The Quality of Mercy: One Brave Couple's Struggle for a Dignified Death

Quality of Mercy16/3/04 3/23/04 5:58 PM Page i Ross Anderson spent over thirty years in the Australian motor car ind...

Author: Ross Anderson

7 downloads 295 Views 1MB Size Report

This content was uploaded by our users and we assume good faith they have the permission to share this book. If you own the copyright to this book and it is wrongfully on our website, we offer a simple DMCA procedure to remove your content from our site. Start by pressing the button below!
Report copyright / DMCA form

DOWNLOAD PDF

Quality of Mercy16/3/04

3/23/04

5:58 PM

Page i

Ross Anderson spent over thirty years in the Australian motor car industry. His book, Car Hunting, was first published in 1992. He currently lives in northern New South Wales.


3/23/04

5:58 PM

Page ii


3/23/04

5:58 PM

Page iii

THE Q U ALITY OF

MERCY Ross Anderson

A Sue Hines Book ALLEN & UNWIN


3/23/04

5:58 PM

Page iv

First published in 2004 Copyright © Ross Anderson 2004 All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system, without prior permission in writing from the publisher. The Australian Copyright Act 1968 (the Act) allows a maximum of one chapter or 10% of this book, whichever is the greater, to be photocopied by any educational institution for its educational purposes provided that the educational institution (or body that administers it) has given a remuneration notice to Copyright Agency Limited (CAL) under the Act. A Sue Hines Book Allen & Unwin 83 Alexander Street Crows Nest NSW 2065 Australia Phone: (61 2) 8425 0100 Fax: (61 2) 9906 2218 Email: [email protected] Web: www.allenandunwin.com National Library of Australia Cataloguing-in-Publication entry: Anderson, Ross (John Ross), 1949–. The quality of mercy. ISBN 1 74114 151 6. 1. Euthanasia. 2. Euthanasia – Moral and ethical aspects. 3. Assisted suicide. I. Title. 179.7 Cover design by Phil Campbell Text design and typesetting by Pauline Haas Printed by McPhersons Print Group The lyrics of ‘She Says to Me’ on page 92 are reproduced with the kind permission of Graeham Goble. Justice Coldrey’s comments on page 119 appeared in the Herald Sun, 25 July 2003, page 5. All photographs are from the author’s private collection. 10–8–6–4–2–1–3–5–7–9


3/23/04

5:58 PM

Page v

or you Irene The last part of my promise


3/23/04

5:58 PM

Page vi

Irene holding Regan as a baby, 1980


3/23/04

5:58 PM

Page vii

ontents

On stand by—1 The first signs —5 A partner for life—11 Considering the options—18 Taking control—27 Beating the odds—43 The business of living—52 Doing it hard—71 She says to me—87 One thousand and seventy-one days—95 The last promise—108

Acknowledgements—122


3/23/04

5:58 PM

Page viii


3/23/04

5:58 PM

Page 1

hapter One O N S TA N D BY

M

y life changed forever in July 1999 when my wife and soul mate of 24 years received the death penalty. Not at the hands of a judge as retribution for some heinous crime – after exploratory surgery, she was diagnosed as having terminal, inoperable, incurable pancreatic carcinoma: cancer of the pancreas. I am writing this to fulfil the last promise I made to Irene. I vowed that I would find a public forum for our case so that others could draw strength from her courage, and perhaps not feel so alone if they found themselves in our situation. Despite the demons I have faced and the tears and pain I will suffer as a result of what has been and what might yet come, I am hopeful that reliving these experiences will be worthwhile. It is my wish that our management of Irene’s cancer – our lifestyle changes, including diet, exercise and mental


2

3/23/04

5:58 PM

Page 2

T H E Q U A L I T Y OF M E R C Y

conditioning – coupled with her tenacious hold on life at all levels will inspire others to take control. Not to simply accept a prognosis and concede defeat. Irene and I proved that there is another way, and that you don’t have to live according to the time frames dictated by the medical experts.

From day one, I knew I couldn’t sit back and watch my wife suffer an undignified death – unless, of course, it had been Irene’s wish for me to do so. Our final journey – a journey that would take one thousand and seventy-one days – began in the lift on the way down from visiting the surgeon. We had nervously agreed to invasive surgery as the best course of action. We hoped – no, we believed – that the operation would be successful and that Irene would make a full recovery from pancreatic cancer. Before the lift reached the ground floor, Irene let me know her thoughts on the quality of life. If it ever gets to the stage where I shit the bed or you have to wipe my arse, I don’t want to be here. There and then she asked me to promise to honour her wishes, which I did willingly. I told her I would never let her live a life without quality and dignity if I could help it.

As you read this, I need you to understand that the mere contemplation of taking a life, even though it would be an act


3/23/04

5:58 PM

Page 3

O N S TA N D BY

3

based purely on love, was the most difficult thing I have ever had to face. Although my dear Irene made me acknowledge and validate that promise again and again over three years, and other family members and friends were aware of our decision, the arguments I had with myself were by far the most painful. I had many torturous and sleepless nights after which I would often not eat for days, caring only for Irene’s wellbeing. The fear of whether or not I could actually assist her to die with dignity clashed with the impending reality of the act. The unknown time frame didn’t help matters. Of course the assistance was premeditated, well-planned and researched, none of which made it any easier. I prayed continually that I would never have to do it but I had to be prepared that there could come a time when my resolve would be called on. I had no way of knowing that that time would be nearly three years after the failed operation. Three years of uncertainty, three years of selfdoubt. Would I be consumed with guilt if did it? Would I suffer the same fate some day if I chose to ignore her pleas? Could I watch her suffer? Would I have the strength to actually carry out her wishes when the time came? I resolved to defer that question and its obvious complexities until it was asked. That resolution did little to calm my regular haunting doubts. Some of you will see me as a calculated killer, particularly those of you who believe in the sanctity of life above all. It is possible that is the way the law will see it, too, and I am ready to bear those consequences. It is true that my act was premeditated, but only inasmuch as I could determine the


4

3/23/04

5:58 PM

Page 4


most humane way to terminate Irene’s misery and suffering. You may even consider my evaluation of the options as cold and clinical. I tell it that way so that the weight of my emotions doesn’t interfere with the facts. If my decisions and actions offend any reader, then so be it. I still suffer from the traumatic emotional aftermath of these experiences, and grieve for the loss of my dear wife, but I have no feelings of moral delinquency, contrition or guilt. I do not feel as though I have committed a crime.


3/23/04

5:58 PM

Page 5

hapter Two THE FIRST SIGNS

I

t was late May 1999. After work, I visited my special place for my nightly 30-minute meditation. It was a beautiful evening. I then headed for the local supermarket to do some shopping, and arrived home just before nine. This was pretty much the normal Monday to Friday routine. The house was in darkness when I entered; the radio was on but there was a strange silence. As I placed the groceries on the table I noticed a small still figure standing hunched over the kitchen sink. It was my usually vibrant wife. Irene had been suffering from what she thought was a minor stomach upset for some days, with symptoms like heartburn or indigestion. She was obviously experiencing quite a lot of discomfort so I put my arms around her from behind and asked gently, ‘Are you all right, Irene? Still getting that acid feeling? Is it getting worse?’


6

3/23/04

5:58 PM

Page 6


I could feel her tense up as her whole body winced in pain. She clasped my arm but didn’t answer. I turned on the light over the sink. ‘What’s the matter, what’s wrong?’ I pleaded. ‘Talk to me . . .’ I held her for what seemed an eternity. I felt her body relax slightly as the immediate pain subsided and she turned to face me. Before she could speak I realised that this was no ordinary indigestion – her face was ashen and the whites of her eyes had a pale tinge of yellow. ‘I think you should see a doctor,’ I suggested. ‘I’ll be okay, it’s nothing really. I’m just tired and I didn’t get much sleep the last couple of nights,’ she answered. I knew from the tone of her voice that she was more than just uncomfortable. As I prepared a snack and ate I noticed she was scratching her lower arms. She dismissed it with her usual bravado, telling me I worried too much. ‘I’m a bit worn out myself,’ I said, as I helped her to the bedroom. ‘Let’s have an early night.’ As I prepared for a shower I told her that I’d be home early the next day and that if she wasn’t any better I’d take her to the doctor. I didn’t like that yellow in her eyes. She nodded in agreement. Still, there was no great cause for concern, I thought, remembering a friend whose eyes had had the same appearance after contracting one of the less dangerous forms of hepatitis, probably from eating contaminated food at a local market. The condition hadn’t been life threatening and was cured with simple medication. I reminded Irene of this,


3/23/04

5:58 PM

Page 7

THE FIRST SIGNS

7

downplaying any concerns she was having. We watched television in bed for a while then slept as comfortably as possible in the belief that everything would be fine. During the course of the following day we had many telephone conversations. Irene was still feeling very nauseous and she told me her skin was becoming more obviously yellow and was extremely itchy. ‘It’s nearly 6 pm,’ I said. ‘I’m coming straight home – should be there around seven. Try and be ready,’ I said, reminding her of the visit to the doctor. ‘And have a shower – that might help with the itch,’ I suggested. ‘Tried that,’ she shot back. ‘There is only relief when the water is running, and how long can I stand under a hot shower?’ ‘If you don’t have it too hot it takes a while for the hot water to run out. And it doesn’t take too long to reheat – if it helps, just do it. I’ll be home about seven,’ I reminded her. When I walked through the front door I had to disguise my shock and put on a brave face. She looked terrible! Her skin was pale yellow as she had said, but her eyes – they were what worried me. The whites were the colour of undernourished egg yolks, her pupils like deep recesses. She greeted me with the usual hug but I sensed her fear: she squeezed just a little harder and longer than normal. I wrapped my arms around her. We remained motionless and quiet, as one in our embrace with no need for words. ‘Shit,’ I spluttered, ‘Look at the time!’ Thirty minutes had just disappeared. ‘Come on! Grab your things and let’s go . . . right now.’


8

3/23/04

5:58 PM

Page 8


I ushered Irene through the front door, locked it behind me and scurried to the front passenger door of the car to open it for her. Little things like that had always pleased her. Further down the track, I would make a conscious decision to prove that chivalry wasn’t yet dead. It was one way of proving to her that no matter what happened, she would always be a true lady. I had decided to try a new medical clinic because it was closer to home and was open until 9 pm every day. We entered and after seating Irene I went to the counter to register. Being first-time patients, I could not request a particular doctor, so I filled out the necessary documentation then returned to sit with her. ‘We’ve got the next available doctor,’ I said casually as I reached for a two-year-old edition of a popular magazine. ‘We’ve got up to a 40-minute wait.’ To this day, every time I see that doctor I quietly thank God that he was the ‘next available’. The relationship we developed over the next three years – one that still continues today – puts him in my ‘very special person’ category. So gentle, understanding and compassionate. Even though he was obviously concerned throughout Irene’s illness, he never once gave any forecasts of doom, gloom or disaster. He prescribed an antihistamine to ease the itch, medication to counter the nausea and stomach discomfort and a mild sedative to help Irene sleep. A trip to a pathology clinic was arranged for the next day where a broad spectrum blood test was to be performed. We were to return to discuss the results


3/23/04

5:58 PM

Page 9

THE FIRST SIGNS

9

in two days time. We left comforted by the thought that Irene’s illness may well be a simple liver or gall bladder disorder, treatable with medication. While the doctor openly pondered other more sinister causes of Irene’s discomfort, we all regarded them as remote possibilities, choosing to adopt a positive outlook.


3/23/04

5:58 PM

Page 10

Ross and Irene’s wedding, 1980


3/23/04

5:58 PM

Page 11

hapter Three A PA RT N E R F O R L I F E

Y

ou need to know something of my life and the years I spent with Irene in order to understand how and why we made certain decisions. Throughout our relationship, our closeness developed as a result of overcoming adversity, not the least of which was our final challenge of finding a way for Irene to live, and then die, with cancer.

