Friday 30 September 2016

Late Fragments... Life after Kate Gross

Kate Gross died of cancer on Christmas Day, leaving behind a poignant memoir written for her sons. Her husband, Billy Boyle, recalls her last days

Louise France

Published 02/04/2015 | 02:30

Billy Boyle gets to grips with life at home with his two boys, without Kate Gross, who died of colon cancer on Christmas Day.
Billy Boyle gets to grips with life at home with his two boys, without Kate Gross, who died of colon cancer on Christmas Day.
Kate Gross and Billy Boyle with their kids
Kate Gross with her husband Billy and their sons Oscar and Isaac
Kate Gross with husband Billy in 2004
Late Fragments book cover

In November, I met Kate Gross, the former British civil servant and charity CEO who turned her diagnosis of terminal colon cancer into an extraordinary memoir, Late Fragments

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During our conversation I wondered how her husband, Billy Boyle, was coping with his wife's illness. She was 36, the same age as he is now. They had twin five-year-old boys, Oscar and Isaac. She had, she thought, just a few months to live.

Boyle, I imagined, was having a dreadful time.

While her love for her husband was palpable (in Late Fragments she describes him as, "My north, my south, my east, my west") and Gross's instinct was to answer a direct question with a direct answer (what point obfuscating when time is limited?), whenever I asked, "How is Billy?" she would look away. "You'd have to ask him," she said.

Four weeks later Gross died, on Christmas morning at 6.29am. Just enough time for Boyle to hold her hand and say goodbye before their twins woke up to ask, "Is it morning?" and find their stockings.

Boyle's wife had always been talented. At 26, she was writing the script for the Queen's Speech at the state opening of parliament. She was Tony Blair's private secretary for parliamentary and home affairs. Latterly, she was the CEO of the Africa Governance Initiative, a charity working in some of the most fragile countries in Africa, work for which she was appointed OBE.

To that list of achievements we can now add bestselling author.

The book she wrote for her sons, published 10 days after she died and three days before her funeral, has become a word-of-mouth phenomenon. There are some who say it will become a classic of its kind, in the same way as John Diamond's C: Because Cowards Get Cancer Too.

There is something remarkably galvanising about her vivid, unsentimental, steadfast account of what it means to die - and to be alive. Gross's death would always have been marked by many. Her former boss and friend Tony Blair wrote a moving tribute: "She didn't always know that she would die young. But she lived as if she might."

But the book, the blog that inspired it and her journalistic pieces before she died, have meant that Gross's death has touched many beyond Westminster and her family and friends.

Since hearing about her death I, like many of her readers, I suspect, have often returned to my unanswered question. Gross had written, "I am the lucky one because I never have to lose Billy." (In many ways Late Fragments is as much a love letter to her husband as a memoir for her sons.) Through the leftovers of one year and the growing pains of the new one I wondered, how is Billy doing?

Billy Boyle and I sit in a bare, functional meeting room in the small headquarters of the technology start-up company, Owlstone Nanotech, he co-founded in 2004, around the time he and Gross went on their first date.

Born in Belfast, he is a Cambridge University engineering graduate. I had been struck by how young Gross looked when we met. The same goes for Boyle - he looks far too fresh-faced to be a widower.

How are you doing?

"People feel they have to ask," he replies. He speaks slowly and deliberately, keeping in check both his words and his emotions.

"But equally they might not want to know the full answer. I have developed a stock answer. Overall, we are getting on with things. That is largely to do with the boys. Five-year-olds live in the present. They force a huge amount of normality that in turn makes it easier for the big people, the grown-ups, to manage."

That is the stock answer. What is the other answer?

"That is 80pc true. But then there is the thing of what happens when they go to bed." His voice thickens.

"I don't think there is an algorithm for grief. Your feelings change frequently over a very short period of time. In the evening the boys are running about and I am having a great time. The sound of their laughter upstairs floats down and helps when I am sitting on the sofa.

