The Unbearable Agony Of Being

MOST of the time, it seemed that Dr Miklos Somogyi, retired mechanical engineer, didn’t really need a body. He was happy enough to have a brain for thinking his complicated thoughts, and his fingers to do the typing.

There was dining out at a local Italian restaurant or going to the movies with his wife, Erika, and for half an hour in the evening the world stopped still with the television news. But most of the action in Miklos Somogyi’s life took place in his sunlit study. ‘‘About 70 per cent of the time, that’s where he is,’’ says Erika.

For the past five years Somogyi has been working on a computer program that presents complicated mechanical components in 3D. The software is mostly complete. He needs another year to write the documentation so other engineers can make use of his baby.

‘‘And then, you know, I have another project. I have enough to do that would take me three lifetimes,’’ he says with the glee of a child with so many model aeroplanes to put together.

Miklos Somogyi may not have the extra year he needs. There may be only six months left to him, or a couple of years. ‘‘It’s all so vague. No straight answers to my straight questions,’’ he says.

In July 2007, Somogyi woke up with intense back pain. Six weeks later, after a variety of scans and blood tests, he was diagnosed with prostate cancer, and with a secondary tumour that showed up as a tiny dot on the spine in a full-body bone scan.

A locum urologist gave him the worst news in a roundabout way. ‘‘He said it would respond well to palliative care,’’ he says. ‘‘He asked if we knew what palliative care was — he didn’t have to explain it to me.’’

Somogyi’s regular urologist mentioned ‘‘something about three years. Whether that was a painless existence or my life expectancy, it wasn’t clear at all.’’

A biopsy confirmed the diagnosis, and Somogyi was put on medication to help him cope. ‘‘The pain was gone, but at a huge price: I became a zombie. No energy whatsoever. My wife had to put on the leash to take me for a 100-metre walk.’’

And yet, for 10 minutes a day, Somogyi managed to crawl to the computer and work on his project. He also continued his long-time habit of writing letters to the newspapers.

‘‘He’s always written things down,’’ says Erika. ‘‘He likes to document everything. It’s what makes him happy. And this has been an extraordinary experience. It was more for him that he wrote it all down, and perhaps maybe for other people to know what is going on and what it is like.’’

About two months ago, writing in a haze of pain and rage from his hospital bed, unsure whether or not he’d walk again, Somogyi sent his 7000-word account to The Sunday Age. It presents a very raw portrait of a man coming to terms not only with death but with the madness of physical agony, the ‘‘panic and resentment that can pull families apart’’ when faced with the complexities of serious illness, the month-long despair of mistakenly believing himself to be a paraplegic with no light at the end of the tunnel, the horror of ‘‘becoming a vegetable’’, and the absurdity of a hospital system so large and impersonal that ‘‘you feel like you are being processed in a factory’’.

This was Somogyi’s rugged introduction to palliative care, where he found ‘‘a life that is no life’’.

‘‘And I know I will most likely go through it again. The cancer will come back and the next time there won’t be any coming home to Erika. It will be a nursing home — unless I do something horrible.’’

Like what? ‘‘Throwing myself in front of a car. A train. Plenty of people do it,’’ he says.

This was Miklos Somogyi speaking to me at his home, where for the past month he has been finding new ways to define a good life: the hard-work joy of shuffling around on a walking frame; toileting with privacy; traversing the 20 steps up to his East Toorak flat by gripping the handrail like a rope on a mountain face. Recently he managed 15 metres walking on his own, with his wife in front of him, ready to catch him with the walker. These people are in their early 70s, and their life together has taken on the highs and lows of dangerous adventure.

The first 18 months of Somogyi’s illness were spent at home, heavily sedated, keeping his project alive in dribs and drabs. It was in the new year when, as Somogyi writes, the pain returned.

‘‘I received five radiation treatments at The Alfred. In a few days the pain was gone and I was a perfect zombie again, sleeping 12 hours or more, doing nothing useful. But the complex regime of medication had many other side effects. Hot flushes with lots of sweating. I was itching with rashes. I was losing my hair. I lost the sense of taste. My speech was hoarse and too loud because I couldn’t hear myself because my hearing was affected.’’

After three weeks of this, there was a temporary miracle. An anti-inflammatory medication had the effect of an amphetamine on Somogyi’s system, and he found himself sprinting around the apartment. ‘‘Usually I woke up at 11 or so, and slept a lot in the afternoon. Now I found myself in the study at 7am … I accomplished more in a few hours than what the zombie did in weeks. Have you ever seen a 72-year-old hyperactive kid? I got my life back.’’

The manic revival lasted a week, and the comedown was brutal: an invasion of pain that reduced him to a panicked and demented raging. ‘‘Our doctor sent us to the emergency [department] of The Alfred. First we went home to collect a few things in haste. In agony I was shouting about the smallest things that Erika, understandably, took in a bad way. I was saying a lot of things that were completely out of character. We have been married more than 20 years, and never a loud argument, just love, even when we disagreed.’’

On the drive to the hospital, every change of gear, every step on the brake brought another hell-soaked scream. ‘‘We arrived to The Alfred and I was beside myself. I remember Erika complaining that I was aggressive, and a male voice kept asking me questions that I did not understand.

I remember shouting that I was in pain. In the haze I did not notice that Erika was in deep panic, that she was trembling all the time. I brought up old things that made her scream. Thank God that the damage I caused was overridden by love but it took weeks before the trembling ended. An episode like this might have torn apart a weaker family.’’

Somogyi was admitted to The Alfred at the end of January. When he later tried to document his first weeks, he couldn’t decide whether various episodes ‘‘were real or just my imagination’’.

It is necessary to point out here that Somogyi wasn’t experiencing actual palliative care, beyond the numbing drugs. In a hospice, the nursing has an inherent pastoral component as well a practical one. Palliative care is a specialist field where there is a strong awareness that a ‘‘difficult patient’’ is more often than not a patient in physical and emotional distress. At The Alfred, Somogyi was just one of many people who needed to be made well enough to send elsewhere. Too often it seemed that the hospital workers regarded him as a difficult patient, with no understanding of his fragility.

He writes: ‘‘It was necessary to have some CAT and MRI tests. A few young guys wheeled patients down to the basement to the machinery. They ran on the corridors, used the brakes, accelerated like a Schumacher, and were perplexed that I was shouting: a finicky customer. They weren’t told about spinal cord damage and related pain. From now on I was full of fear, and they were full of resentment when I complained, and then handled me without the slightest regard for my condition.

‘‘During another MRI scan I was wrestling with someone and heard a female voice: ‘He hit me.’ Whether it was haze or real, I’ll never know. Anyway, if a patient causes some trouble, then his reputation will follow him/her quite a way up.’’