By 1973 I had become, by most standards, somewhat of a failure. I had married my first true love at twenty-two, in 1971. She was a wonderful woman: sensitive, caring and totally devoted to me. Her beauty beamed like a ray of sunshine and she wore her smile like a badge of distinction. Many people had expressed concern over her choice of partner; she was ‘too good for me’, they had said. As it turned


12

3/23/04

5:58 PM

Page 12


out, they were probably right – I was too self-centred and immature to realise how fortunate I was. In 1972, we had a son. As a young man working in the car industry, I was keen to gain the acceptance and respect of my peers. During working hours I needed to exhibit the maturity and habits of a 30 year old when, in reality, I had the emotional maturity of an eighteen-year-old boy. I became an expert drinker, able to hold my own with the best of them, in order to impress my much older workmates. With the drinking came infidelities – regarded by many as achievements – and I established a reputation as a hardworking, big-earning, big-spending man about town. In 1971, I earned in excess of $26 000 after tax. It was a small fortune. I changed jobs in 1973 and I thought I had it all. Employed in a high-profile role with a Ford dealer, I was the valuer, buyer and wholesale manager – a position usually held by people very much my senior. My income had risen to a point where I would often joke that I would have to stay awake 23 hours a day in order to spend it. Imagine a twenty four year old taking home on average $600 a week in 1973! Many people don’t earn that now. My ego rose along with my profile. With the new job came new workmates, and I developed what soon became a sexual relationship with a senior office worker. She was much more uninhibited than my wife and far more experienced than me. She accompanied me on my drinking bouts, something my wife could not have done


3/23/04

5:58 PM

Page 13

A PA RT N E R F OR L I F E

13

even if she had wanted to, given that she had the responsibilities of motherhood. I lived the life of a free agent. Passionate motel encounters soon became regular visits to my lover’s home and before long I was a stranger to my family. I wouldn’t see them for days. My penis had taken control of my life and led me to abandon my wife and son. I first met Irene in 1973. I was still with my wife and I had just begun the affair with my co-worker. I walked into a hotel I frequented at the time and, while chatting to friends with my back to the bar, I heard the words, ‘Can I help you? Would you like anything?’ I turned to find one of the most beautiful women I had ever seen in my life. As I looked into her eyes I sensed an instant empathy. She smiled as I approached the bar. She was just five foot tall, a miniature Miss World in my eyes, a glamorous little woman with personality plus, full of life and outwardly happy. I spent many a night in that bar if I didn’t want to go home or if I wasn’t going out with my new companion. I would stay until closing time and often after hours. After the masses had left, Irene and I would talk in what quickly developed into an easy, friendly manner. I learnt that she was also experiencing serious problems with her marriage. She would sit with me during her breaks. We went for coffee after she finished work, had a few meals on her nights off and even lunch one day when she had a late start. We were two lost souls lamenting the woes and difficulties of life. My affair was never mentioned. She seemed to be starved of


14

3/23/04

5:58 PM

Page 14


companionship but she had a problem with trust and refused to let me get close to her. From her perspective, knowing I was married with a child precluded any possibility of a deeper relationship and, beyond genuine friendship with her, I had no further expectations. I can honestly say I had no hidden agenda. Our meetings always ended with an affectionate, not passionate, goodbye kiss. Irene was content with her temporary celibacy and my needs were being addressed elsewhere. She maintained her independence. I didn’t even know where she lived. Irene confided in me one day that she had only married her husband because he bore a striking resemblance to her father. Their relationship was based on her need to gain affection and approval from her father while simultaneously wanting to punish him for his blatant lack of care and concern for her during her childhood. He neglected her, and her sister and mother, showing a level of disinterest that bordered on emotional torture. Irene was four when her family migrated from Germany in 1953 at the height of Australia’s post-war emigration boom. She spent many of her early years in migrant hostels and suffered the humiliation of that for many years at school. When her father became aware of the level of government support and the employment opportunities here, he developed an elitist attitude and departed from the family scene very early in her life. For much of Irene’s formative


3/23/04

5:58 PM

Page 15


15

years, she lived with the guilt that she was the only reason that her parents had married. Her mother had become pregnant out of wedlock and Irene was told often, and in no uncertain terms, that if it wasn’t for her, her parents would never have married and come to this country. Her father regularly lamented the fact that, if it wasn’t for her, he would be still enjoying a single life with no responsibilities in Europe. I went to the hotel one Monday night to see Irene, only to find she had been there earlier that day to collect her wages and resign. She left a message for me: ‘I’m sorry!’ I was devastated and felt hurt – I relished our friendship and I had no way of contacting her. I thought I would have to try to forget her because I would probably never see her again. I turned more towards my co-worker and fully capitulated to temptation. I was a coward. Rather than face my ever-increasing guilt I ran away to the country with my new partner, planning to start all over again. I deserted my wife, a woman whose only fault was that she loved me, and my son who I barely knew. She was forced to fend for herself without any support from me. Despite my behaviour, we have always had a very strong emotional bond and to this day she still doesn’t hate me. Dreams don’t last forever, and a successful long-term relationship must be based on more than mere lust. I soon returned to Melbourne, disenchanted with life. I was alone, with very few friends, feeling too guilty to attempt a reconciliation with my wife and son. I was ostracised by my father. My mother was more understanding


16

3/23/04

5:58 PM

Page 16


and provided a welcome shoulder to weep on, she helped me realise that if I could not go back I must go forward. I wallowed in self-pity for quite a while, finding consolation in solitary drinking bouts. Eventually I began socialising in the western suburbs of Melbourne with a small group of former friends. I gained employment at the local Ford dealership as a result of who I knew rather than what I knew. My destiny seemed to be the car industry. I rented a small sparsely furnished flat. I led a fairly pointless life of work and alcoholic excess for months. One morning in May 1975, I can’t remember why, I strolled to the boundaries of the used car yard. Wandering aimlessly amongst the cars I reached the footpath and looked up where, to my complete surprise, stood Irene! Nearly two years had passed but she hadn’t changed at all and as our eyes met our empathy immediately returned. Why did she turn left instead of right? Why was I at that spot at that time? At that moment I didn’t question fate: I had failed my first wife, abandoned my son, become entangled in a relationship destined for collapse, I had a few casual liaisons and had begun to seriously doubt that I would find another woman with whom I could share my life. But suddenly Irene was back and at that moment I decided she would not get away again. She was still living with her husband somewhat against his wishes. He felt honour bound to accommodate her even though he strongly objected to her insistence on a purely platonic relationship. A short after our meeting at the car yard,


3/23/04

5:58 PM

Page 17


17

she was working at my local hotel around the corner. Then I changed jobs to manage a used car yard across the road from her and we were very soon inseparable. For years we worked no more than 500 metres apart so we were virtually never out of each other’s sight, yet it never became a claustrophobic relationship. We ate together three times a day, socialised every night, but still managed to maintain our independence. Unlike so many of our friends and acquaintances, we could be together at opposite ends of a room. We were never clingy. We would arrive together, leave together and in the interim we simply enjoyed ourselves. A nod, a smile or a wave was enough to recognise our togetherness. On 18 September 1975 we moved into a comfortable rented unit and began our life together. The day before, I had collected the last of her personal belongings from her husband’s flat and he had accepted her departure with minimal animosity. In time he remarried and we became friends. Irene’s family approved of me without reservation – it was obvious to all that we were the perfect match. We lived like that for five years with no concern for the need for marriage. We worked long hours, lived well, bought our first house in the suburbs in 1978, had our daughter Regan in 1980 and had no doubts that we would spend the rest of our lives together.


3/23/04

5:58 PM

Page 18

hapter Four CONSIDERING THE OP T I O N S

I

rene had the blood tests. When we saw the doctor again on the Friday, we discovered that the tests had ruled out hepatitis and any other blood disorders. The results indicated an elevated level of bilirubin (the major bile pigment, orange in colour) in the blood which was causing the yellowing of the eyes and skin and creating the itch. The reason for the high level was not clear. The next step was a computer tomography (CT) scan which also proved inconclusive. Then an ultrasound showed a minor obstruction at the bile gland, but the result wasn’t definitive enough to indicate what treatment was required. This sequence of tests had taken the best part of a week during which Irene still had to cope with the symptoms, but, with increased medication, the itch had reduced and the


3/23/04

5:58 PM

Page 19

CONSIDERING THE OPT ION S

19

waves of nausea were less frequent. The yellowing had not reduced or worsened but she had very little appetite which was of the greatest concern for me. Our doctor decided that an ERCP (endoscopic retrograde cholangiopancreatography) test was necessary. This involved sending a thin catheter down through Irene’s mouth and digestive tract to the point of obstruction. A dye was then injected through the tube to give greater contrast and clarity for the X-ray. This would enable them to see and identify the cause of the obstruction. An appointment for the following week was made with a local specialist who would carry out this procedure. While waiting for this test, Irene’s discomfort increased dramatically. The itch became unbearable again and we tried various salt baths and lotions but they only provided temporary relief. The nausea had virtually killed Irene’s appetite. I forced her to drink broth and watery soups in an attempt to give her some nutrition and keep her hydrated, but shortly after she would bring most of it up. I came home one afternoon and as I entered the front door I could hear her crying – not quiet sobbing, but serious crying. She was in the ensuite, hunched over the vanity, and she hadn’t heard me coming. For a moment, before reaching out to her, I observed her wincing in pain. She looked up at me, straining between the bouts to acknowledge my presence – a vision that still haunts me. I felt her pain but there seemed to be nothing I could do. I held her, trying to console her, but nothing I said or did made any difference. It was horrible to


20

3/23/04

5:58 PM

Page 20


watch my wife in such pain and to feel so helpless. Then the penny dropped. We had to get her to hospital. Rather than arriving unannounced at emergency, I went straight to our doctor and explained the situation to him. He was most understanding and wrote a referral to the hospital. That was worth its weight in gold. That referral coupled with Irene’s physical appearance gained us priority access to the triage nurse who immediately realised the severity of the situation. Irene’s admission was a blessing in disguise. I didn’t know it then, but from that time on the public health system would completely take over. Sometimes, life can seem to be little more than a series of numbers. Social security number, bank account number, drivers licence number, telephone number . . . the anonymity of a number assigned as identification can cause no end of frustration. If you are seriously ill in Australia only two numbers will mean anything: your UR (the number you are given when you are admitted to a public hospital) and your CRN (customer reference number, given to you when you are approved to receive commonwealth entitlements). Maybe we were lucky, but for us, these two numbers were tickets to one of the best government-funded medical and social security systems in the world. After more than a week of inconclusive tests and with five more days to wait until the appointed ERCP, Irene was admitted to hospital. Because they didn’t have the originals, the doctors ordered repeats of all the tests done to date: X-ray, ultrasound


3/23/04

5:58 PM

Page 21


21

and a CT scan to be carried out the following morning. They also had equipment to do the ERCP if necessary.

The hospital’s ERCP showed a very small growth at the head of Irene’s pancreas. Malignant or benign – it wasn’t that clear. There wasn’t time for a biopsy; it would have to be dealt with surgically. There were two options. The first option was an operation to bypass the obstruction, a very minor procedure we were assured, that would remove the current symptoms – jaundice and itching – and they would deal with the actual cause when and if more serious problems arose. In other words, each additional symptom would be handled as required. This approach had some advantages. The size of the growth gave no indication of its age or stage of development. Should we be fortunate enough to find that it was not a very aggressive tumour, further symptoms could be many years away. But we would need to come to terms with the fact that current non-surgical treatments offered no cure; chemotherapy and radiation treatments were not given as options. The second option was a major operation to remove the growth while it was still small. Called a Whipple procedure, the operation would remove portions of the upper gastrointestinal tract, including the ‘head’ of the , the attached duodenum, a portion of the common bile duct, the , and possibly a portion of the stomach and some sections of the


22

3/23/04

5:58 PM

Page 22


colon. After the removal, all the ‘plumbing’ would be rejoined in such a way as to allow the remaining parts to function. The greatest benefit here was the possibility of removing the growth entirely, leaving Irene’s body cancer free. The downside – and there is always a downside – was that the sectional joins would be of principally non-like tissue. While there was no chance of genetic rejection (as found in transplants) the removal of organs would mean that the soft tissue would be stitched to stronger tissues and vice versa. This would require a long, slow rehabilitation with no strenuous activity at all. It could mean months in hospital, with more months at home wrapped in cotton wool and the distinct possibility of further surgery to repair torn joins. There would be major dietary changes to reduce stress on the new plumbing. The minimal research I was able to do at that time indicated that the Whipple procedure was the most viable option and had been performed many times with a fairly high success rate despite the long and debilitating recovery processes. In short, we had to choose between bandaid-style repair (with minimal recovery time and dealing with further symptoms only if necessary) and total removal of the growth (with an extended and possibly painful recovery period). The carrot of complete recovery was dangling before us. We were given time to deliberate. Irene was to be discharged that day and an appointment was made for one week later to further discuss our options with a surgeon. The symptoms had been reduced and stabilised and there was no advantage in staying in hospital.


