but the ignoring of it actually takes up more energy), or the final alternative is to learn to live with this deeply unpleasant situation.” Those who opt for pharmacological solutions can become addicted to opiates, which are less effective over time. Non-drug-related therapies involve the desensitization of nerves, the injection of anaesthetics or steroids, or the implanting of spinal cord stimulators. But all of these strategies have their limitations, and can diminish in efficacy. The patients he sees in his pain clinics may be disappointed that, rather than offering a panacea, he wants to wean them off their current pain relief and help them develop a new way of thinking about pain.

I felt I learned a lot from reading this. Lalkhen is careful to state that he is only referring to non-cancer pain (cancer pain in terminal patients will take all the morphine you can throw at it). Like many physicians, he worries about the modern epidemic of overtreatment and our obsession with wellness. I especially enjoyed the discussion of the understanding of pain and its treatment from the ancient world onward, and in particular the history of opiates. The prose is not literary, but this is an accessible and informational read if the subject matter draws you.

With thanks to Atlantic Books for the free copy for review.

 

What recent nonfiction releases can you recommend?

Wellcome Book Prize Shadow Panel & Two Longlist Reviews

I’m delighted to announce the other book bloggers on my Wellcome Book Prize 2018 shadow panel: Paul Cheney of Halfman, Halfbook, Annabel Gaskell of Annabookbel, Clare Rowland of A Little Blog of Books, and Dr. Laura Tisdall. Once the shortlist is announced on Tuesday the 20th, we’ll be reading through the six nominees and sharing our thoughts. Before the official winner is announced at the end of April we will choose our own shadow winner.

I’ve been working my way through some of the longlisted titles I was able to access via the public library and NetGalley. Here’s my latest two (both ):

Plot 29: A Memoir by Allan Jenkins

This is an unusual hybrid memoir: it’s a meditative tour through the gardening year, on a plot in London and at his second home in his wife’s native Denmark. But it’s also the story of how Jenkins, editor of the Observer Food Monthly, investigated his early life. Handed over to a Barnardo’s home at a few months of age, he was passed between various family members and a stepfather (with some degree of neglect: his notes show scabies, rickets and TB) and then raised by strict foster parents in Devon with his beloved older half-brother, Christopher. It’s interesting to read that initially Jenkins intended to write a simple gardening diary, with a bit of personal stuff thrown in. But as he got further into the project, it started to morph.

This cover image is so sweet. It’s a photograph from Summer 1959 of Christopher and Allan (on the right, aged five), just after they were taken in by their foster parents in Devon.

The book has a complicated chronology: though arranged by month, within chapters its fragments jump around in time, a year or a date at the start helping the reader to orient herself between flashbacks and the contemporary story line. Sections are often just a paragraph long; sometimes up to a page or two. I suspect some will find the structure difficult and distancing. It certainly made me read the book slowly, which I think was the right way. You take your time adjusting to the gradual personal unveiling just as you do to the slow turn of the seasons. When major things do happen – meeting his mother in his 30s; learning who his father was in his 60s – they’re almost anticlimactic, perhaps because of the rather flat style. It’s the process that has mattered, and gardening has granted solace along the way.

I’m grateful to the longlist for making me aware of a book I otherwise might never have heard about. I don’t think the book’s mental health theme is strong enough for it to make the shortlist, but I enjoyed reading it and I’ll also take a look at Jenkins’s upcoming book, Morning, about the joys of being an early riser. (Ironic after my recent revelations about my own sleep patterns!)

 

Favorite lines:

“Solitude plus community, the constant I search for, the same as the allotment”

“The last element to be released from Pandora’s box, they say, was hope. So I will mourn the children we once were and I will sow chicory for bitterness. I will plant spring beans and alliums. I’ll look after them.”

“As a journalist, I have learned the five Ws – who, what, where, when, why. They are all needed to tell a story, we are taught, but too many are missing in my tale.”

 


With the End in Mind: Dying, Death and Wisdom in an Age of Denial by Kathryn Mannix

This is an excellent all-round guide to preparation for death. It’s based around relatable stories of the patients Mannix met in her decades working in the fields of cancer treatment and hospice care. She has a particular interest in combining CBT with palliative care to help the dying approach their remaining time with realism rather than pessimism. In many cases this involves talking patients and their loved ones through the steps of dying and explaining the patterns – decreased energy, increased time spent asleep, a change in breathing just before the end – as well as being clear about how suffering can be eased.

I read the first 20% on my Kindle and then skimmed the rest in a library copy. This was not because I wasn’t enjoying it, but because it was a two-week loan and I was conscious of needing to move on to other longlist books. It may also be because I have read quite a number of books with similar themes and scope – including Caitlin Doughty’s two books on death, Caring for the Dying by Henry Fersko-Weiss, Being Mortal by Atul Gawande, and Waiting for the Last Bus by Richard Holloway. Really this is the kind of book I would like to own a copy of and read steadily, just a chapter a week. Mannix’s introductions to each section and chapter, and the Pause for Thought pages at the end of each chapter, mean the book lends itself to being read as a handbook, perhaps in tandem with an ill relative.

The book is unique in giving a doctor’s perspective but telling the stories of patients and their families, so we see a whole range of emotions and attitudes: denial, anger, regret, fear and so on. Tears were never far from my eyes as I read about a head teacher with motor neurone disease; a pair of women with metastatic breast cancer who broke their hips and ended up as hospice roommates; a beautiful young woman who didn’t want to stop wearing her skinny jeans even though they were exacerbating her nerve pain, as then she’d feel like she’d given up; and a husband and wife who each thought the other didn’t know she was dying of cancer.

Mannix believes there’s something special about people who are approaching the end of their life. There’s wisdom, dignity, even holiness surrounding them. It’s clear she feels she’s been honored to work with the dying, and she’s helped to propagate a healthy approach to death. As her children told her when they visited her dying godmother, “you and Dad [a pathologist] have spent a lifetime preparing us for this. No one else at school ever talked about death. It was just a Thing in our house. And now look – it’s OK. We know what to expect. We don’t feel frightened. We can do it. This is what you wanted for us, not to be afraid.”

I would be happy to see this advance to the shortlist.

 

Favorite lines:

“‘So, how long has she got?’ I hate this question. It’s almost impossible to answer, yet people ask as though it’s a calculation of change from a pound. It’s not a number – it’s a direction of travel, a movement over time, a tiptoe journey towards a tipping point. I give my most honest, most direct answer: I don’t know exactly. But I can tell you how I estimate, and then we can guesstimate together.”

“we are privileged to accompany people through moments of enormous meaning and power; moments to be remembered and retold as family legends and, if we get the care right, to reassure and encourage future generations as they face these great events themselves.”

 


Longlist strategy:

Currently reading: The Butchering Art by Lindsey Fitzharris: a history of early surgery and the fight against hospital infection, with a focus on the life and work of Joseph Lister.

Up next: I’ve requested review copies of The White Book by Han Kang and Mayhem by Sigrid Rausing, but if they don’t make it to the shortlist they’ll slip down the list of priorities.