I Lost Part of the World

This piece was written five days after major brain surgery.

It started, as often happens in big disasters, with something small.

dot

A grey dot appeared in my left visual field one day in early June.  I am a novelist, putting in a lot of keyboard hours, and this dot hovered over my left index finger as I typed.  It moved with my eye.  About the size of a pea, it was—annoying, in the way, as I worked to complete the changes for my editor on my second book, ‘At First Light’.  All my energy was devoted to optimizing each word, each phrase, each image.  I had no time or attention to spare this grey dot.

I was also having the worst sinus headaches in my long career of sinus headaches, taking the usual meds, as one does with chronic, familiar pain.

‘It’s a floater’, my friends said, ‘everyone gets them.  Nothing to worry about.’ (A floater is an innocuous, transient defect in the eye, which usually looks like a squiggle or a dot.  Irritating but harmless.)

A week later, after a thorough examination, my optician concurred.  ‘It may last a long time, but clear up eventually. If it changes at all, then go straight to the eye clinic.’  She gave me a leaflet.

The grey dot turned brighter, shimmery over the course of the next month.  I thought it meant that the floater was healing. The headaches abated, but never completely cleared.  A feeling of increased pressure developed inside my skull, an unpleasant addition to the standard sinus face pain.  The final book manuscript was approved, and we started looking at possible cover designs.

shimmer

One day, when my husband was on a business trip on another continent, the vision in my left eye was repeatedly swamped by bright, jagged, colourful patterns and flashing lights.  Panicked now, I went to the eye clinic where, after a thorough examination, the ophthalmologist pronounced that there was no floater, no defect in my eye at all.   He said it sounded like a classic ocular migraine, very common, often comes on in middle-aged women.   Harassed, in a hurry, he told me to get my blood pressure checked, and showed me to the door.

‘But,’ I said, ‘I also have this shimmery kind of…deficit here. When I look at you, your left eye and cheek are blurry.  What’s that about?’

At no point had anyone asked about my medical history, but here it is: I have survived breast cancer three times in seven years.  The most recent was only three months previously, involving my second mastectomy in two years. I sent the manuscript for ‘Isle of Bones’ to my editor the day before the surgery.

Looking thoughtful, the ophthalmologist returned to his seat. ‘Come back in two weeks for a visual field test.’

Those were busy weeks, involving the Marlborough International Jazz Festival, where I was both a performer in an acapella sextet and conductor of a fifty-strong community choir.  The shimmery vagueness in my vision had enlarged, making it difficult to choose my performance outfit.  In the mirror, the left side of my face was pixelated, indistinct, and very disconcertingly mobile. But I sang thirty-two songs from memory, unaccompanied, in close harmony (click here for sample), struggling to make out the starting notes on my list.  The pressure inside my head increased, and I alternated ibuprofen and paracetamol all day.

At home, I took to covering the left lens of my reading glasses with kitchen foil, because my right eye worked better alone. My husband barked with laughter at my distinctly nerdy pirate look.  Using the laptop became more difficult, because I missed the beginning of each line of text on the screen.

shimmer

By the time of the visual field test, the ocular migraines were occurring every other day, in response to bright light.  Not only did I have difficulty making out words, there were other, more subtle changes.  I get sent a lot of books to review, and found that nothing held my attention. If I sat down for more than ten minutes, I fell asleep.  Everything felt like a huge effort.   My thought processes seemed to have shifted down a gear, requiring careful planning of even simple tasks:  pick up knife, chop onion, put in pan.  I went on a singing course, which I do every year, and had to move my finger along the stave to follow the notes.

The visual field test revealed that I had perfect vision, but no perception in half of my left eye and part of my right.

‘So the problem is in my brain,’ I said to the ophthalmologist.  I have a Biology degree. For many years, I was the Neurosciences books editor for Oxford University Press.  I understood the implications with agonising clarity.

‘Yes, it is called scotoma,’ he said. ‘This is caused either by stroke, atrophy, or tumour.  You need an urgent MRI.’

This was the first time that my cancer history came up.  While waiting for the scan, I prayed that I had only had a stroke, because it would heal, and they would give me drugs, and it would not happen again. But I had no risk factors for stroke, or anything else.  I had received the gold standard of conventional treatment for all three diagnoses. Following the first one in 2009, I sanitised my lifestyle and diet to the point where there were Tibetan monks with more risk factors than me.

The ultimate terror for every cancer survivor is to hear that it has metastasised, survived all the cutting and burning and poisoning to seed itself in other body systems.  I also knew that the brain has its own, separate plumbing system, totally impervious to all the heavy chemo drugs that I had been given previously.

I had lived with this threat for seven years, but never, ever imagining that I would actually have to face it.

The MRI revealed a 4cm tumour in the right occipital lobe, the area at the back of the brain which controls visual perception for the left side of both eyes.  On the screen, relative to the rest of my brain, it looked the size of a walnut.  The normal brain tissue had deformed around its bulk, accommodating the invader, giving it room to grow…and grow…and grow.  That was my dozy immune system again, asleep at the wheel.