3/23/04

5:58 PM

Page 23


23

Irene was immediately in favour of an attempt at removal. ‘Get rid of it,’ was her instinctive response. ‘I can’t get on with a life so full of uncertainty,’ she said as we packed to leave. ‘I’d rather get it out and beat it now.’ ‘Wait and see’ was not how she had lived her life to this point and she wasn’t about to start.

We sat uncomfortably in the surgeon’s waiting area, reasonably sure that complete recovery was the most likely outcome. Irene’s positive outlook left no room for any other consideration. We were eventually called in and introduced to an extremely affable and, by all reports, extremely competent surgeon. As part of the broadening and sharing of facilities between major metropolitan hospitals, this surgeon was being ‘borrowed’, along with some specialised equipment, from the most high-profile surgical centre in Melbourne. He had just returned from an overseas study tour focussing primarily on pancreatic disorders and his charter was to perform the first procedure of this kind at our hospital. He told us that state-of-the-art equipment and technology was being made available to ensure the greatest possible chance of success. The exploratory work had led the surgeon to believe there might be just one tiny lump, only millimetres in diameter. He explained the procedure in great detail, without minimising the complications and difficulties. His confidence rubbed off on us. Irene had more or less made her


24

3/23/04

5:58 PM

Page 24


decision before this meeting and nothing he told us now dissuaded her. ‘How soon before we can get into it?’ she wanted to know. ‘Is next Monday at 6 am soon enough for you?’ was his smiling reply. ‘That will give us ample time to gear up.’ As the surgical team would explain to me later, if they were going to give this a go, the sooner the better.

Before the lift reached the ground floor she said it. If it ever gets to the stage where I shit the bed or you have to wipe my arse, I don’t want to be here. I gave her my word without questioning. Not for a minute did I think I would ever have to take action. After all, Irene was going to make a full recovery.

On the way home we discussed all sorts of propositions and possibilities. We knew the risks, but the possible benefits of the operation seemed to outweigh them. I knew we could handle the long recovery together because our relationship had been tested before and we’d pulled through. This would be no exception. The possibility of actually removing the insidious growth so that it wouldn’t spread through the lymphatic system gave us real hope.


3/23/04

5:58 PM

Page 25


25

Once we were back home I made sure Irene had everything she needed for the day and headed into work to resign. My employer had indicated to me that, within reason, he would do his utmost to accommodate my situation and would endeavour to work around our needs. I really appreciated this offer but the operation the following Monday, followed by weeks of recuperation in hospital then months of home care – in all honesty, if I was to be part of Irene’s recovery then this was a commitment that could not be easily accommodated in a working week. I would become a burden, losing first the assistance, then the friendship and finally the respect of my colleagues. I resolved to leave on Friday. They accepted with one stipulation. ‘Go home now and spend some time with your wife. Don’t worry, we’ll pay you for the week, you won’t be much good to us here,’ they told me. ‘Call in next payday and we’ll work out exactly what we owe you.’ I accepted the offer with gratitude. Those extra few days at home were a gift. Irene refused to believe that it would take her six or seven months to recover, even making plans to visit relatives later that year. I gave up trying to influence her thought processes, preferring to let her set her own agenda. The way I saw it, she had amazed me so many times before, with her never-say-die attitude. Who was I to say she couldn’t do it again? For that whole week she continually surprised me, she was just so positive. She had to lift my spirits. You would have thought she was going away for a long


26

3/23/04

5:58 PM

Page 26


weekend the way she prepared her hospital suitcase, including books to read for enjoyment as well as books on cancer, diet, exercise and motivation. ‘How long do you think you’ll be in there?’ I asked. ‘I’ll be out as soon as I can,’ she answered. ‘Do you want Regan to come home?’ ‘No, why? Do you?’ she turned to me. ‘It’s far better if she stays in Ballarat and goes to uni. What can she do here? Unless you need her . . .’ I decided to leave things as they were. I felt we could manage on our own. The weekend was good. The medication to reduce the itchiness and the yellowing was working and, other than mentioning minor discomfort, Irene didn’t express any worries or concerns. We had an early night on Sunday setting two alarms, one for 3.45 am and the other for 4.00 am, just in case. Irene wanted to have a long hot bath before we set off for the hospital in the morning. I had trouble getting to sleep, but Irene was out like a light within minutes. Then she was up and in the bath before the alarms went off. She’d been more nervous and edgy about visits to the dentist! I dressed and loaded the suitcase into the car while she said goodbye to the cats and dogs, promising to be back as soon as possible. We left for the hospital at 5.20 am.


3/23/04

5:58 PM

Page 27

hapter Five TA K I N G C O N T R OL

A

hospital is an eerie place at 5.50 am on a Monday morning. You are conscious of every step, you almost feel you should tiptoe down the corridors. We bypassed admissions and headed straight for the designated surgical ward where we were greeted by the nursing team. They were prepared for our arrival and began organising things. Soon the surgeon and the anaesthetist joined us for an informal chat. Everyone was all smiles – no sad faces, doom or gloom here. ‘What have I been worrying about? Irene was right,’ I told myself and while they went to scrub up I had a last few minutes alone with her before she was taken in for the pre-op. ‘The sister is going to ring me as soon as you hit the recovery room,’ I told her. ‘That will give me plenty of time to get here before you are fully with it. Is there anything you have forgotten that you might need? And don’t worry, Darling, everything will work out the way it’s supposed to.’


28

3/23/04

5:58 PM

Page 28


She knew what I meant by that. Our fate was now in the hands of other and more powerful forces. ‘I’m more worried about you,’ she whispered. With full confidence in the surgical team, I gave her one last kiss and hug and left her in the capable hands of her nurses. Trying not to think too much about anything, I drove home. I would have plenty of time to contemplate all the possible outcomes when I got there because I didn’t expect to hear from the hospital until early afternoon. I tried to get some sleep. The telephone woke me. I glanced at the clock – it was only 11.35 am, ‘Who’s this?’ I wondered as I reached for the phone, half asleep. The surgeon’s voice snapped me into awareness. He came straight to the point. ‘We couldn’t remove the tumour. It’s only very small but it has infiltrated the portal vein of the liver. If we can’t get it all we don’t touch it, so we have bypassed the obstruction and just put her back together. There is nothing more we can do. I’m sorry . . .’ I was stunned. He waited in silence as I gathered my thoughts. ‘Nothing?’ I asked, ‘NOTHING?’ ‘Surgically, no.’ He sounded genuinely disappointed. ‘From a positive perspective she will not have the itching or yellowing any more and the recuperation from what we have done will not take long.’ ‘Exactly what did you do?’ I demanded. I needed to know.


3/23/04

5:58 PM

Page 29

TA K I N G C O N T R OL

29

‘We opened with the full procedure in mind’, he began. ‘We went through the muscle layers and clamped them apart until the pancreas was in full view. When we turned the organs to view the growth we realised that it has sent out fine ‘roots’ into the portal vein of the liver. This is not uncommon’, he continued, ‘the portal vein is the main blood vessel of the liver, and, like a weed, the tumour is looking for a nutrition source to feed its growth. I saw it and touched it but I couldn’t remove it.’ ‘How long do you think she’s got? I asked with my heart in my throat. ‘Does seeing the growth make that question any easier to answer?’ I was choking on my words. It was 8 July 1999. Did we have weeks, months, years? I held my breath waiting for his answer. ‘If she sees Christmas you will be lucky,’ he answered almost apologetically. ‘I can’t tell how aggressive it is but we have not disturbed it in any way so today’s work will not hasten its development.’ I was in shock. I didn’t know whether to shout in anger, scream or cry. I mouthed words but no sound came out. ‘Are you still there?’ he asked, dragging me back to reality. ‘Don’t tell her anything. I want to tell her in my own way.’ I begged him. ‘Please, please, don’t let anyone tell her she has only got till Christmas. Not you, not anyone.’ ‘She has the right to know,’ he answered in a slightly righteous tone. ‘It’s her life.’ ‘Look, I have heard about this before,’ I began to explain,


30

3/23/04

5:58 PM

Page 30


‘and I am of the opinion that when you give a person a time frame, they subconsciously set a mental alarm clock.’ I could almost hear him thinking as I continued. ‘If I told her Christmas and she died mid-December, would your educated guess have been right, or would her alarm have gone off? I would like you to promise me that all such information, now and in the future, will be filtered through me. Please?’ I pleaded with him to consider what I was saying. I may be wrong, but I sensed a certain reluctance as he acceded to my request. But he had agreed, and I had no option but to rely on him to keep his word. I thanked him with as much sincerity as I could muster. I was so disappointed and I’m sure it was obvious in my voice, but I didn’t doubt for a moment that, surgically, he’d done the right thing. The words I said to Irene just before I had left her that morning kept echoing through my consciousness. ‘Don’t worry, Darling, everything will work out the way it’s supposed to!’ In hindsight I believe that a greater power stepped in to prevent the removal of the tumour. If they had been able to remove it I am sure we would have had a short and painful time together and would have missed out on the joyful and life-changing experiences we shared over the years to come. I quickly dressed, combed my hair, grabbed a jacket and was about to leave when the phone rang again. I wasn’t going to answer it. I thought I was running late and now I really needed to be there when Irene came to. But it kept ringing and something inside me told me to pick up that phone. ‘Mr Anderson? It’s Doctor X from the hospital. I’m glad


3/23/04

5:58 PM

Page 31


31

I caught you before you left. There is no hurry, your wife won’t be in recovery for a while yet.’ ‘Why?’ I questioned him. ‘Is there something wrong? I just spoke to the surgeon . . .’ ‘It’s not a serious problem,’ he started to explain. ‘We were missing a swab from the operating theatre and an X-ray has shown that it is still inside your wife.’ He continued apologetically. ‘We have to wait a little while before we can re-sedate her so we can open her up and retrieve it. It is a simple procedure. We’ll remove a few sutures and go in through the original incision. We know exactly where it is, and then we will stitch her up again.’ I stopped myself before I lost it completely. No point attacking this poor bastard – he’d already drawn the short straw when he was given the job to ring me. ‘What time do you think I should get there?’ I asked him. ‘If you were here at around 2 pm I don’t think you would have to wait long. I’m sorry but please don’t worry.’ Don’t worry! Don’t worry! How could I not worry? My wife has pancreatic cancer. We make a difficult decision to operate to remove it. The head surgeon rings to tell me that the tumour can’t be removed and that she has five months to live if we’re lucky. Then someone else calls to tell me that they have to re-sedate her and open her up again to get a swab they left in her. Don’t worry! Don’t worry! I just wondered what else could go wrong. I felt lost. What was I going to do for another hour or so?


32

3/23/04

5:58 PM

Page 32


There was no point staying at home. I resolved that I would head for the hospital, take my time and deal with my anger on the way. No-one’s interests, least of all Irene’s, would be best served by me ranting and raving in the hospital. I should instead be happy that safety procedures had ensured that they’d noticed that the swab was missing and that they’d located it. When I arrived at about 1.45 pm it was hospital business as usual. Where there had been unearthly quiet at 6.00 am, there was mayhem now. Weaving my way through the crowded passages, I made it to the recovery ward only to find that Irene was not there yet. There had obviously been a change of staff. None of the nurses I had seen this morning were there so I introduced myself to the duty sister who knew all about the situation and behaved as if she was expecting me. She directed me to a waiting area, promising to call me as soon as Irene arrived. I sat down and picked up a newspaper that someone had left behind but before I even got to page two I heard my name mentioned. Looking up I saw the surgeon heading towards me nervously. As I shook his hand he began telling me about the swab. He was very apologetic and on the defensive, no doubt expecting anger from me. Fortunately I had processed all that on the way there. ‘Look, I understand that things aren’t always perfect,’ I said in an attempt to ease the tension. ‘You’ve got it out, and everything’s okay now – I hope.’ With that, he relaxed and began to explain what had happened.


