Sunday Blog 21 – 23 January 2022

“No, not Lesley, it’s Lencie.”

Book Club, I’m trying to work it out now when it was, but I’m thinking 2006. We’re in Dymocks, Fremantle. The store is owned and run by a family, and the second son Clive is in our newly forming Book Club. I think it is about the third get-together. It is heaven. Each month Clive brings us actual books to look at and we squeal over them, get to touch them and then we decide on the one we will all read. A new member has joined – Lencie. We are a serious Book Club that reads every book and has detailed and sometimes heated discussions about what we thought about each one.

As I listen to her introduce herself, I think how often she must have had to explain the awkwardness of her birth name and how deftly and clearly she covered off on it. Lencie was a staunch Book Clubber from then until now. Some have come, some have gone but Lencie was committed. Clive alas left a long time ago and cut off our crack cocaine supply of new books to pore over for each Book Club.

I am almost positive it was her who articulated the standards for our Book Club. The title can’t be in bigger print than the author’s name, and raised lettering is usually to be avoided, especially if it’s gold. Over the decades we found this served us well.

Mind you, when we didn’t like a book, we would talk about that more than the ones we loved. And occasionally we have been blessed with the presence of the author who comes to debrief their book with us.

I remember the Book Club when Lencie announced she had found a lump on her breast. It wasn’t benign and she began the breast cancer treatment journey (how she hated that phrase – it’s really not a journey any of us would choose…) Those who have had the pleasure of knowing Lencie will agree she has the ability to articulate the difficult realities that others shy away from. She is direct and challenging while also curious and kind.

Thus my Book Club friend Lencie crossed over into my day job at the Health Consumers’ Council and she became a guest speaker at the December 2015 West Australian Clinical Senate. This is a gathering of engaged and caring health professionals who debate key topics. This one was called “The Patient will see you now – Thinking beyond accreditation to focus on the patient experience.” She and I were the only two non-clinical people on the day, but I knew Lencie would more than hold her own.

To quote from the final report:

Ms Wenden courageously delivered an enlightening account of her ‘roller coaster ride’ through the health system once diagnosed with breast cancer.

She described the health system as a big and at times impersonal beast – one in which it is often hard to feel seen and be heard. She shared that she often had excellent care, by excellent clinicians, and that the bad experiences related more to systemic than individual failures.

Highlighted throughout Lencie’s story was the lack of coordination across sites which included her file being lost in the system as she navigated treatment across 7 sites, none of which spoke to each other. The disconnect between hospitals GPs also impacted her care.

Additionally, complications were not addressed or picked up by staff and there were challenges with her ongoing medications.

Clinical Senate Report, December 2015, page 15

For “complications” read nightmares such as full-thickness radiation burns when her treatment was outsourced to a private clinic in the change-over when Fiona Stanley Hospital was being established. Everything that could go wrong with treatment always did with Lencie. At one point in her journey she posted an image that said “Fuck cancer, I survived the treatment!”

And then, around four years ago came the terminal diagnosis. The Lencie Bucket List was established, and as a member of Lencie’s chosen family, I joined in on a number of tasteful, fun and food-soaked outings.

Last Tuesday after a long-ish hospital admission she was told she wouldn’t last the day. She had also been told in the morning that her tumour markers were down and she could have 2-3 months left to go. It was a confusing, jarring experience for us around her, let alone for Lencie herself. Did she have 2-3 months or 24 hours? As it turns out, neither. She remains an oncology patient under palliative care, and the bumps and cracks between these teams were constantly evident. Her chosen family members and some family members too have been by her side, checking over and over again with the caring but somehow hamstrung treating team if the symptoms can’t be more relieved? She can’t be moved to the hospice so she has to stay on the cancer ward. They do their best, but it’s just a different way of caring.

I think back to her brave Clinical Senate presentation in 2015:

Lencie’s story identified the challenges clinicians also grapple with in relation to a large system, where consumers get lost and can feel like a number, not a person. She highlighted the many missed opportunities for better care through a lack of communication.

Clinical Senate Debate report, December 2015 page 16

Isn’t it a shame that not enough has changed between then and now? As I write she is still with us, and it’s so unclear if some of the comfort measures are actually prolonging the suffering. She is still here, but she’s no longer Lencie.

Rest easy dear Lencie. We will have an empty chair for you at our next Book Club meeting. It was your choice, The Man Who Mistook His Wife For A Hat and I was trying to comfort you a little in your last days reading it out loud to you. But you promptly fell fast asleep. You woke up eventually and said;

“That book is pretty dry isn’t it.”

A book fiend right to the end.

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