Occipital_Lobe

The neurosurgeon took us through the procedure.  The single thing in my favour was that the tumour was accessible, right inside the skull.  He was confident of removing it all, leaving me no worse off than I was at present, and a big question about how much of my lost perception would be recovered.

But neither of us, nor my husband, actually appreciated that the tumour had affected far more than just my vision.  Both reading and writing exhausted me, as did following lively conversations and complex ideas.  I had to stare at my fingers on the keyboard in order to type, rather than allowing words to flow from brain through hands to screen.  My memory, already under assault by menopausal hormones, shrank to goldfish capacity. My visual experience of the world became fluid, unstable.  In the mirror, when I passed a finger across the left side of my face, it completely disappeared, then reappeared beside my left ear.

In the days before the surgery, I noticed changes in my gait.  I lurched on rough ground.  With huge exertion, and a large dose of steroids to control the brain swelling, I maintained an outward appearance of normality.

And then I started losing words.

There can be no worse fate for a writer.  Language has always been for me an infinitely large treasure chest, full of colour and sparkle, instantly available to my mind, with effortless enjoyment.  The copy-edits came through and I managed to check them with 180% screen magnification.  But when I tried to read my book again, instead of glittering like jewels in a pool of clear water, the words jumbled.  I had chosen them individually, over the course of a year, judged how the light struck them, the shadows they cast, how they sat among their neighbours, shuffled them around endless times, before committing them to their settings.  All to make the best story possible, the experience that the reader expects and deserves.

They fled from me, all 93,909 of them.

My own words.

My words.

Horrific and strange though this was, terrified as I was of the surgery and its consequences, I felt mainly a dull, almost disinterested despair, like a bystander to the slow destruction of all that was me.  It was as if the tumour had dulled even my ability to produce emotions.  All our plans, all my ambitions, which had seemed so tangible so recently, just…evaporated.  I would be dependent, a burden, cut off from everything that gave me joy or pride or satisfaction.  The future, which had been opening before me like a flower, closed in my face like a fist.

I lay in the golden August sunshine of the garden and wished for a swift end to my life.

This whole process of decline, from the appearance of the grey dot to the removal of the tumour, was astonishingly fast.  It took exactly eight weeks, with the most dramatic deterioration in the final two weeks.

However, the improvement after the operation was far more dramatic.

I woke from five hours of microsurgery, alert and chatty.  I tried a little sing, to check whether the intubation had hurt my throat.  I read the signs on the recovery room walls.  I read the nurses’ name badges.  I told them all about my books, offered to sign copies for them.  Pumped full of painkillers and steroids, I recognised the familiar elation which follows survival of major surgery, but it was more than that.  The pressure inside my head was gone.  One day later, an MRI scan showed that the brain had closed over the space occupied by the tumour.

On day two, I was able to read blocks of text again.

Over the next forty-eight hours, the pieces of myself began to reassemble: the visual deficit remained, but the contours of my hospital room seemed more…stable.  I had conversations with visitors about things other than the hole in my head.  I started to take an interest in the world again.

The best thing for my recovery, advised the surgeon, was to ‘read and write a lot.’  Having expected just the opposite advice, prepared for a long, audio-only convalescence, I felt my spirit return.

I was discharged on day three, and provided my husband with a running commentary on Brexit and the US election all the way home from the hospital.  The words were there again, within reach again, and so were complex thoughts and ideas.

On day four, I was able to use the laptop without staring at my fingers.  I no longer had to plan simple actions with meticulous care.  My muscles obeyed me, my memory was back to its ordinary menopausal crapness.  I completed a load of admin tasks, tiring but error-free. And, in the mirror, I passed my finger across my left cheek as before.  It did not disappear, but neither was it completely visible.  Rather, it flickered in and out, in and out, through the former area of blankness, like a film on slow speed…as if the missing pieces of my world were trying to splice themselves back in.

As a child of the 1970s, I had only one reference point for this experience: ‘Star Trek’.

And on day five, I woke up with the first line of this piece in my head, asking to be written.  The words flowed again, from my brain, through my hands, to the screen.

This is still only the beginning of a long, long road.  The steroids are still controlling the post-operative swelling and giving me an artificial sense of well-being. There is radiation treatment to follow, which will reverse some of the vision improvement—hopefully, on a temporary basis.  It could take up to a year to determine how much visual recovery is possible.

And there is, of course, the far, far bigger question of when…if the next metastasis will occur.  There is no medical explanation for why this happened—therefore, no way to prevent it.   The rest of my life will be a game of whack-a-mole.  I have not yet begun to process this, needing to shield my healing brain from all of that for now.

But I can read again.

I can write again.

I can think again.

I am me.

Again.

This is dedicated to Consultant Neurosurgeon Puneet Plaha, Aneasthetist Helen Hann, and the team of immensely skilled, compassionate professionals at the Neurosciences Unit of the John Radcliffe Hospital, Oxford.

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