3/23/04

5:58 PM

Page 33


33

After the patient leaves the theatre every item used is accounted for: instruments, swabs, everything is checked off against a pre-operation list. In Irene’s case, when a swab could not be accounted for, a portable X-ray was set up at her bedside. It didn’t detect the swab even though it has a fine metal strand woven into it. Another search of the theatre was carried out and the swab was still missing so Irene was taken to radiology for a full X-ray which located the swab behind her liver. ‘We cut three stitches, found it and replaced the sutures. Everything’s okay and she should be coming through soon,’ he said, indicating that she would be coming right past me on the way to the recovery ward. We discussed the details of the operation at length and he gave me a mental picture of his observations of the tumour with its hair-like roots shooting off into the liver. I was still comfortable with his decision not to touch or disturb the status quo. ‘Do you understand why I don’t want her to know your prognosis?’ I asked. ‘I haven’t decided what I’m going to tell her yet, but it won’t be anything like your story.’ Pre-empting his next question, I continued. ‘If she asks you, just tell her it’s a very difficult question to answer and that you and I have discussed it at length. Then I will intercede and tell her that I’ll explain it all to her later. I intend to inform all nursing staff of my decision and I would appreciate it if you would make a note somewhere on your file that no doctors are to discuss this issue with her either.’


34

3/23/04

5:58 PM

Page 34


His embarrassment over the swab may have helped my cause but whatever the reason he agreed. From that day forth his prognosis of Irene’s condition was never discussed again. While we were talking, Irene appeared on a trolley. I shook the surgeon’s hand, thanked him and followed the bed into the ward. The nurses found me a comfortable chair and I sat beside my wife, waiting for her to regain full consciousness. ‘Because of the second anaesthetic she’ll take a while to come around,’ the sister told me. ‘She might drift in and out of it for a while.’ I just sat. I waited, all the while trying to decide how I was going to put a positive spin on the failed attempt to remove the growth and then what I would I tell her instead of the five month time frame the surgeon had given me. She looked so peaceful asleep. Even under these circumstances, outwardly she looked so well. I refused to believe that she would be gone before Christmas. She was a shining example of the power of positive thinking. How could I instil in her a belief that it was possible to defy the odds and survive? Rather than set her alarm for death, I had to give her hope and if that meant blatant lies then that was all right by me. My thought processes were distracted by Irene’s stirring. I reached out and held her hand realising she would open her eyes very soon. Those eyes would question me before she could form words. I decided then and there to say whatever came to mind, knowing full well that I would have to remember every word. Whatever I said in the next minutes


3/23/04

5:58 PM

Page 35


35

and hours would form the basis of the deceptive script for the rest of her life, however long that would be. I was thankful at this time for all my early sales training. My time in the motor industry of the late sixties, seventies and eighties – where the end justified the means – had made me highly skilled in the art of deception. In the months and years ahead, those skills would be sorely tested, not only on Irene but on family and friends. To add credibility to my stories, I had to virtually believe my own lies. You may find this hard to believe, but as a car salesman I found deception quite easy, once I’d decided to approach my task as something I believed I had to do. I felt a slight squeeze on my hand. I looked at Irene. Her eyes were open and her lips formed a faint smile which said, ‘Hello, and thank you’. As her grip strengthened, her smile intensified, then her eyes closed again as she seemed to drift off, still holding my hand and smiling. She was okay and she knew I was there. It seemed like forever before she uttered a word. Then, with her gaze fixed firmly on me, she whispered, ‘How did it go? What did they do?’ ‘Good’, I answered confidently. First lie. ‘You take it easy now. I’ll tell you all about it when you’re fully awake and can understand properly. It’s all going to be okay.’ I lied again, with a smile. ‘Just rest now, and get your strength back. Can I get you a drink or anything?’ She shook her head. As she dozed off, I released my hold on her hand. Then a nurse appeared and began checking


36

3/23/04

5:58 PM

Page 36


her pulse and general condition before readying her bed, complete with all its monitors and drips, for a move to the general ward. I picked up her suitcase and followed. She was awake and the motion was making her more alert. We didn’t speak all the way. Her eyes were darting all over the place and while she didn’t appear to be in any pain, occasionally I sensed fear in her eyes. I met her gaze with a reassuring smile. I followed the trolley into the lift and down to the second floor where we ended up in a small room with one other patient, an elderly woman who was sleeping. I wondered if she had been sedated. The nurse plugged all the equipment in, pulled the curtain around the bed, gave me a chair and then left. We had as much privacy as the situation allowed. ‘Tell me,’ she asked, looking straight at me. ‘They couldn’t remove it, so they bypassed it and put you back together. After talking to the surgeon, it could be a blessing in disguise,’ I lied. ‘Why? How?’ she asked, obviously perplexed by my answer ‘Because they couldn’t remove the growth and just bypassed it, the recovery from the operation will be much quicker.’ My mind was working overtime. ‘They have put what they call a stent in, a small tube to go around the growth. That will eliminate the jaundice, the yellow colour, and stop the itching.’ ‘Why couldn’t they take it out?’ she asked, obviously confused. ‘Was it bigger than they thought?’ ‘No, the reverse actually. It was very small but it had sent


3/23/04

5:58 PM

Page 37


37

out some fine hair-like roots into the portal vein, the main vein in your liver and they all decided that if they couldn’t remove all of it, it was better to leave it alone. And because it was so tiny, they think it will be many years before it becomes a real problem.’ I was warming to my story and it became easier – I wanted to believe it was the truth. ‘Am I going to die?’ she asked with a pleading look. ‘We’re all going to die, Darling,’ I said, reminding her that it was the only certain thing about life. Then came the inevitable question, the moment I’d been dreading. ‘How long have I got?’ ‘It’s impossible to know for sure,’ I began, making it up as I went along. ‘Because it is so small and doesn’t appear to be too aggressive, the surgeons think about . . .’ (my heart was in my throat, my tongue was so dry I had to force the words out) ‘. . . five years, but there are lots of things we can do to lengthen that.’ It was done. All I had to do was make sure that nobody contradicted my prognosis. ‘What things? If I’m dying, I’m dying.’ She was becoming angry. ‘Just trust me, there are lots of things. People beat cancer all the time, you hear it in the news nearly every day – people beating the odds with diet, mind over matter, alternative therapies, all sorts of things.’ Then came a verbal intercourse that was destined to become our daily affirmation. ‘I’m going to die!’


38

3/23/04

5:58 PM

Page 38


‘Yes, but not today!’ She lay back in bed, obviously pleased with the answer. I sat and looked at her. She had an intravenous drip running into her right forearm, a tube from her lower abdomen collecting what they later told me were post-operative fluids, and a Foley catheter to collect urine. She would stay this way for days until the 30-plus centimetre incision healed. I stayed with her with her for hours, just looking at her as she dozed. The nursing staff made it clear that there was no pressure on me to leave. She was barely coherent when I decided to go at about 10 pm. I leaned over her and holding her hand I kissed her goodnight. I would be back tomorrow, I told her. I had a lot to think about and didn’t sleep well that night. Before I went to bed I made several telephone calls. I rang Regan first and explained it all to her. She decided to come home for a few days. Then I rang Irene’s sister, Regina, and a few close friends, some who didn’t even know that Irene was in hospital. There had been no need before but now I realised that Irene would benefit from visitors. Over the next few days she was rarely alone. Regan and I and a steady stream of friends and relatives boosted her spirits. I massaged her legs twice a day with her favourite herbal massage oil. In between visitors, she listened to meditation tapes and inspirational tapes, but, true to form, she was becoming impatient. By the fourth day all the tubes had been removed and she was encouraged to move about. She signalled her readiness to leave on the fifth day by making her own bed. She


3/23/04

5:58 PM

Page 39


39

arranged for her own discharge and on Saturday morning Regan and I arrived to visit to be informed that she would be leaving with us. An appointment was made to see the surgeon the following Thursday, and we left. Regan went on ahead to get the car ready as I pushed Irene through the ward in a wheelchair. The sights we saw as we moved through the oncology ward set the agenda for our discussion in the lift. The vision of one patient haunted her. He (or she – it was impossible to tell) was gaunt, propped up in bed with various tubes, some intravenous, one into the nose, a urine bag beside the bed, an oxygen mask and monitors beeping everywhere. I had seen him there like that for days and Irene had seen him when she strolled through the ward. I wheeled her into the lift. ‘Don’t let me end up like that,’ she pleaded. ‘Don’t let me die in hospital. Please.’ I didn’t speak. ‘Did you hear me?’ she demanded. ‘Do you understand what I mean?’ she said, almost growling. ‘I don’t want to die like that! Promise me you won’t let me become a vegetable. Promise me!’ As I turned towards her, our eyes met and her gaze frightened me – a combination of almost begging, pleading fear and helplessness and an implicit understanding of the significance of the question she was asking.


40

3/23/04

5:58 PM

Page 40


I had seen that unmistakable look before. Some years earlier, I had heard the screech of car brakes followed by a dull thud, and then the soul-penetrating whimpering of a dog. I had rushed down my driveway to its assistance, kneeling beside the poor animal. That’s when I’d seen that look. ‘But that was only a dog,’ I hear you say. But as this poor crushed beast’s life ebbed away, its gaze said to me, ‘Help me. Please don’t let me suffer any longer.’ I could see that its hold on life would be brief. While my neighbour scurried away to call the local ranger, I decided to respond to its needs. I had some ether in a pump bottle that I had used to clean glass slides. I saturated a cloth with the solution and placed it over the dog’s mouth and nose. Once it lapsed into unconsciousness I placed a large plastic bag over its head and, removing as much air as possible, asphyxiated the dog and ended its suffering. Although I was certain the poor animal was fully anaesthetised, the final death throes from oxygen deprivation sparked some negative comments from the caring horde that was drawn by the magnetism of suffering. But I was comfortable with my actions and the ranger concurred when he arrived some time later.

Irene’s eyes begged me for the same kind of mercy during those brief seconds in the lift. How was I supposed to respond? As I would in the months and years ahead, I


3/23/04

5:58 PM

Page 41


41

responded almost casually. ‘Of course I wouldn’t let that happen to you!’ That was my first promise. ‘When I can’t handle it any more, when there is no quality of life left, and before I lose all dignity, promise me you will help me. You’ll know what to do,’ she pleaded, giving me what would become the look. It is amazing the decisions you can make during the mere seconds of a two-storey lift journey. ‘Of course, Darling. I promise.’ I responded with the only answer I could give in the circumstances. What would you have said?

The journey home was full of positive talk. Regan was gushing with encouraging suggestions, Irene avowed her deep commitment to beat the odds and I was in total agreement with everything behind my veil of well-disguised, totally believable deceit. We spent the rest of the day and Sunday together, just the three of us, happy with our own company. We avoided anything negative and resolved that the next stage of our lives would begin on Monday Regan stayed with us until late Sunday evening before returning to Ballarat and uni again on Monday. Comfortable in the belief that there were many happy years ahead, she took comfort in her mother’s reassurances that, for all intents


42

3/23/04

5:58 PM

Page 42


and purposes, life should continue without change. Irene insisted that Regan should continue with her education and enjoy her life to the full. Over the next few days Irene slowly regained her appetite. She was still not eating as well as I would have liked, however, and she continued her almost vegan diet. Fruit became her mainstay, and she grazed instead of eating meals. Eating as much and as often as she needed to, she was outwardly a picture of health when we returned to the hospital on Thursday. The surgeons were amazed at her post-operative recovery. The incision was not yet two weeks old and had healed remarkably well. She was showing no signs of physical distress. ‘I know you did the best you could,’ she told the surgeon. ‘If this cancer can be beaten, it’s up to me now.’ ‘If it can be done, Irene, you’re the one who I think can do it,’ he answered with sincere encouragement. ‘You look great.’ The prognosis was not discussed and, other than the visible scar, neither the operation nor the lost swab were mentioned. When we were leaving, I turned to close the doors and shot him a questioning glance which said, ‘You can’t be right about Christmas!’ His response was a noncommittal shrug and an ‘I don’t know’ curl of his lips.


