The brain researcher who was diagnosed with a brain tumour

by Clare de Lore / 22 April, 2018

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Louise Nicholson.

Louise Nicholson.

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There’s an obvious irony in Louise Nicholson’s life story: after decades trying to find cures for diseases of the human brain, she’s now living with an inoperable brain tumour. Few people could be better suited to deal with such a diagnosis.

An emeritus professor of neuroscience at the University of Auckland, Nicholson grew up in Auckland. Her American father, William Green, met her mother, Beryl Hobbis, when he was on leave from service in the Pacific during World War II. After the war, he returned to New Zealand to marry her. He became a dentist and she taught at Epsom Girls Grammar School.

The second of their four children, Louise went on to marry Jon Nicholson, a marine scientist who founded Biomarine, a seafood exporter. They have one son, Jonathan, and three grandsons. When Jonathan was five, Louise took him with her to Oxford University so she could take up a postdoctoral Rhodes Fellowship (now Scholarship). Jon stayed in New Zealand to establish his marine farming business; they were apart for two years.

Louise was the driving force behind the establishment of the Spinal Cord Injury Research Facility, part of the world-leading Centre for Brain Research founded by Professor Sir Richard Faull. Last year, she and Jon marked her retirement from the University of Auckland with a donation of $1 million to fund studies into spinal cord injury, the largest single gift to the university from a departing academic.

The Nicholsons live near Warkworth, north of Auckland, and Louise’s diagnosis aside, they say life couldn’t be much better.

Retirement morning tea at the Centre for Brain Research with husband Jon and centre director Sir Richard Faull.

How was your brain tumour discovered?

I had increasingly severe headaches for seven years that were wrongly diagnosed as sinus-related. Finally, in 2014, I became almost incapacitated with excruciating pain. The tumour they discovered had got so big it was blocking an outflow from the fluid-filled cavities in the brain and the fluid was building up and causing pressure. I presented under CT scan with hydrocephalus and they quickly moved me from North Shore Hospital to the neurosurgery department at Auckland City Hospital.

What was the outcome of the surgery?

My surgeon was paediatric surgeon Andrew Law; he’s famous for operating on that Rolling Stone [Keith Richards] who fell out of a tree in Fiji. Because these types of tumours are more common in children, I was on his list, and he managed to create an outflow in the floor of one of the cavities that drains the fluid. It can’t build up any more.

The tumour is still there, but it’s growing very slowly. A biopsy showed it’s made up of one type of cell that’s an outgrowth of the pineal gland. It can’t be treated with radiation because radiation works on fast-growing cells, which is why people’s hair and nails are a problem with radiation or chemotherapy treatment.

3D reconstructions of Louise Nicholson’s brain tumour (circled), which she created to determine the change in volume.

3D reconstructions of Louise Nicholson’s brain tumour (circled), which she created to determine the change in volume.

Is more surgery possible to remove or reduce it?

The tumour has two very big veins going through it. When Richard Faull and I looked at the CT scans, we marvelled at this thing. It’s absolutely defined. When you put an opaque tracer into the blood, it shows up very well because it’s so vascular. The risk of trying to remove it is a bleed that can’t be controlled, so it stays there, and I have a mechanism, a funnel, just under my skull that means if there is any fluid build-up, it can be easily drawn off.

It’s ironic that you’ve ended up with a brain tumour.

I was recently watching the TV news about [first sub-four-minute miler] Roger Bannister dying. When he was interviewed five years or so ago, he noted the irony of being a neurologist and then getting Parkinson’s disease. I felt a bit like that too, as a brain researcher with a brain tumour.

Discussing research findings with Spinal Cord Injury Research Facility director Dr Simon O’Carroll.

Is knowing as much as you do helpful or scary?

I find it incredibly helpful. It was a relief to know something was really wrong, because a bit like with back pain, you don’t get much sympathy for headaches. You’re not dripping blood and people can’t see what’s wrong with you. I was spoilt in hospital – my neurology and neurosurgery colleagues aren’t used to patients asking so many questions. We even drew straws early on about what was causing the blockage. I’m annoyed I got it wrong, but I’m pleased my surgeon got it right – although, to be fair, he had seen it before.

You’re from a family that was big on education – were you a bookish child?

It’s a funny thing. I grew up in a house full of books, but my father would remark that I never read for pleasure. I buried myself in scientific books. I have every book written by Richard Dawkins, many of them signed by him, from my time at Oxford. My mother gave me some of them, and she wrote in one, A Devil’s Chaplain: “Read this chapter, Louise, a prayer for my daughter – ‘Good and Bad Reasons for Believing’.” It reinforced my belief in science and asking questions.

One of my friends at Oxford was horrified I wasn’t well read, so he lent me books by Peter Ustinov, Spike Milligan and John Fowles. I really enjoyed them, especially John Fowles, and read more and more of his.

Wedding day with husband Jon.

Wedding day with husband Jon.

What about recently, since you retired?

I’m enjoying historical fiction. There’s an excellent series of four books by Elena Ferrante called the Neapolitan Novels, about a friendship between two children that follows their lives through to 65-plus. I enjoy books by AS Byatt and Margaret Drabble – they’re sisters, but you’d never know. Their writing often references parts of the UK I’m familiar with. And right now I’m reading The Guernsey Literary and Potato Peel Pie Society by Annie Barrows and Mary Ann Shaffer. It’s about the German occupation of Guernsey.

You and your husband have given $1 million towards spinal cord injury research. Are you looking for a cure or better care for those with spinal cord injuries?

When we decided to make this donation, it was a way of thanking the university for the things we’d both got out of our education there. Our son went to the University of Auckland too, and one of our grandsons has just graduated. When we told them of our plans, they said, “Go for it.” Other friends have said their families would go berserk, but we’re all happy. We’re definitely looking for a cure for spinal cord injury and this money will fund PhD students in their research.

I’m passionate about getting people out of wheelchairs and back on their feet. We’re close but not quite close enough, and we need to push that very hard. It’s not just for the individual – it’s for their families and for the country. The cost to ACC is phenomenal. My training in neuroscience has enabled me to understand so much better what the problems are with spinal cord injury.

At a fundraiser with Richie McCaw and Sir Richard Faull.

At a fundraiser with Richie McCaw and Sir Richard Faull.

What are the pleasures of retirement?

It didn’t take me long to wonder how I ever worked 75 hours a week and ran a household from a distance. For years, I camped at our flat in Auckland from Monday to Friday, leaving my husband at our lovely home overlooking Kawau Bay so he could pursue his marine farming business. My weekends were frantic, so I’m enjoying the slower pace.

Jon’s a keen sailor, but until now I’ve not had much time to go on the boat. We went out on Kawau Bay yesterday and to Moturekareka Island. We were the only people there and both of us said, “Aren’t we lucky – we don’t have to go to the Bay of Islands or the Mediterranean.” It’s amazing – New Zealand is so beautiful. We’re loving this time of our lives.

This article was first published in the April 7, 2018 issue of the New Zealand Listener.

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