Dying to make the most of life – Andy Priest on his last summer.

Andy and Lou are friends – and terminally ill. For both, life’s priorities changed dramatically when they found time was limited

By Joanna Moorhead

Lous Street
Lou Street with three of her children, Danny (17), Ria (9), Mimi (6), and granddaughter Imogen (3). Photograph: Linda Nylind for the Guardian

Andy Priest has a life that might sound enviable. He and his wife Annette have been together for 15 years, but are closer than ever. They live in a Suffolk village with their six-year-old daughter, Isobel, and Andy says he spends far more time with her than many fathers manage to spend with their children. Over the past couple of years he has radically readjusted his personal compass. “I used to work all the time,” he says. “I was very materialistic – it was all about having stuff and buying labels. Today, I’m a much more pleasant person: I’m empathetic, and I make time for people. I know what matters most in life – relationships and family.”

Andy Priest: ‘I don’t think of myself as dying: I know the disease I’ve got is going to kill me, but I don’t know how long it’s going to take to do that.’ Photograph: Richard Ansett/Channel 4

But there is a caveat in his idyll, and it’s a big one. Andy, 48, is dying. Aggressive treatment for leukaemia has left him with terminal lung damage. “I can feel the disease getting worse each day,” he says. “I know time is running out for me.”

Eighty miles away in Kent, Andy’s friend Lou Street, 39, is also dying. Life for her revolves around home and her family: she and her husband John have two daughters, Mimi, six, and Ria, nine, and she also has two older children by previous relationships and a three-year-old granddaughter, Imogen. Lou has motor neurone disease. So far, she has outwitted her doctors: in December 2010, they gave her two and a half years to live. But she knows she can’t cheat death for long: there’s no cure and the type she has is always fatal. So, like Andy, she concentrates on making every day count.

Andy and Lou became friends after they agreed to participate in adocumentary series for Channel 4. It’s a kind of Big Brother set in a picturesque country house in Gloucestershire, but the five housemates are terminally ill.

 If that makes it sound mawkish or grim, it really isn’t: there is sadness and there are regrets, but most of all there is plenty of laughter, lots of fun, tenderness, honesty and plain speaking. The dying have much to teach the living: so in many ways, this project is the zenith of the Big Brother experiment. At long last there’s a real point to watching the minutiae of interaction between a group of strangers thrown together by a television production company because this time their concerns and conversations are littered with nuggets of insight and humour from which we can all learn.

Both Andy and Lou say their priorities changed dramatically after they were given a terminal diagnosis: but for one of the housemates in the series, the shift was seismic. With just months to live, 58-year-old Jayne Pritchard Jones decided to leave her husband: he hadn’t been supportive when her condition was diagnosed, she said, and she could see no point in them staying together for whatever was left of her life. She also decided to embark on a last-ditch search to be reunited with the son she gave up for adoption when she was 17: in the film, she is seen agonising over whether it would be better for him to meet his mother while there was still time, or whether introducing herself when she was dying was worse for him than never knowing her at all.

Ann Munro, a palliative care psychotherapist who was a consultant to the documentary and appears in it, says a terminal diagnosis is often accompanied – where an individual is living a life they know is unfulfilled – with a kind of mid-life crisis moment; though even within that context, she agrees that Jayne’s decision to leave her husband was extraordinary – and extraordinarily brave. “Many of us stay in a relationship or a job because it feels like the easy thing to do. But when you are confronted with a much shorter lifespan, it sometimes suddenly seems essential to change whatever needs changing for at least the time you have left.”