3/23/04

5:58 PM

Page 43

hapter Six B E AT I N G T H E O D D S

O

ur first real emotional test had been in 1980. This was also the first time I had witnessed my wife’s incredible mental strength and willpower. We’d been told Irene could not conceive so precautions were not necessary – or so we thought. When we learnt she was pregnant we were ecstatic. The first indication of pregnancy was Irene’s almost instant dislike of alcohol and cigarettes. For the whole term of her pregnancy she didn’t drink or smoke at all. That slowed me down a little too – she couldn’t control my drinking, but I was banished to the backyard to smoke. After Regan was born, Irene gradually started drinking but she never smoked cigarettes again. We were married in September 1980 and began readying ourselves for the birth of our child, expected in January 1981. But in October Irene began experiencing strong early signs of labour, and I had to rush her to hospital.


44

3/23/04

5:58 PM

Page 44


She was barely 27 weeks pregnant and miscarriage was a real possibility. The medical staff at the Royal Women’s Hospital in Melbourne were incredible. Their skill, coupled with Irene’s tenacity, delayed the labour for nearly 60 hours while they administered a full course of seventeen or more steroid injections to bolster the unborn child’s respiratory system. This was recognised as the prime cause of death in premature babies. I was there, I witnessed it all. I was in awe of Irene’s battle with nature. How she fought with and willed herself through the ever-increasing frequency and strength of the contractions until she was given the all clear was an inspiration to all in attendance. Finally, in the early hours of 20 October 1980 she gave birth to a tiny little girl, nearly fourteen weeks premature and weighing less than three pounds. We named her Regan. We were on an emotional rollercoaster for months, visiting Regan twice a day. We would leave every morning with our spirits raised only to have them deflated every evening after the mandatory counselling which was meant to prepare us for potential disaster overnight. We became closer as a result of this torture but Regan, displaying early signs of her mother’s tenacity, rose to every challenge. We were able to take her home with us before Christmas, long before she was considered full term. Regan’s physical and mental development exceeded all medical expectations. By the time she was four she had no lin-


3/23/04

5:58 PM

Page 45

B E AT I N G T H E O D D S

45

gering signs of prematurity and matured at the same rate as a full term child. This was a blessing. Prior to Regan entering our lives, I would organise my workload to allow for at least one day off midweek and Irene and I would spend it together. An integral part our day became the ice-filled car fridge containing an increasing amount of alcohol. By early 1980 our primary reason for the midweek outing was a drinking day. We also adopted the habit of attending the local hotel for an all day Saturday outing, and inevitably we would end up intoxicated. We also met most nights after work at one of the local bars, and usually met our friends for a barbecue on Sundays, more often than not at our house. Alcohol became an important part of our lifestyle. A slab (24 cans) was the standard entry fee to our weekend gatherings, and there were never many beers left at the end of the night. As all our children got older they were able to entertain themselves, and as long as the women prepared the salads and one of the males remained sober enough to control the barbecue we all had a wonderful time as we slid into alcoholic oblivion. But time would show that it was purely the alcohol that held our social group together. As Regan got older and became involved in many extracurricular activities – singing and dancing, tae kwon do, piano lessons, swimming lessons and equestrian training – all our lives changed for the better. Irene and I came out of the eighties and headed for the


46

3/23/04

5:58 PM

Page 46


nineties marginally worse off (financially) than we entered them. We had accumulated and lost great amounts of money through, in retrospect, some unwise business decisions. We could deal with the money issues by tightening our belts but our real problem was alcohol. We had trouble controlling our drinking and by 1990 it was becoming a serious problem for us, placing the first real strains on our relationship. As Regan became more observant, we realised we were losing the battle. And we didn’t want our drinking to impact on her. We struggled all year as our quest for responsibility clashed with our dependence, setting one unachievable aim after another. We constantly set time and quantity limits but regularly disappointed each other. And then, predominantly due to Irene’s willpower, we both committed to total abstinence from Monday 6 January 1992. Until the last day of her life she never deviated from that, and then it would my doing. Coming to terms with sobriety brought us together again. We alienated ourselves from all our drinking friends in an attempt to remove temptation – we effectively withdrew from society. Our only real contact with the outside world was through work and when we attended Regan’s extracurricular activities. Life was good and we were all happy with our own company. 1992 was a stellar year for us; in true Australian vernacular we ‘worked our rings off’. We paid off a lot of debts, often working together around the clock. I was involved in the building maintenance and renovation industry at the time


3/23/04

5:58 PM

Page 47


47

and I often slept on the job to get more into the day. I wrote a book about my 25 years experience in the Australian motor car industry. It was also Regan’s last year of primary school, and Irene became obsessed with our daughter’s secondary education. High school had not been a happy time in Irene’s life and she was determined that Regan would not suffer the same fate. The education of girls was not a high priority for her parents or many Europeans of their generation, and as a result Irene struggled through her brief time at high school without much encouragement and support. Girls were supposed to marry and have children.

Morongo Girls College, perched on Bell Post Hill, was a very imposing structure, towering above the suburb of Bell Park in Geelong where Irene grew up. She envied the girls from there: they were the elite. She had heard about the boarders – the super elite – who lived there. Irene imagined them to be like princesses safe in their castle and often fantasised about life on the hill. We explored the local secondary school opportunities for Regan, becoming increasingly disenchanted with the offerings. Irene suggested Morongo. I immediately dismissed it on the basis of cost. ‘We’re not in a position to be even considering one of Victoria’s elite colleges, even as a day student, let alone a


48

3/23/04

5:58 PM

Page 48


full-time boarder,’ I told her. ‘Yes, it would be fantastic, but let’s get back to reality. We simply can’t afford it.’ The more negative I was, the more fiercely determined she became. ‘Your problem, Ross, is that you don’t have enough faith,’ she told me. ‘If we don’t believe it can happen, it never will.’ She turned my thought processes around and securing a place for Regan at Morongo became our priority. Whenever I suggested possible alternatives she would shake her head. ‘Regan will be going to Morongo, don’t worry about it,’ she would say, as if it was a foregone conclusion. I kept working towards that goal, doubtful that it would happen, but Irene’s resolve was set in concrete. Regan sat for a scholarship and was awarded a 50 per cent reduction on both fees and boarding for her first two years at Morongo. Irene’s determination and faith had paid off yet again. Somehow we managed to afford it and Regan completed her secondary education as a full-time boarder. Irene, in effect, began to re-live her life through Regan, everything she had wished she could have done was offered to Regan. She was not to be denied all the opportunities unavailable to her mother. Irene never went on school excursions. Regan attended them all – interstate, the outback even Indonesia and China. Irene wore second hand uniforms, always too big in the hope she would grow into them, but being such a tiny little thing she never did. We equipped Regan with everything new, tailored to fit, and quality and longevity were more important


3/23/04

5:58 PM

Page 49


49

than price. I arranged an account for her at the nearest bank so her weekly allowance could be deposited, and I opened accounts with local department stores giving her access. Regan and Irene were so close I knew the separation of boarding school was going to be hard on them both. But Regan soon developed new friends and interests that occupied her time, and Irene tried to be strong. We saw Regan as often as we could and she never once weakened or displayed any misgivings about sending Regan to boarding school. Whenever Regan shed a tear or showed any signs of homesickness, Irene was quick to encourage her and hide her own feelings of loss. Whenever we drove up the hill towards the boarding house, Irene’s eyes would light up. She was so proud that our daughter had achieved this distinction and would look at me with a look that simply said, ‘I told you to believe and have faith. Thank you, we’ve done it’. She was safe in the knowledge that Regan was now getting the best education available to her, while establishing her own independence and identity. We went about organising our lives so we could afford to keep her there and could provide a warm home environment when she came home for the holidays and the odd weekends. We were told late in December 1994 that, due primarily to irresponsible fiscal management, Morongo Girls College would not be opening in 1995. We had less than a month to find a replacement. After investigating both availability for year nine and the relative costs and benefits of inner-city or suburban girls colleges, it became obvious that we would


50

3/23/04

5:58 PM

Page 50


have to look to the rural areas. Regan made it patently clear that a boarding school was the only option. I took a week off work and Regan and I went to investigate them all personally; we had a list that took us all over Victoria. The college we finally settled on wasn’t even on our list. After visiting I think six or seven schools and eliminating them all for a variety of reasons, we were in Hamilton in the north western sector of Victoria. We were driving down the main entry highway looking for a motel. I had decided to stay there the night, then head for some options as far away as South Australia. I noticed a rather small sign on a street post which directed me to a college we hadn’t heard of: ‘Good Shepherd College and Boarding School’. Good Shepherd College turned out to be a very small Lutheran school with somewhere in the order of one hundred and thirty students from year seven to year twelve. Class sizes and the teacher-to-student ratio were exceptionally small. In year twelve Regan was the only music student. The school had just completed brand new motel-style boarding facilities, which were due to come into service in 1995. I rang and the vice-principal met us and proudly gave us a guided tour. Before that tour was concluded Regan and I concurred that this was it. The only negative was the distance – depending on stops it was at least a seven-hour return trip. Over the four years Regan was there I got to know every bend in the road. To say that Regan was liked, respected and excelled at every year level would be an understatement. In year twelve she was


3/23/04

5:58 PM

Page 51


51

sporting house captain, music captain, prefect, on the student representative council and boarding house captain. She was also the student spokesperson at the debutante ball.

While Regan was away at school, we established a bodytoning and weight-loss studio which gave Irene the opportunity to further her interests in women’s health care. She thrived in this situation and as a result of her open and caring attitude made many new friends. In 1997, we downsized and moved the studio to our house. Working from home allowed Irene to consolidate her working hours and gave her more time to concentrate on her studies in natural hygiene and other vegetarian, natural and non-medical therapies. She had become a lacto-ovarian vegetarian, a nondrinker and an active anti-smoking campaigner. She walked our boxer, Cory, for hours each day, exercised regularly and meditated twice a day. She lived her life in accordance with her teachings, her energy levels were amazing and she looked a picture of health and vibrancy. By 1997, we’d well and truly got the better of the booze, we were managing financially, Regan was content at boarding school, Irene had found something she loved doing, and I was working full-time in the motor industry and life was good. It seemed as if all our troubles were behind us.

hapter Seven THE BUSINESS OF LIVING

W

hen faced with your wife being given a prognosis of five months to live, what do you do? Surrender or fight? Surrender was out of the question – I would have to undo too many lies. By now I had told so many that sometimes I actually believed she had five years to go. So fight it was! Irene set her own aims and targets, and my job was to do everything possible to adhere to her wishes. Hearing that Irene didn’t have the major operation she went in for, my former employer rang her to suggest that, if she didn’t need me 24 hours a day, could they hire me for ten. She assured him that it was okay to approach me, and that she would be supportive if I chose to return. I went back to work and things started to look a little brighter.