"But then they go to sleep. It gets quieter. And sadder. And the sadness creeps in."

Boyle says as much in his silences as he does in his replies. Over the next hour or so he is articulate, thoughtful, honest. We even laugh, mostly about small boys and their obsession with death - "They're grisly things, aren't they?" But there are times when words cannot convey the loss.

He looks at me over the table and his eyes fill with tears. Often, he talks about Kate in the present tense.

Gross's book ends in the autumn of 2014. She was not, yet, in pain. Not much of the time, at least. By December she knew time was running out, and the day after we met she was given the go-ahead for clinical trials. Like a stonemason chipping at a piece of unwieldy granite, she hoped an untested drug could buy her more time with her boys.

Boyle recalls the events of those last few weeks, but it's clear that some of it is a blur now, befuddled by the unhappy pairing of adrenaline and exhaustion.

"You weigh up the benefits of new drugs," he says. "You don't know if it will do anything. Chances are, it won't. You're going to spend all day in hospital and you don't have a lot of time left. Is that really the best thing to do?

"In the end, the decision was made for us by the fact that the disease spread very quickly."

One night sticks in his mind - a bleak midwinter 3am dash to Addenbrooke's Hospital because the pain was so bad. "The day after, it got worse still. At that point, the hospice thought she didn't have much time left."

Kate wanted to die at home, in a room at the top of the house, with a window overlooking the eucalyptus tree in the garden. What were those final weeks like?

"There is an odd day-to-day routine," he replies. "The nurses coming in, the pain medication, switching the syringe pumps, trying to get Kate into the shower when she felt able to. There is a strange rhythm to the day and you just have to be there, basically."

In her book, Gross wonders if Billy ever wishes he had an "ordinary wife he didn't have to nurse. An ordinary marriage. Whole days without having to think about cancer or the latest clinical trials or pain relief."

Did he ever feel like he didn't want to be there?

"No, never," he says. "It was probably the most important thing I have ever done. Caring for someone like that is part and parcel of love. It is one of those unspectacular things that people do every day. We saw families who slept on the hospital floor night after night. It is one of the things that comes with love."

The couple left the door open so that the boys could wander in if they felt like it. "We had spoken to people who had lost a parent when they were young and it sometimes felt to them that the person suddenly disappeared."

But, over the days, Gross began to fade. She could not eat or drink because of the blockage in her colon. The morphine meant that Gross hallucinated, which she hated. Mostly, she slept. When she wasn't sleeping she was often in pain - it sometimes seemed that the cancer was always one step ahead, despite the pain-relief.

"At some point there is an acceptance," says Boyle. "She was sick and unconscious most of the time. Somewhere between life and death. It is not fully living and it is not someone who has died."

Gross had talked to me about the dilemma of when to tell their sons that she was going to die, that "Mummy's tummy hurt" was not going to go away. When we met, that conversation was still to happen. It fell to her mother, Jean, to sit down with the boys.

How to explain something as abstract as time and death to children who, at that age, live so intensely in the present? Poignantly, Boyle recalls how his mother-in-law used the advent calendar to explain the passing of the days.

"Then she brought them in to see Kate and me. Kate was in bed. I was there. Then I brought them downstairs to talk to them." There's a long silence. "That was hard," he says.

He describes the surreal quality of that Christmas morning in short sentences. "It was driven by the energy of the boys. We did the stockings. We told them. We asked if they wanted to see her one last time. They didn't. Christmas traditions unfolded. Presents were opened. The turkey was roasted." Later in the day, Isaac asked to see his mum and his father went with him.

Gross, a self-confessed control freak, had left nothing to chance. She had planned her own funeral (including a rousing rendition of Sing Hosanna, because she knew the boys had learnt it at school). Boyle was worried, at first, about the twins' attendance.

"But I asked people who had been through the same thing. All the people the boys love were there in one place, which was a tremendous support for them." They each put a stone collected from a beach in Norfolk on her box of ashes.

