THE HOPE THAT NEVER DIED
As a veteran of a leading cancer charity, few knew more about the disease than Henry ... then came his partner’s terminal diagnosis. And, as his haunting new book shows, what followed revealed so much about the power of the human spirit
HENRY SCOWCROFT’S beautiful book Cross Everything may be the most heartbreaking medical memoir you’ll read. Henry, 43, a science writer a a leading cancer charity for 17 years, describes precisely how cancer evolves, adapts and survives, fighting the body’s own defences for supremacy. But at the centre of this searingly painful book is his much-loved, ‘compassionate, hilarious, openhearted’ fiancée Zarah, who died of bladder cancer aged 37 on October 23, 2016, just nine months to the day after she was first diagnosed.
‘Even though I talked and wrote about cancer every day, I realised when Zarah was diagnosed that I knew nothing about living with it,’ he says. ‘I felt as everyone does, desperate to help in any way I could.’
For Henry, that meant talking to everyone he knew in the research world, ‘leaving no stone unturned’ in the hunt for a drug or treatment they could try in the race to buy Zarah more precious time.
Henry and Zarah, a digital marketing manager for M&S, were both in the same group of outgoing friends and got together at a music festival in 2010.
‘We were in our 30s, neither of us wanted children, so life was simple, fun and happy,’ says Henry. ‘We were best friends as well as lovers; we did everything together.’
Zarah had just started a job she loved and the pair were thinking about moving house. Her only health niggle was the urinary tract infections (UTIs) she’d suffered since her teens, which flared up once a year.
‘She had pain when she went to pee, mild fever and sometimes backache,’ says Henry. ‘It was annoying but it wasn’t a major part of her life.’
In 2010, Zarah had been given a cystoscopy — where a small tube with a lens is fed into the bladder — but other than a small area of inflammation, everything looked normal. Her GP continued to prescribe low-dose antibiotics, which she took daily to keep infections at bay.
So when Zarah started to suffer the familiar symptoms in January 2016, she assumed it was another infection. But when she passed a large blood clot, her GP sent her to A&E and she was kept in overnight while specialists examined the results of a CT scan.
‘I’ll know it’s serious if I see a bunch of consultants racing down the corridor towards me with their coats billowing,’ Zarah quipped over the phone to Henry.
That was exactly what she saw next. The scan had revealed a mass in her bladder. The couple were told Zarah would need surgery to remove it for analysis.
‘Although we knew a mass meant it might be cancer, at that point we were very hopeful,’ says Henry. ‘I thought: we’ll go through something horrible and come out the other side.’
Henry immediately called the chief clinician at the charity where he worked, who recommended Zarah should ask her GP for a referral to Professor John Kelly, a consultant urological surgeon.
‘We both felt relieved to know things were in hand, with the top experts on the case,’ says Henry.
But surgery a week later confirmed it was advanced cancer that was growing into her pelvis. Henry describes feeling numb with shock. He held himself together until Zarah dropped off to sleep, then returned to their empty flat and cried.
About 450 new cases of bladder cancer are diagnosed in Ireland every year and while most patients are over 60, any age can be affected. The most common symptoms are similar to those of UTIs — needing to pee more regularly and blood in your urine. Smoking is thought to be a factor in half of all bladder cancer cases — but Zarah was not a smoker. The disease is curable if caught early, but the problem is that recurrent UTIs mask the symptoms.
‘Even with my background, where I discussed cancer every day, the thought never crossed my mind that Zarah’s UTIs might be connected,’ says Henry.
Results of tumour tissue analysis a week later showed it was muscle-invasive transitional cell bladder cancer, the most common type. It was fast-growing — and then came the hammer blow: it was stage 4, meaning it had already spread to the point where it couldn’t be cured, only treated with chemotherapy to buy more time — how much, no one knew.
They left the consultant’s room ashen-faced and shaking, tears streaking down Zarah’s face; Henry holding her hand tightly, determined to do everything he could to help.
In March, Zarah started chemotherapy, which, says Henry, she ‘handled like a trooper’.
At the same time, he enlisted the help of a friend, Professor Charles Swanton, a clinical scientist who was part of a team at the Francis Crick Institute trying to find clues in cancer’s faulty DNA for better treatments. Professor Swanton offered to take samples from Zarah’s tumour and perform sophisticated DNA sequencing to find the gene mutations driving her cancer. The hope was that experimental drugs could be found — there were none.
‘But at the time it felt as if someone had thrown us a lifeline,’ says Henry.
The most promising option now was for Zarah to get onto a clinical trial of one of the new immunotherapy drugs, which harness the body’s own immune system to fight cancer.