We had more or less given up on mainstream medicine as the source of a possible cure. Symptomatic relief, pain control


3/23/04

5:58 PM

Page 53

THE BUSINESS OF LIVING

53

and palliative care was all that was on offer. I knew that five months wasn’t long enough to embark on any long-term cures, but Irene didn’t know her sentence. Believing in the five-year time frame, she set herself on a course of physical and mental cleansing. She was convinced in the power of the mind, acknowledging that her body must be free of toxins in order for it to have any chance of repairing itself. I spent countless hours on the Internet exploring all possible methods of self-cure. We tried them all, I think, irrespective of cost, inconvenience or physical discomfort. We tried them because as long as there was life there was hope. Nearly all alternative cancer therapies are horrendously expensive. The cancer cure industry thrives on hope and when sufferers are faced with the possibility of a reprieve from their death sentence, cost becomes less relevant. In some ways, cancer ‘cures’ must rate alongside other irresponsibly marketed cures, such as baldness, instant no-effort weight loss, cellulite removal and the other miracle cures, most of them being pitched at those who would rather replace effort with dollars. But those other conditions are vanity related. Cancer is about life and death. A vegetable-juice based detoxification program was Irene’s first choice. A German doctor had apparently achieved dramatic results with a host of medical conditions, including cancer, by strict adherence to his vegetarian juice diet. Irene embarked on it immediately. She showed no signs of displeasure as she drank her daily allowances of beetroot, sauerkraut and various other


54

3/23/04

5:58 PM

Page 54


vegetable juices. I consulted with the importer of these juices to establish the correct intake for Irene because her weight was below that in the enclosed directions. In retrospect I find it hard to believe that we followed all the instructions, either enclosed with or written on the packaging of the myriad of so-called ‘cures’ we tried. They were very explicit, very exact and had to be followed to the letter. I’ll never know whether any of them really were beneficial – they may have been, either individually or cumulatively, and perhaps in small ways – but I do know for sure that they were very expensive. And ultimately, none of them worked. On the basis that the mind controls the body, we sought advice from psychiatrists who suggested that hypnosis may be of some assistance in the reprogramming of the mind. That created a small problem because a course of hypnotherapy is not recognised as being part of cancer treatment and so is not available through the health system. It can only be pursued at one’s own cost. And the cost of it was exorbitant. Did it contribute towards extending Irene’s life? I believe it did, but to what extent we will never know. Eastern medicine offers so many possibilities: acupuncture, religion and a never-ending array of treatments involving varied concoctions of herbs. It seemed that mentioning cancer of any kind to a practitioner meant that you could just about guarantee increasing the cost of your visit. Suddenly, covert actions were needed to obtain the best mixture because it was a closely-guarded secret. From my perspective, if the price had not also been a secret, I would


3/23/04

5:58 PM

Page 55


55

never have got to first base, would therefore have excluded it from Irene’s treatment options. Unfortunately, price is the last thing discussed when the very mention of the cure is underground; Irene had been told of this before me. My task was to obtain certain herbs for her, full stop! So I did, and at a cost I hate to recall. Did those herbs solve the problem? Obviously not. Did they help? I don’t feel the results were worth the cost. Positive thinking is another widely exploited practice. Audio and audiovisual packages are available to make you rich, make you slim, make you smarter and so on. There are also some programs that work subliminally, that supposedly allow you to harness the power of your inner self. We went straight to the platinum category, straight to the best, and undoubtedly the most expensive, self-awareness programs we could find. Did they work? Was it worth the money? Was it worth the effort? I think they gave Irene a stronger belief in her own ability to fight on and not to succumb. Her ‘neversay-die’ attitude became her ‘never-ever-say-die’ attitude. She flatly refused to contemplate not being able to rid herself of this disease. Laetrile, or vitamin B17, was another thing we tried. Widely purported to be the cure for cancer, B17 advocates put forward some very logical arguments to support their claims that cancer thrives because of a simple vitamin deficiency. I read books on it, researched it on the Net and even went to a lecture given by Laetrile’s most ardent supporter. He went to great lengths to point out that vitamin C cured and protected


56

3/23/04

5:58 PM

Page 56


against scurvy, a terminal condition experienced predominantly by early seamen who did not ingest fresh fruit or vegetables while at sea. Daily rations of oranges, limes and cranberries solved the problem. There have been a whole host of apparent miracle cures that, as medical research developed, eliminated many diseases due to the recognition of vitamin deficiency. Originally, the most potent source of B17 was the stones of almonds, or bitter almonds as they were known. It is the presence of B17 that gives the bitterness. Laetrile also has anelevated concentration of cyanide (a recognised poison). According to its champions, regular ingestion of vitamin B17 could prevent, control or even cure cancer. For commercial reasons the bitterness had been bred out of almonds, and the most concentrated source available today is the kernel of an apricot stone. But where do you get a large quantity of apricot kernels? I rang one of Australia’s biggest canners of fruit and asked what they did with their apricot seeds. They were available for purchase in a minimum of 5-kilogram packages. But to order the stones I had to sign a disclaimer to say that I was only going to use them for propagation and that I knew the possible effects of ingestion or other uses. So, they were supposedly being purchased for my own purpose and the suppliers were not responsible for my usage beyond propagation. Really? How many people do you know who would want to grow thousands of apricot trees from seed? We did try marijuana. Many people claim it to be a pain reliever. Irene and I had many discussions about this


3/23/04

5:58 PM

Page 57


57

issue. While I don’t believe it has an actual analgesic effect, the euphoria that accompanies its intake did tend to take the pain to a different plane, without actually reducing its intensity. It somehow made it more tolerable and less intrusive. Irene reported it gave an overall calming effect, placed her in a much more relaxed mood and assisted her sleep patterns. She also found it a great relief when suffering bouts of nausea. But by far its greatest benefit was in the area of appetite enhancement. In the drug culture, this is known as getting ‘the munchies’. I noted that she nibbled more often, just small snacks, but in a situation where she otherwise had no appetite at all anything that increased food intake of any kind was a blessing. There are numerous methods of preparing marijuana for ingestion. They all work but in different ways for different individuals. I believe we tried all effective methods. As the disease progressed the different methods had varied results. Experimentation was definitely beneficial and provided a variety of positive effects. Operation Marijuana didn’t work as a cure. Neither of us expected it to, but I can personally attest to the many, many positive benefits. In fact I cannot even identify one negative. Of course, once we determined our relative tolerances, I abandoned its regular use. I had to remain lucid and in control at all times, but there were the odd occasions when I used it as my own escape. As for the benefits of exercise, Irene could be best described as a health and fitness nut. Heading into the year


58

3/23/04

5:58 PM

Page 58


2000, six months or so after receiving her death sentence, she must have been the best looking, fittest dying person on the planet. She really looked terrific. As a legacy of our failed venture into the health and fitness industry we had acquired some very efficient exercise equipment. Irene raised her exercise regime to a new level. Regular walks with our boxer, Cory – so named for his coruscating (bright and sparkling) eyes – and little Pixie, a terrier cross about twelve years old, as well as a very healthy diet and an extremely positive state of mind, transformed her into one of the healthiest looking 51 year olds you would ever see. She hadn’t lost weight and skin fold tests showed an increase in lean muscle mass. From her external appearance no-one would have guessed her secret. She would prance around town, graciously accepting all the ‘Gee, you look terrific, Irene. What have you been doing with yourself?’ compliments. If only they had known what was going on inside. Was the exercise worth the effort? I’m convinced the benefits were enormous, undoubtedly lengthening her precious life. Even before this disaster in our lives, we had both become regular meditators, Irene being a devout practitioner. Once she was diagnosed, she used her meditation time to focus on programming her inner control mechanisms to spring into gear and eradicate the invader. I don’t really know if this and other mind exercises were of any help physically, but I am certain they combined to give her a sense of inner peace that allowed her to approach her journey calmly and rationally.


3/23/04

5:58 PM

Page 59


59

We began every day with the same affirmation. She would ask, ‘Am I really dying, Ross?’ and each day I would answer the same way. ‘Yes, but not today!’ Having received her acknowledgement, sometimes verbally, but more often with a nod and a smile, we got on with the business of living. For the first two years even I thought she was invincible.

As the days, weeks and months passed we lived life pretty much as it used to be with three notable exceptions: a different diet, an ever-increasing range and dosage of medicines and drugs, and fear of what the future held for Irene. We knew from our fight against alcohol that we would increase the chances of living a normal life if we did it together. A near vegan and a meat-loving Australian – hardly an ideal pair to take on a diet of the good foods of life (from Irene’s perspective). From my perspective, it was a multicoloured low-taste diet! As time progressed and I became chief cook and bottle washer, we more often than not ate separately which allowed me to increase my meat intake. I must admit that the change in diet did me good. I’d never been fitter. It was later, in the final months, that my very sedentary lifestyle took its toll. Irene loved our diet and I really was surprised at how colourful and appealing vegetables can be. She also increased her fruit intake over time. But while she still looked fantastic, after about eighteen months, her stamina level was significantly reduced. Her often twice-daily walks with our two


60

3/23/04

5:58 PM

Page 60


dogs were becoming a chore. The evening walks were getting later and shorter. Then, around Christmas 2000, God intervened to lighten her load. Cory became ill and we were advised to have him put down – he had cancer and it had reduced him to a point where his quality of life and prospect of recovery were zero. It was traumatic for us, to see him go, but also a relief to be relieved of the duty of walking a big, energetic dog. Medication itself was an extrememly time-consuming part of every week. Deciding what was needed, determining effectiveness and dosage by trial and error, seeking alternative suggestions plus the constant trips to the pharmacy – it all seemed neverending. Towards the end it was simply a matter of increased dosage but early on, every different symptom had to be dealt with as it occurred. Pain management was a never-ending process with varied mixture and doses, but constipation, diarrhoea (unbelievably, often both at the same time), lack of appetite, oedema (swelling), nausea, headaches and difficult sleep patterns could only be dealt with as they occurred. The oncology ward at our hospital offered an amazing virtually on-demand service where any small hiccup or problem we had was solved with a telephone call. It was either, ‘It’s an acknowledged side effect’ – in other words, just tolerate it, manage it with a variation on existing medications – or, ‘Bring her in!’ It was a marvellous service and a terrific support for us in our relative isolation. For most of 2000, I would spend up to four hours a day


3/23/04

5:58 PM

Page 61


61

searching on the Internet for anything and everything related to cancer. Over time, I encountered a multitude of ‘cures’, an enormous number of which I can only describe as quackery: promises of all sorts of wonderful results, all at a price. It was a very laborious undertaking to sort the worthwhile from the useless. Every time Irene’s circumstances changed, my many hours researching on the Internet allowed me to come in from the dark and communicate with the medicos in terms we both understood. Often when Irene was there I used my knowledge to talk to the doctors in what seemed to her like code. Of course, through all of this I only told Irene the bare minimum. I would decode these discussions for her later, relating only the positive and beneficial aspects. The oncologists encouraged my continuing research and welcomed my suggestions regarding newly discovered medications and treatment modalities. These were often as simple as the newfound success of previously non-considered medication for longstanding symptoms. They considered my efforts of assistance to them – ‘We just haven’t got time to do it all’ – and definitely of benefit to my mental state. I became much more a part of it all because I knew what they were talking about. I would often print out anything encouraging as well as the good news stories. And giving Irene hard copies to read from sources all over the world gave her a sense of involvement in the management of her disease.


62

3/23/04

5:58 PM

Page 62


Fear was with us all the time. And endless questions, like, ‘If I hadn’t done this or that would I still be in this situation?’ and, ‘Why do I have to do this or that?’ Irene would accept a variation in medication with little objection but immediately interpreted an increased dose of an existing drug as an obvious worsening of the situation. I remember only too well when all the alternatives had reached their maximum effective levels and morphine – our last resort – was ordered for pain management. This resulted in a short-term feeling of surrender, Irene showing a strong reluctance to take the prescribed dose. Unlike most medication, the different doses of the sustained release morphine are colour coded, so I couldn’t mislead her. Then, to my surprise, she bounced back with, ‘What does it matter? As long as it doesn’t hurt, I can live forever like this.’

Every visit to the hospital was accompanied by the look. In the early stages, I would get it as we walked through the wards, then more often in the later stages as I was forced to push her through those same wards in a wheelchair. Those piercing eyes of hers. I knew exactly what that look meant and that I was being silently asked to validate my two promises: ‘You won’t let me die in hospital’ and ‘When I’ve had enough, and before I lose all dignity, when I ask you to, you’ll do it, won’t you?’


3/23/04

5:58 PM

Page 63


63

I was in a no-win situation. I could agree with her to placate her, or wait for her to ask again or open up the discussion in which case I would have to bear her tirade of, ‘It’s my body, it’s my life and I don’t want to die in hospital reduced to a vegetable with no dignity or value of life’. Her argument was very persuasive and gave me no option other than to agree.

Try to put yourself in my position. You have a wife who has been a part of your life for over 25 years, who has been diagnosed with a terminal disease. She has shown no outward signs or symptoms other than back pain for over eighteen months but has acknowledged that she is dying, regularly saying ‘You’ll know what to do when I ask you, you’ll do it, won’t you? Won’t you?’