 

Andy Priest: ‘I don’t think of myself as dying: I know the disease I’ve got is going to kill me, but I don’t know how long it’s going to take to do that.’ Photograph: Richard Ansett/Channel 4She has seen it many times, she says. “Being told your future is limited focuses the mind in a way that nothing else can; and the tragedy is that it takes something this appalling to happen before a person ends up living the life they really wanted to live.”Since the documentary was filmed, Jayne has died; so have the other two housemates, Ben Leggett and Junior McDonald. Unsurprisingly, Lou and Andy, the two surviving participants, took the deaths especially hard, but both say they are grateful to have had the chance to get to know others in the same situation.What is odd about dying is that, although it is the one universal experience we are all guaranteed, being in the countdown phase can feel uniquely lonely. “It’s one thing to know you’re going to die at some point and quite another to have the clock ticking,” says Ann Munro.Lou says that finding out she was dying made her feel quite separate from everyone around her. “Your family and friends don’t experience the world as you experience it any more. What was brilliant about the documentary was that it put us in a situation where we were surrounded by other people who did understand, and were going through exactly the same things. They weren’t just nodding and saying ‘I know’ when they patently hadn’t a clue; they were in the same boat.”Sometimes one of the others would do something that might seem odd, like texting in the middle of the night. “They knew I’d understand. We’re on a quite different path from other people. We are living outside the normal boundaries.”It is also a very different experience to find you are dying in your 30s or 40s than when you are in your 80s or 90s. “When someone else in the house said they knew what I meant about sleepless nights, or about my lack of sex drive, they really did understand,” says Andy. “There are things you can’t talk to many people about.”That is partly because the dying person may feel a need to protect others. That realisation has been a surprise, says Lou. “You imagine that if you were dying you’d be looked after, but you end up looking after everyone else. I don’t want to put my children and my husband through this – it’s the last thing I want to do. So I work hard at keeping things as normal as possible for them.”

It wasn’t always this way. When she was given her prognosis, Lou went home and went to bed. “I stayed under my duvet for weeks. I took the medications they gave me and I could feel myself slipping away. I was a bit of a zombie – the drugs really affected me. Then, one day, I thought I’d do it my way: get out of bed again, take the minimal amount of medicine and live for the day. Since then I’ve done really well. I don’t get up thinking, I’m dying; I get up thinking, what do I need to do today?” Suddenly, she feels she’s too busy to die. “I’ve got lovely children, a big garden to look after, the washing to get through and the girls’ bedroom to finish decorating.”

For Andy, getting this positive message across is one of the reasons he agreed to be part of the TV project. “Some people who get told they’re terminal simply give up, but you really don’t have to do that. You can change your life, focus on what matters, adapt to the new circumstances. Things are never going to be the same, but it’s not over till it’s over. I don’t think of myself as dying: I know the disease I’ve got is going to kill me, but I don’t know how long it’s going to take to do that.”

His biggest fear is leaving Annette, and especially Isobel, behind. He worries about his three older children too, but they are in their late teens and early 20s, and have their own lives. Isobel shares his life on a daily basis. “We can’t go out together as often as I’d like, but we have lots of hugs. What terrifies me though is thinking of the day when she says, ‘I want my daddy’ and I’m not here.” He worries, too, about how growing up with a seriously ill father for the past four years will affect her future. “It’s made her childhood very different. At the age of two her favourite toy was a chemotherapy box complete with pretend-drugs and syringes and a little pair of gloves. You can’t help thinking, what will all this mean for her when she’s older?”

Annette was also included in some of the weekends filmed for the documentary; for her, as for Andy and Lou, the chance to get to know others in a similar situation has been invaluable. “It’s lonely for partners, just as it’s lonely for the people with the illness,” she says. “Friends do fall off … people are frightened. They don’t know what to say to you. People are there [at the start] and they’re there at the end, but in the middle you’re on your own.”

What Andy, Annette and Lou hope is that the documentary will help to demystify the process of being terminally ill, while also making the obvious point that it’s important to appreciate what you’ve got because you won’t have it for ever. “When I hear people moaning about something in their life not being right, I think, I’ll swap your worries for mine,” says Andy. “In many ways my life is like being in a bubble.”

It’s a bubble where what matters is razor-sharp, and where it’s incredibly easy to let go of the unimportant stuff; a bubble we might all want to inhabit in different circumstances and a situation we can all certainly learn from.

• My Last Summer starts on Channel 4 on 4 June at 10pm

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