Inspirational Stories

Coming to Terms with Brain Tumour

Two and a half years ago, Jason Burberry, 33, was diagnosed with aggressive brain cancer and told he had about 24 months to live. This devoted Torbay husband and dedicated father of three talks to Cathy Withiel about how he handles living with dying.

It takes courage to talk publicly about dying. But courage is something Jason Burberry has plenty of.

North Shore Hospice is helping Jason and his family cope as he lives on borrowed time.

So, if he can raise public awareness of what the hospice does to help it raise desperately needed funds, then he’s quite prepared to tell people what it’s like walking around with a tumour the size of an elongated apple in his brain.

It’s this practical down to earth philosophy that keeps this giant, teddy bear of a man going. It also helps having an irreverent sense of humour and the ability to see the funny side of everything – even when staring death in the face.

“It’s my wife and kids I worry about. I love them so much. They are my whole life,” Jason says.

Two and a half years ago, Jason counted himself the luckiest man in the world.

He was relishing his hard earned promotion as manager of an Albany warehouse and was good mates with the guys there. And, as always he was cherished by his loving family: his beloved wife, Maria, and his children, Anthony, now 15 and at Long Bay College; Ashley, 10, at Long Bay Primary and Grace, 4, who is at kindy.

Then the bombshell hit.

The fit and trim former top Auckland school rugby player came down with a bad headache on December 29, 2000. He periodically suffered from migraines so was not unduly alarmed. He went off to the doctor, got a jab and some tablets and waited for the pain to go away.

It did. But two days later, on January 1, he felt a tingling down his left side, lost his speech and collapsed on the floor at home. He was rushed to hospital and, after X-rays and a biopsy, Jason and Maria were given the shattering news.

It was an aggressive tumour in the brain, and even with chemotherapy, he was looking at around two years of life. Because it was inside the brain, operating was too tricky and could leave him a vegetable.

“I told the doctor: I suppose I don’t have to worry about giving up smoking now’ and the doctor agreed. And then I said an operation was out of the question because I’ve never really liked vegetables.”

When reality hit home, Jason and Maria were numb with shock. They knew they had to tell the kids, and as soon as possible.

He is unable to stem his tears as he recounts: “The kids were very upset, they still are.”

One Christmas, Ashley wrote a letter to Santa: “All I want is for Daddy to be around for my 21st birthday.” Jason and Maria sat around the tree and wept when they read it.

The kids constantly hug and touch him, as if to reassure themselves he’s still there and repeatedly say: “Love you, Dad”. Anthony will ask his Dad up to five times every day before supper if he’s feeling OK, and again before the family goes to bed.

Although Jason has had extensive oral and intravenous chemotherapy and radiotherapy to hold the cancer at bay, he doesn’t feel sick and has no physical pain. He hates not being able to work.

His only symptom is that he’s gained a lot of weight through steroids, he’s unfit and gets tired easily. He laughs: “Maria recently gave me a fat Buddha she said looked like me.”

The pain is all in his heart.

A hospice nurse visits every week and, although the family carries on as normally as possible, they cherish the time they have left. They sit around the supper table most nights and talk, openly and freely, about their lives, their hopes and their fears. Jason reads to Grace every night.

Ever practical, he busies himself creating tangible memories for his children and for Maria.

He’s bought them each a trinket box, engraved with their names, and he’s filling it with personal mementoes. Bits of jewellery, photos, his onyx ring for his son, his favourite childhood book. And letters for each of them, telling them how much he loves them. He’s also taping himself on video.

Jason has kept aside locks of his hair. “If they think it’s gross they can chuck it away. But maybe they’ll want to stuff the hair inside a teddy or something, so they can always cuddle a part of me.”

He constantly looks for ways to make memories. The family was at the beach recently, and the kids brought him beautiful shells they’d gathered. He told them to look for shells with holes in them, and threaded them together to make necklaces for them.

With help from the hospice, he’s written a book about his life history and recounted little stories from the past 33 years of his life. It comforts him to know the kids will pass this on to his grandchildren one day, so his memory can live on.

Jason’s grateful he’s been able to prepare himself and his family for his death and to make peace with all those around him. The already close-knit family has grown even closer, their love is almost tangible. He’s more patient with people, he listens more.

But he’s frustrated there’s no deadline and he doesn’t know when he’ll go. And although he understands why, he’s also saddened that some acquaintances avoid him because they feel awkward about his illness.

Jason sets himself little goals. The next milestone he’s aiming for is to be around when Grace starts primary school in November. And he’d like to spend another Christmas with the family.

He’d also love to take the family to play in snow – the kids and Maria have never seen snow before. But money is tight, the car is on its last legs and the family’s electrical appliances keep giving out.

He’s not bitter – “there’s no time for that, it doesn’t help”. Both his father and his grandfather died of brain cancer, and he thinks it may be hereditary. For this reason he’s grateful that Anthony is his son in every way, other than biologically.

“But make no mistake, he’s my boy, I raised him, he’s all mine. I love him just the same as my girls.”

Although he talks openly, Jason isn’t given to flowery phrases. And actions often speak louder than words.

He has a tattoo on his back for each of his children, with their names underneath. A Viking for Anthony, a rose for Ashley and a unicorn for Grace. There’s no tattoo for Maria. She’s engraved in his heart.

“Marrying her is the best thing I’ve done in my life. I met her when she was a young mum bravely raising baby Anthony on her own and living in one half of an old-style house in Avondale. I rented the other half. She would watch me come home from work, and we got friendly.”

Six weeks later he proposed and 11 months later they were married.

“I love that lady very much. She fills my heart. She’s my rock, she’s always there for me. I can’t really explain how I feel about her, she’s my everything.

“When I’m down, she pulls me up. She’s my caregiver, she’s been with me for every single doctor’s visit, every single test. I know she’ll do a wonderful job of bringing up the children when I am gone”.

He’s also deeply grateful to the hospice. “They do a fantastic job, and I can’t thank them enough for all they’ve done for us.”

Written and published by Cathy Withiel for the North Shore Times Advertiser - Tuesday, May 13th 2003. Photos by Paul Restall, North Shore Times.