At the very minimum we would discuss her demise at least once a day. Every day began with our normal, ‘Am I really dying?’, ‘Yes, but not today’ ritual and most days it would come up at least once more. That sounds as if she was wallowing in it but in a way she took the subject of her death very lightly, accepting that she was dying while being determined not to surrender without a fight. It was more that she was open for discussion on the subject at any time. Most people she associated with during the day had no


64

3/23/04

5:58 PM

Page 64


idea about her illness unless she told them. She was a volunteer at the local Salvation Army shop. The people she told were not aware of the medical prognosis that said she should be dead by now. Things were going along fantastically well when we encountered a problem known as ‘ascites’. We were totally unprepared for this, although it is a fairly common, and unpleasant, by-product of abdominal carcinomas. Ascites is a build-up of fluid in the stomach cavity, in the area known as the peritoneum. In simple terms, as I understand it, the tumour, the growth, was acting like a dripping tap and continually leaking fluid into the cavity. This had two immediately visible affects. Irene expanded in the stomach area – a distended stomach they called it – and the surface of her skin was obviously drying out, so that her eyes became more sunken. In hindsight, her eyes were the true barometer of her condition. Her condition had changed from uncomfortable on Friday afternoon to unbearable by Monday morning and she looked nearly full term pregnant, so I rang the hospital. I hadn’t needed to talk to anyone there for quite a while but the receptionist still recognised my voice. Small personal things like this became special – it made me feel as if we mattered. I spoke to the oncologist on duty, and he checked Irene’s files and advised me in the most casual manner to bring her straight in. Even though we had been thinking the worst all weekend, watching her abdominal area expand, hoping it would go away, while instead it stretched and became more


3/23/04

5:58 PM

Page 65


65

uncomfortable, I didn’t make the call until Monday because we weren’t as well known to the weekend staff. ‘Bring her straight in. We’ll have to do a tap,’ he’d said without hesitation. It doesn’t sound like a big deal, does it? Guided by ultrasound and with a local anaesthetic, a long syringe is inserted into the area where the fluid has built up, and as it is withdrawn it leaves a very thin outer cover behind. Two red strings are tightened and the tube becomes a spiral internally. Because of this, it is commonly referred to as a ‘pigtail’. It is adhered with a circular patch at the point where it comes out of the skin, allowing the pigtail to drain either into an attached bag or into an extension tube connected to a bag placed on the floor beside the bed. This bag is emptied as often as needed. We soon came to realise that the effectiveness of the ascitic tap is relative to the time it is left to drain. It was not uncommon to extract up to five litres of fluid on an overnight stay. That was by far the best option but they didn’t always have a bed available so sometimes it had to be done as a day procedure, allowing for a maximum of five hours. The shorter the draining time, the sooner our return. In spite of this, Irene preferred the day procedure because she hated staying overnight. With the taps being required weekly, the oncologist suggested a course of pancreas-specific chemotherapy to try to reduce the ascites. Gemcitabine is a chemotherapy drug that is given as a treatment for some types of cancer, including pancreatic. If it had been offered earlier, before we’d had to


66

3/23/04

5:58 PM

Page 66


deal with ascites, we would have refused it, but we took time to consider it now. Back on the Internet, I found some quality information. We deliberated for quite a while, and it was great to have reference material on hand. Was it worth the possible negative side effects of chemotherapy? Were they outweighed by the possible benefits? Irene made the final decision and I agreed. Chemotherapy it was – one course only with an undertaking that Irene could cease if she encountered any serious side effects. Knowing what I know now, I think chemo was a mistake and in many ways I consider the first chemo session to be the beginning of the end. The treatment made no difference at all to the frequency or quantity of ascitic taps. All it did was create a whole new set of side effects that needed medication: nausea, headaches, dry mouth, insomnia and eventually hair loss. The need for taps wasn’t reduced but the method did improve greatly. One morning, after an overnight stay, the nurse came in to remove the tap and check the bag only to find Irene getting dressed ready to leave. In her haste to get out of hospital – did I mention how she hated overnight stays? – Irene had emptied the bag and removed the pigtail herself. She had nothing to cut the string with, and had allowed it to uncoil as it was extracted. She yanked it out like a spring. So, given Irene’s demonstrated independence and after a bit of toing-and-froing between the various departments within the hospital, we followed a route suggested by the


3/23/04

5:58 PM

Page 67


67

extremely helpful ultrasound unit manager. Our aim was to eliminate waiting time and to allow for a long-term drain without hospitalisation. We ended up with a short cut direct line to ultrasound – one telephone call and they would be ready and waiting when we arrived. From our point of view, it was an incredible improvement to the whole process and we were very grateful to everyone who accommodated our needs. From then on, if a tap was needed I would ring at around 9 am and we would arrive by 10 am. We would bypass oncology and day procedure and go directly to ultrasound. With a few telephone calls from the unit manager, all the documentation was in place to allow an ascitic tap to be performed by the next available practitioner. The pigtail was left in, and we would leave the hospital carrying the drainage bag attached to a long tube. I would have to stop to empty the bag on the way home, sometimes more than once. Irene would be back home in bed by midday. As time passed we came to accept our weekly commitments including chemotherapy on Mondays and ascitic taps as needed. We stretched the taps out to ten-day intervals at one stage, and got it down to a routine that couldn’t have been any smoother had it been rehearsed each time. One day we had a turnaround time of one hour and fifty minutes: in by 9.50 am and out by 11.40 am. Absolutely everything went right, just as it should have in a perfect world. Then that became the norm, so that our aim was to have her in and out within two hours.


68

3/23/04

5:58 PM

Page 68


Chemotherapy stopped after the completion of the first course, the negative side effects outweighing any potential benefits. The need for the taps continued right to the end and, other than regular visits from the palliative care nurse, those two-hour trips became her only contact with the outside world. We were such long-term and frequent visitors, one section of the ultrasound recovery area was affectionately known as ‘Irene’s corner’. The staff became very fond of her. Irene had always had that effect on people who met her – she was such an engaging and generous person.

Regan would have sworn that she’d had 100 per cent of her mother’s attention whenever we visited her at school, yet many of the other girls from the boarding house would feel as if Irene had come to visit them too. Irene often took the role of surrogate parent for those girls, playing mother confessor and intervening to negotiate the resolution of minor conflicts. A special kind of buzz would go through the boarding house when Regan let the girls know that Irene was about to visit. When it was time to leave, I would always allow at least thirty minutes or more for the hugs, kisses, and farewells. Sometimes I thought there was two of her, the way she spread herself around.


3/23/04

5:58 PM

Page 69


69

I can’t see how on earth the tap procedure could have been considered a pleasant experience but Irene actually looked forward to our weekly visits, and she really was at her best on those days. This was to do with the comfort and relief she got, of course, but it was also about the two hours of pampering she received from the staff, a truly special group of people who we totally appreciated. They were in awe of her strength – this scrawny little talking skeleton who kept returning every week. The more time passed, the more they couldn’t believe that she was still alive. The chemotherapy had stopped some months ago, having not done any good at all. In some ways this was a blessing – chemotherapy bays in your local oncology ward are not places to seek encouragement. To me, it had been like walking into a morgue with living corpses. Everyone knew they were clutching at straws.


3/23/04

5:58 PM

Page 70

Irene six months before she died, November 2001


3/23/04

5:58 PM

Page 71

hapter Eight DOING IT HARD

W

e set challenges for ourselves – milestones that we were hopeful of reaching together. Our birthdays (both in March), Mother’s Day (May), Father’s Day (September), Regan’s birthday and Christmas. Regan’s twenty-first birthday was in October 2001 and Irene’s greatest wish was to be able to share and enjoy it, a feat she accomplished while still appearing healthy. This was a major achievement and perhaps our most memorable and significant milestone. We dressed up and went out as a family for the last time. Nothing to do with illness was discussed. There were times during the previous year when Irene had questioned whether this night would ever happen. She was so proud of Regan she literally beamed all night. I didn’t detect it on the night, but beneath her outward show of success came her first admission of surrender. As I


72

3/23/04

5:58 PM

Page 72


made her comfortable for the night she said, ‘I didn’t think I’d make tonight. I can go happily now. Didn’t she look beautiful? Aren’t you proud?’ She started to sob. I reached out and took her hand. ‘You both looked beautiful. I’m so proud of you both,’ I said with a smile. ‘Don’t worry, you’ll still be around for her wedding.’ She smiled unconvincingly as I bent and kissed her goodnight. Things started to slide in November. Even though she still looked good I could tell Irene was doing it hard. She would endure increased pain rather than admit to the need for a higher dose of morphine. I don’t know how long she deferred the need, but I could see a real difference in her once I’d convinced her to increase the dose. I became familiar with the warning signs, sometimes only minor changes in her disposition, and I was able start talking the dose up earlier, working up in firstly 5 milligram then 15 milligram increments. Irene began her twice-daily morphine pain management as a 50 kilo woman, having 15 milligrams twice a day. Her last doses – as a 24 kilo skeleton – were 120 milligrams twice a day with top ups of 10 millilitres of liquid morphine. Such was the reality of her deterioration. Before she began taking morphine she had a sort of regular if unusual sleep pattern. She would go to bed and read until 1 am or later, yet be bouncing around before 7 am the next morning. And before we knew about the cancer she used to joke that the older you get the less sleep you need. In the last weeks and days of her life she was probably only


3/23/04

5:58 PM

Page 73

D OI N G I T H A R D

73

awake for four hours, with at most one hour of complete lucidity. Even around August that year, her usual stamina wasn’t there. She was finding it a chore to walk Pixie. Then, quite unexpectedly, Pixie ran off one cold night, startled by the smoke alarm going off due to rising steam in the kitchen. She’d heard it before and had no reaction, but she bolted through her exit door, never to be seen again. No-one local saw her and by all reports she hadn’t been hit by a car. We worried for days over the little dog’s fate, but I firmly believe that both our dogs disappeared from our lives at the right times and for the right reasons. The likelihood of emotional stress was minimised because the circumstances were beyond our control. We had been allowed to solve two of our problems with no guilt. Thinking back, it couldn’t have been better. Soon after that, Irene would not leave the house alone and as time went on, getting her out was a real achievement. Other than the programmed weekly hospital visit for a tap there were often days on end when we didn’t leave the house. No-one visited much either. We had already alienated ourselves from our drinking buddies; it was as if sobriety was a contagious disease and we had even watched people cross the road to avoid being forced to confront us. We laughed at them at the time, but nine years later I cried, knowing that Irene wanted and needed visitors, those friends that had disappeared. As time went on, it was only relatives and one couple


74

3/23/04

5:58 PM

Page 74


who called. They had been through their own horror times and they were our only true friends outside family. They know who they are and I thank them. There were a few who can be excused for not visiting towards the end, true friends who were not emotionally strong enough to witness the decline in Irene’s physical appearance. She knew how they felt and didn’t hold it against them. For others, there was no excuse and the disappointment cannot be erased.

