Just months to live at 28

The day before he turned 28, Simon Toomey learned that cancer was rampant in his body and it was likely he wouldn't live to see another birthday. He's sharing his thoughts on his death in an online diary, and he spoke to BECK ELEVEN.

When Simon Toomey was told he might have as little as six months to live, he was a mess.

Understandably there were tears. He cried himself to sleep every night for a week, and then he dusted himself off and got on with living.

That was two months ago.

The timeline of Toomey's cancer progression can be laid out as briefly as his life expectancy.

A malignant melanoma was removed from his groin in March, in London. Doctors told him that the lump was removed cleanly and the operation was successful.

He was expected to visit his oncologist three months later for a routine follow-up, but before the three months were up, Toomey discovered another lump in his shoulder.

The worst he expected from this second lump was another operation and perhaps a course of chemotherapy.

Instead, on June 17, one day before he turned 28, the former St Bede's student was told by an oncologist that he could not realistically hope to see 29.

"I asked her if she was telling me it was terminal," he says.

"She said 'yes' so I asked how long I had. The answer was six to 12 months."

Rather than ring his parents in Christchurch in the middle of the night, Toomey stewed until the time difference between the two countries was acceptable.

His mother picked up the phone and he told her he had cancer in his shoulder, neck, back, lungs and liver. She hung up in shock and tears, but even then he hadn't revealed the worst of it.

At the time of his diagnosis, Toomey, who has a degree in accounting from Canterbury University, was living the grand life in London.

He worked with a young crowd in finance and marketing at a media company, earning as much by lunchtime on a Monday as he gets from a week on the benefit he now receives.

He was sharing a spacious house in Chiswick with seven great mates, making decent use of the barbecue area and hitting concerts and music festivals both in England and Europe.

If cancer hadn't booked the flight home for him, Toomey envisages his return would have been a few years off.

His last weekend trip was a "boys' weekend" to Krakow, in Poland, for sightseeing during the day and a ticking off by Polish cops after an evening's drinking. It was a typical OE except for the cancer bit.

Advanced metastatic melanoma works fast. Two months after diagnosis, he is considered stage four, the worst. Now he lives with his mum and dad in their St Martins home, with grim prospects.

Despite the aggressive cancer throughout his system, Toomey looks chipper sitting at the family dining table, sounding a bit lethargic, like a guy missing a few hours sleep.

In front of him is a cup of tea poured by shaky hands and a pill box housing clusters of neon tablets.

He takes 15 pills a day to combat nausea, inflammation, constipation and depression; steroids stop blood clots in his lungs, and he injects himself with blood thinners daily, in combination with three-weekly chemotherapy treatments.

He also has a healthy dose of hope.

"I have to prepare myself for the worst, and as long as I can do that, it's fine to hope for the best."

That hope rests in the possibility of taking part in a drug trial in Australia, because even if that doesn't work for him it may help someone else in the future.

"I also figure I can hope for spontaneous regression, but this is so rare and unlikely that I haven't even discussed it with my oncologist.

"A mate sent me a message that said: 'As random and nonsensical as these situations are, surely the same must apply to their departure'. I like that. Why couldn't that be me?"

For a handful of reasons, including "something to do", Toomey decided to document his "miraculous recovery or premature death" in an online diary in which his style of writing is as matter-of-fact as its name "cancerblog".

He was going to call it "Simon has cancer", but cancerblog was as good a name as any.

The title should be an indication of the frankness with which Toomey discusses questions of faith, the topics that run through his mind moments before sleep, the effect of treatment and random pains resulting in hospitalisation. He takes questions from his readers and answers them with rare honesty.

"I just thought I was in an unusual position to let people get an insight into the mind of someone in a situation that's so I don't know so nasty and so far removed from what any other 28-year-old in a Western country is going through.

"And to get a few things straight in my head. I wrote for a month before I shared the link with anyone."

Some days he writes with humour. The July 15 entry reads:

"Sometimes I feel like a failure. It shouldn't be that hard to live for 60-80 years; loads of people do it all the time without even trying. Keith Richards has done it despite actively trying to kill himself for 40 years."

Other days, it is difficult to dredge up a laugh.

Before sleep falls, he wonders about his two younger sisters.

"They've got another 50 or 60 years ahead of them. People will ask if they've got brothers or sisters. How will they respond? Do they say they've got one sister or do they say they've got a sister and a brother? I don't know."

The only time his voice shakes and tears well is when he speaks about his family and what they might go through after he is dead. He says it is unfair that his mother, father and three of his grandparents will be at his funeral.

However, it is talk of funeral plans that stops his voice from trembling, the tears from spilling. He is gathering thoughts on who will eulogise, who will carry his coffin and what music will be played.

"In a weird way, thinking about the funeral cheers me up. It'll be huge, they'll be scalping tickets I'm hoping."

Solid plans will not be written until Toomey is sicker but there will be some U2 played, he says.

He wonders how sick he will get towards the end and what death might be like, because, though it is certain for everyone, it is still the great unknown.

"No-one can tell you what that's going to be like. It's a very, very private, lonely journey and I can only pray and hope that it's pain-free and not too uncomfortable.

"Melanoma and cancer are very real, they don't always affect the very old or the very young and they're not always self-inflicted (Toomey was never a sun-seeker) and when they get away from you they can be very, very nasty.

"But for all that, they can still be treatable if they're caught early. So for God's sake, if you notice something, get it looked at."

The threat of imminent death has reorganised Toomey's priorities.

Before cancer, Toomey's list of things to do before he died would have been to climb Mount Sinai or drive across America. Now his list is less tangible, focusing on human interaction.

He wants to hear his niece say his name (she is six months old), he wants to be part of friends' weddings next year and show off the South Island to mates from overseas. If he makes it back to London, he dreams of taking his cousin to a premiership football game.

"I think the human mind is pretty good at adjusting its priorities to its circumstances.

"People often ask me how I've been able to stay so collected and together, but I honestly think that most people would find themselves in the same mindset once they'd gotten over the initial shock.

"I cried myself to sleep for probably a week, but at some point after that I just decided that I had to start thinking more constructively about my situation. That was when I started writing and researching, and thinking more and more about what's really important.

"That's also when I realised that I couldn't take anything for granted any more, which is why the things on my new priorities list are going to be that much more special when they do come around."

- © Fairfax NZ News