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Miles to Go Before I Sleep: Letters on hope, death and learning to live, by Claire Gilbert

26 March 2021

Caroline Chartres reads letters written to ‘make sense of things’

DIAGNOSED with myeloma, an incurable cancer of the blood, Claire Gilbert (Features, 19 March) began writing to her siblings and a group of close friends about what she was going through: “writing has always been my way of trying to make sense of things.” These letters, covering the 14 months from her diagnosis to the first lockdown, asked for no reply, but enabled her to “tell the whole story . . . the most visceral, revolting human physical side of it, as well as the extraordinary transcendent joy of it”.

All-pervading and inoperable, with the excruciating bonus of bone-marrow biopsies, myeloma is right up there at the top of the list of cancers you really wouldn’t want to have. Gilbert is plunged into a world of acronyms (PET/CT/MRI), and a lexicon of multi-syllabic drugs: Dexamethasone, Carfilzomib, Cyclophosphamide. She struggles with the irony of embarking, while feeling well, on a course of treatment that will make her feel ill (“it has struck me how much of what I am being put through would, in the hands of a hostile other, be classed as torture”); with the surrendering of control; and the shrinking of the world and the daily agenda to the next round of chemo, the four walls of the treatment room.

But she doesn’t lose sight of the world outside (the environmental crisis, Brexit, Extinction Rebellion), nor her sense of humour (one of the worst side-effects is “hav[ing] Donald Trump in my nose!”); and the uncertainty of her prognosis serves to intensify her appreciation of the natural world: she writes beautifully of the pleasure that she derives from riding in the countryside, walking through a park, or the energy of the sea and the wheeling of the gulls.

In her professional life, Gilbert (the founder Director of the Westminster Abbey Institute) is a published authority on research ethics; now, as she is assigned to a randomised clinical trial, these cease to be abstract and become intensely personal. She reflects on freedom and consent: “I make [all my decisions] based upon inadequate information, often feeling I have no choice”; but consent “still matters because I have to take moral responsibility for my acts, even though I’m only partly in control of them”. She recognises the crucial importance of trust in her medical team in affecting the outcome of the treatment — even though “it will be the mistakes in my treatment that will lead to more learning.”

One of the things that she dreads most is the loss of her hair, but her pre-treatment “shriving”, at the hands of a Kurdish barber, turns out to be a mutual benediction. And it is this sense of the sacramentality of the ordinary which lifts Gilbert’s book well above the ordinary. She spares her “Dear Readers” no detail of the grimness of her treatment — including Melphalan, a derivative of the nitrogen mustards originally used in chemical warfare, now adapted for chemotherapy (“I do not think that any human being should give another human being Melphalan”) — but everything is seen through the lens of faith, and her spiritual observations are as unflinching as her physical ones.

Her preparation for confession exposes a stratum of furious anger and resentment: “I have tried so hard in my life to do the right things and think the right thoughts and believe the right beliefs, and what happens? I get cancer. This is my reward.” But she draws on St Ignatius “when he guides you to feel your way to your place of desolation. You don’t try to deal with it or be rid of it. You quietly sit with it. . . ” And, having written her doctorate on Julian of Norwich, now it is Julian’s writings that sustain and enlighten her: “When you are falling, dive.”

Facing again the fact that her cancer, even with remission/s, will be lifelong, “I breathe, receive again the knowledge of my mortality, accept it, turn it to good use: making art of my life… And find joy today.” This is not a book about dying, but, rather, a book about how facing death enables us truly to live.

Caroline Chartres is a contributing editor to the Church Times.


Miles to Go Before I Sleep: Letters on hope, death and learning to live
Claire Gilbert
Hodder & Stoughton £16.99
Church Times Bookshop £15.30

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