‘We were just so incredibly, tearfully grateful to still have options,’ says Henry. ‘What we didn’t know was that the tumour was marshalling its forces and getting ready to come roaring back.’
For as soon as the chemotherapy ended in July, Zarah’s condition went downhill very quickly. ‘Why that happened is one of the great mysteries of cancer,’ says Henry.
‘Chemotherapy is the best treatment we have — it can put a lid on the disease for many patients; but then the disease can somehow become resistant.
‘In Zarah’s case, it seemed to kill all the sensitive cancer cells,’ he adds ‘and the dominant ones were
‘If I see a bunch of consultants racing towards me, it’s serious’
left behind to proliferate.’
And there was more bad news. Further analysis of her tumour by the Francis Crick team showed her immune system was misfiring.
‘As with so many patients, her immune system mistook her cancer for a “healing wound”,’ explains Henry.
‘And instead of attacking, it switched itself off.’ (See book extract, right.)
Scans showed Zarah’s tumour, which she’d nicknamed ‘Tina’, was growing again and had spread to her liver and lymph nodes. She was given more chemotherapy and lost her hair.
She also developed painful lymphoedema in her legs — when lymph nodes are blocked by cancer or removed by surgery, it can cause a build-up of fluid.
Even then, Zarah was stoic. ‘There was always a sense there was nothing we couldn’t take,’ Henry says.
It wasn’t until October, two months after her chemo finished, that Zarah was accepted onto an immunotherapy drug trial. Both she and Henry were filled with hope.
‘Everyone who participates in a trial thinks: “I might be the one who is cured”; we were no different.’
Zarah had her first dose but ‘although she was still able to hold a conversation, she was drowsy a lot of the time’, Henry recalls. ‘It was obvious “Tina” was moving through her body fast.’
Zarah’s oncologist suggested she move to a hospice, yet Henry says: ‘The penny didn’t drop at all. I thought we were waiting for the drugs to work.’
Even then, although Zarah slept a lot, there were moments she was fully herself. Once, Henry and Zarah’s mother, Florence, wheeled her into the garden to share a can of gin and tonic. ‘I don’t think she’ll want it,’ Florence said.
Quick as a flash, Zarah’s arm shot out and grabbed it.
‘That was so Zarah,’ says Henry. ‘She’d never pass up a gin and tonic. She had all these hilarious stories of daft things she’d done. We added this one to our canon of
‘We were just tearfully grateful to still have options’
Zarah stories which still make us laugh and cry now.’
Twenty four hours later, ‘stoic, brave’ Zarah died with Henry’s arms wrapped around her. He recalls: ‘I’d been so focused on keeping us both going, I didn’t see the end coming.’
Although for, Zarah, all the hope came to nothing, the prospect of hope was everything.
‘Knowing immunotherapy was an option, knowing there was a trial, got us through on a day-today basis,’ says Henry.
‘And importantly, the study of Zarah’s samples to try to find cancer’s weak spots will help move treatment on another micro-step for other patients.’
Scientists have known for over a decade that tumours shed their DNA into their surroundings, potentially allowing cancer’s progress to be tracked using blood or urine samples. These ‘liquid biopsies’ are tantalisingly close to routine use and mean cancer progression could be visible in a blood or urine sample before being seen on a scan.
After Zarah died, Henry perchers suaded researchers to analyse her samples, stored in the hospital’s laboratories, as part of a nationwide research programme.
Bureaucratic and logistical hurdles, coupled with Covid, meant the results didn’t come through until mid-2020, four years after Zarah died.
But they confirmed the promise of this technology. The amount of cancer DNA in Zarah’s blood showed her tumour had been on the march far earlier than had been visible on scans.
‘The potential offered by liquid biopsies is huge,’ says Henry, ‘because doctors will no longer have to wait until tumours are big enough to see on a scan to act — this is where we are losing people.’
A year after Zarah’s death, Henry went back to work for the cancer charity. He is also patient editor for The BMJ. But the role he is most proud of is being patient representative for a cancer bladder and kidney research steering group.
He has gathered the ‘lab folks’ who run university research programmes and the ‘clinical folks’ — oncologists who treat patients every day — around a table in hope that the different skills sets will lead to some top-notch ideas for research he can then take to funding bodies.
He would love to eradicate for ever what cancer patients call ‘scanxiety’, when you ‘cross everything’ waiting to see what the next scan will reveal.
Most of all, he wants to inspire the next generation of researchers to work in bladder cancer by passing on something of Zarah’s remarkable spirit.
‘We had a sense that there was nothing we couldn’t take’