By the time of the funeral, Late Fragments was already beginning to sell well. "Amazon has got it wrong," he told the people gathered to remember the life of his wife. "They have her book listed under 'Death and Dying'. But that is only part of the story. What it is really about is life and how to live it."

The postman still comes with letters from people who have read Late Fragments and feel compelled to get in touch. I suspect that for Boyle, who had no idea that his wife was such an exceptional writer, there has been an unforeseen benefit of the book she wrote on her laptop when he was at work and the children were at school. The book is Kate. Her voice sings from the pages.

"Immediately after she died, it became my go-to book for how to get through the day." The fact that so many other people agree with him somehow reaffirms what they had together.

On the television in the living room he has a rolling loop of photographs from when they first started dating - they met at a poker match she had organised - through to the boys being born and on, via her diagnosis to her final few months.

"It is great," he says. "Because …" And there is a long pause, as though he has been reminded again, as he must be all the time, of what has been lost. "Because those memories, they cannot be taken away."

It was in October 2012 that Gross discovered that the digestive problem she had suffered from for years, and had been missed by doctors, was colon cancer. On a flight home from California, she fell ill. After she landed, she took a taxi straight to hospital and rang her husband. "I feel s***. I am going to get it checked out," she told him.

Boyle recalls: "I remember the doctor saying it might be cancer, or Crohn's disease, or twisted bowel, and your brain immediately is horrified but fixes on the non-cancer things."

He met her at the hospital and accompanied her to the doors of the operating theatre. He remembers being so disorientated and overwhelmed that he couldn't find his way out of the hospital and breaking down in front of a nurse.

At home, he waited for the consultant to call, sleeping fitfully. At 2am, the phone went. His wife, he was informed, had stage 4 colon cancer. "I went back to the hospital. She had just woken up. I told her." His sentences are clipped, bleak. "Nothing good about it. Every increment was awful."

After the shock of diagnosis, Gross wrote movingly about how her last two years had been "strangely luminous, full of exploration, wonder and love". Did Boyle - the nurse, not the nursed - feel the same way?

"I do, actually," he says. "When you know time is limited, you dick about less, basically. Of course we argued. But we had amazing times. The non-essential bits are stripped away."

It was Boyle, the scientist, who researched his wife's illness, trying to find the best treatment. Meanwhile, at work, his company developed a groundbreaking diagnostic tool that can detect colon cancer early by identifying a unique smell in the patient's urine. It was too late for his wife, but he is hopeful that it might save the lives of others.

At night, Gross kept a blank book beside the bed in which she would scribble the occasional sentence. Boyle would ask her what she was doing. "You'll see," she replied. It turned out she was writing him secret notes for after she had gone. His mother-in-law left them for him on the bed after her daughter died.

"Some of them are practical - where to find the dishwasher manual. But some are, 'How to be.' She says she wants the house to be a place of laughter, not sadness. So that sticks a rocket up my arse every day," he says. "I have got to do that, for her, for the boys."

She used to tease him about his RoboCop tendencies. He is good, he says, at the practical stuff. The school uniforms, the teeth-brushing. He stands outside the boys' bedroom and listens to them chat before they go to sleep, alert for anything in between the conversations about Minecraft that might indicate they are not coping.

The other night Oscar said, "Everything dies eventually," and Isaac agreed. "No one lives to infinity," he said. For now, so long as the boys are reassured that their father isn't going to die too, they seem OK.

Meanwhile, what Boyle takes comfort in is talking about Kate. With the boys, with her parents and sister, with her friends. The Kate Show, he calls it, and it is, perhaps, one of the reasons why he has agreed to talk to me today. It reminds me of something Gross wrote in her book: "I suspect that for a long time my little family will no longer be four people, but it won't be just three either."

She is right here, with them still.

'Late Fragments: Everything I Want to Tell You (About This Magnificent Life)' by Kate Gross (€13.80, William Collins) is out now.

Irish Independent

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