From the Greek roots eu, well and thanatos, death. Literal meaning: an easy death. Putting to death by painless means. I think the subject of euthanasia, mercy killing, putting someone out of their misery before they suffer indignity, or whatever you choose to call it, is widely discussed by sufferers of terminal illnesses and their families. No caring person would want to witness slow, painful and, in many cases, humiliating deterioration of a loved one. Irene’s first wish was to be able to die with dignity. Her second wish was not to die in hospital. I had promised to help her in both cases. We became very aware that hospitalisation for whatever reason in the final stages of her illness would remove any possibility of intervention on my part. We would then be forced to rely on the compassion of others – an unknown quantity. We told the medical team that if she died in their care, she did


3/23/04

5:58 PM

Page 75


75

not wish to be resuscitated. Prolonging her life through mechanical means was also not an option. I want to make it clear that all of our discussions were conducted while Irene was still showing no visible signs of the disease. No-one could suggest that I coerced her in any way; at this early stage I was the researcher and adviser only. My role was to listen to and record her decisions. And all these discussions were completed and our resolution set in concrete well before Christmas 1999. Our discussions would leave indelible impressions and give us some of our closest intellectual contact. With informed disregard for the possible legal ramifications, and with the full knowledge that there would be many people in this country and around that world who would consider that I should suffer retribution for my actions, we concluded that if assistance was needed, it would be at Irene’s direction, whether or not she was capable of inflicting the final blow herself. The moment would be of her choosing. In return for my involvement she promised to continue the fight as long as she possibly could. A most important part of her promise was that no matter how low or despondent she became, she would not take matters into her own hands. She had entrusted me with the task and knew I wouldn’t let her down. A botched attempt on her part would only make matters worse. She made me reaffirm my promises time and again. When she asked for validation I had to spell it out. More often than not she just gave me the look. If I gave up on our plan it would deprive my daughter


76

3/23/04

5:58 PM

Page 76


and I of hours or days of her company during a period where mental lucidity and conversation would continue long after her physical capacity had diminished. We didn’t want to miss a minute of that experience. There would be times, irreplaceable moments, in the last few weeks and even during the final days, when we were so close that we communicated without words. I could pre-empt her needs, waking without apparent reason at some ungodly hour, say 4.30 am, and automatically going to the kitchen to prepare a cup of chicken noodle soup, cooling it after preparation until it was lukewarm, just the way she liked it. I would arrive back at her bedside just as she awoke requesting a warm drink. It was truly uncanny. Not knowing how long she had to live, I began exploring the various methods available to comply with her wishes. At that stage I had no way of knowing that the health system would actually provide the wherewithal. The laws of the land are that individual unassisted suicide is acceptable, the culprit being beyond prosecution. Assisted euthanasia, or aided suicide is illegal. In simple terms this is tantamount to premeditated, calculated murder. I don’t recognise that interpretation at all, check any dictionary and you will find that somewhere in the definition of murder the word ‘malice’ is mentioned. How can any intelligent person even give malice a passing consideration in cases like ours? Malice is defined as ‘a disposition to injure others for mere personal gratification, or from a spirit of revenge; spite or ill-will’. This interpretation is clearly at odds with the purpose of even contemplating the act of assisted


3/23/04

5:58 PM

Page 77


77

euthanasia. Just the deliberation of the possible options was horrific. My thought processes would often be arrested by the reality that I was planning the death of the most significant, closest, most intimate and beloved person in my life. I often abandoned the search. Then, after quitting, a greater power seemed to torment me with visions of that dog’s eyes – just its eyes, pleading for mercy – and that distress alone empowered me to continue seeking the means to a peaceful end. Suffocation, as I had done with the dog? No, I couldn’t do that. Poisons? No, I don’t think so. Drugs? What sort? How much? How to get them? One combination appeared often, known as the ‘Bronston cocktail’: heroin, cocaine, and or amphetamines mixed with alcohol had proven to be successful formula, but in reality, where was I going to obtain the ingredients? Heroin, cocaine and amphetamines are widely available, and can seemingly be procured with consummate ease but I don’t mix in those circles. Besides, both Irene and I had an aversion to syringes. My fear came from a mercenary dentist in my early years who (in my opinion) couldn’t justify his fees without an evident treatment such a filling or extraction. All his procedures required local anaesthetic, and it felt like he played darts with my mouth. Irene had undergone that many blood tests, and had endured so many intravenous drips, particularly during chemotherapy. And sometimes it seemed that the principle in locating a vein was ‘third time lucky’. Clearly, anything involving a needle was out.


78

3/23/04

5:58 PM

Page 78


I realised that as her condition deteriorated she would become increasingly dependent on me, that her quality of life and ability to perform even some of the basic functions would be reliant on my assistance. Knowing that when the time came it would be up to me, I began researching the Internet endlessly. I explored any site that even mentioned ‘mercy killing’ or ‘euthanasia’. I found out that all the suggestions depended on the ability of the sufferer to actually, personally, physically and totally alone make the final move. Whether it be by mechanical means triggered by a computerised device, as devised by America’s Dr Kevorkian, or simply by ingestion of some lethal dose, legally, the act must be by the sufferer’s own hand To me, that was absolutely unacceptable. If we were to abide by the law of the land, I would be absolutely and incontrovertibly unable to play a part. That would by necessity mean that Irene would have to be lucid, mentally capable and physically able to act on her own. It would have to be done sooner than if I was involved. My further investigations into euthanasia and suicide, assisted or not, on the Internet revealed an amazing and, in some cases, bizarre list of options. The majority of unassisted suicides involved what I consider ‘violent’ means. Hanging, gunshot, opening of blood vessels with blades, ingestion of toxic substances, numerous available poisons (even Drano), gassing, electrocution, asphyxiation, drowning and various other obscure methods.


3/23/04

5:58 PM

Page 79


79

We decided that drugs were the way to go. Which ones, how to administer them and when were questions that didn’t need to be answered at this early stage. Then a chance viewing of a documentary of sorts about the capital punishment laws in America, a case in Arizona, I think, gave me the drugs and dosages needed. A large part of the story was devoted to some humane methods used to execute a human being. There were three stages: (1) The subject was intravenously injected with a sedative type muscular relaxant. (2) Then an undisclosed substance was injected to stop the heart, and obviously the respiratory system. I have read elsewhere that this substance often produced a feeling of euphoria. (3) When the subject had no pulse and had ceased to breathe, a final extremely toxic compound was introduced to effectively shut down all bodily life functions. After this triple whammy there was no return. I surmised that while intravenous introduction of these drugs was needed to kill a grown adult male, oral ingestion would be as successful on a frail, then under-50 kilogram woman destined to lose even more weight. After many long and deep discussions, it was agreed that when the time came, we would try to follow this proven successful method as closely as possible.


80

3/23/04

5:58 PM

Page 80


As the years went by, I began to accumulate a vast and varied amount of prescription medicines. I had researched their usage, knew what they were designed to do and in most cases how they achieved the desired effect. I was also aware of all of their contraindications, meaning what cannot be taken with what due to possible increase or decrease in their effectiveness. Most contraindications were warnings of increased efficacy in combination with other drugs, generally in their accumulated sedative affect. I decided from the very beginning not to discard any of Irene’s medication. In the early days, when her deterioration was gradual, new medications were introduced on a regular basis, all designed to act on the symptoms only. A cure was never an option. All changes in the drug regimen were instigated by the decreasing efficacy of the original medicine. Many such changes simply involved a stronger dosage, others were decided upon because the drugs just didn’t work any more so more powerful alternates were adopted. I saved them all, along with notes of their usage and particular contraindications.

After Christmas 2001 passed, we cautiously courted the unlikely possibility of seeing Christmas 2002 together. But Irene’s hold on life was becoming much more of a day-to-day proposition. The years of treatment had taken their toll – mobility was now becoming more difficult for her and I


3/23/04

5:58 PM

Page 81


81

generally had to support her physically as she fought to maintain some semblance of independence. So we set the next realistic target of our birthdays in March. Being only six days apart we would jointly celebrate our birthdays alternately, mine on the seventeenth one year and hers on the twenty-third the next. I am so happy that 2002 was her year. Regan came home to share her mother’s birthday. My sister-in-law and a few very close friends and I gathered around her bedside. Irene had great difficulty even blowing out two candles. Despite it all, she still had a smile for everyone. There were no real celebrations, she simply didn’t have the energy. It was her wish not to have any more visitors – she was now extremely conscious of her appearance and didn’t want anyone to see her in her emaciated state. She had been shedding hair for quite a while (an expected by-product of the chemotherapy) and now weighed in at around 30 kilograms. Regan took time off from her studies to spend as much time as she could with her mother during the month of April and my sister-in-law spent three or four days a week with us during this time, being both companion and housekeeper. I was now fearful of leaving Irene alone, even for the short times when, by necessity, I had to pay bills or just replenish our food supplies. We continued with the taps which were now extended to ten-day intervals. They were a real struggle. Despite the tiring trip and her having to be manhandled from the wheelchair to


82

3/23/04

5:58 PM

Page 82


the hospital bed, we persisted with the day procedure because being admitted even overnight was too risky in relation to Irene’s wishes. Her visit on Friday 29 April was to be her last. We made a booking for Monday 13 May, an appointment we never kept. Irene had me summon our daughter and her sister to visit on 3 May, and asked that they spend the weekend with her. Regan absented herself from her part-time job commitments for the weekend and Regina rearranged her schedule to be there. While waiting for their arrival Irene, with my assistance, dictated the following document: UNDERTAKING between, IRENE BERNADETTE ANDERSON and, JOHN ROSS ANDERSON, both of [address included].

I, IRENE BERNADETTE ANDERSON, of [address] wish it made known that I am aware of the terminality of my cancer, I am at peace with myself and my creator and I am waiting to leave my earthly body and continue on to the next stage of my spiritual evolution. While still lucid and capable of rational thought and decision making , I have made the following pact with my husband JOHN ROSS ANDERSON of the same address, and my family in order that they clearly understand my wishes, without any ambiguity. I believe it is the wish of every person in my situation to


3/23/04

5:58 PM

Page 83


83

pass away quietly in the night, but reality often presents a different scenario. This document will resolve the most likely. Should I deteriorate to the point of being unable to communicate verbally, a system of fail safe codes have been established between my husband and myself which will allow me to convey to him my wishes. Pain is manageable, but if increased dosage or further deterioration of my condition reduce me to a vegetative state, forced to suffer the humility of total incontinence and total helplessness, it is my intent, that before my deterioration removes my dignity and quality of life, to signal to my husband that I have endured enough. At this signal he has agreed to cease administering any treatment designed to prolong my life, and then, without the assistance of any other family members, using either our pre-arranged preferred method or any other at his disposal, to assist me to painlessly and peacefully hasten my departure from this life. Notwithstanding any legal ramifications, I also wish it known that I believe I have ultimate control over my life, as it is, and that it should be my right and mine alone to choose when to end it. I trust that my husband’s actions will be treated with veniality. The thought of becoming a physical burden and the cause of incessant mental anguish for the ones I love, is often more intolerable than the illness itself.


84

3/23/04

5:58 PM

Page 84


I know that my husband’s response to my request will be a response based on love, care and concern for my wishes. He has promised me faithfully and I know he will accede to my request. SIGNED THIS DAY THE 4TH OF MAY 2002 by; IRENE BERNADETTE ANDERSON : ......................................................

In the presence of Regan (Daughter) [address] ...................................................... Regina [name supplied] (Sister) [address] ...................................................... SIGNED by JOHN ROSS ANDERSON (Husband) IN THE CLEAR AND PATENT UNDERSTANDING OF MY WIFE IRENE’S WISHES. I ALSO HEREBY UNDERTAKE TO COMPLY WITH ALL HER INSTRUCTIONS AND DIRECTIONS IN THIS MATTER

...................................................... The main reason for calling everyone together was to witness that document, and verbally and in person to reinforce her intentions. The agreement was prepared, signed and witnessed on Saturday 4 May 2002. Everyone left the next day.


3/23/04

5:58 PM

Page 85


85

We all understood the reasons for her decision, but at that stage had no real idea of when (or if) her wishes would need to be implemented. When we were alone again, we rehashed the situation and the numerous possible scenarios. One thing that had became apparent to us both was the failure of the system to understand and fully comprehend the emotional cost and the profound effect of her decision on our psyches. If these decisions could have been made in consultation with medical personnel, we would have been reassured and far better informed. And further, if the procedure could be carried out under medical supervision, a truly painless departure would be enabled. She then added an unwritten rider to our agreement. She required a further pledge from me, whether or not I was called on to intervene, that I vow to take all steps available to me to highlight the plight of people in our situation. For every one case publicised by any high-profile euthanasia advocate, medical or otherwise, she wanted the public to be aware that there were ten, possibly a hundred, more of us coping with these emotional rollercoaster rides on a daily basis. Without expressing any misgivings, I promised to comply with these wishes as well. The following Monday was a bad day, Tuesday was worse, Wednesday was horrible and Thursday was the worst day of the whole ordeal. After an absolutely unbearable Friday, bedridden and having great difficulty communicating, Irene had a rare moment of lucidity late Friday evening. She rang the bell,


86

3/23/04

5:58 PM

Page 86


calling me to her bedside. She spoke to me in a clear and coherent manner, even though it was a struggle to get the words out. ‘I have made a decision,’ she said. ‘There will be three days in every year when you will both suffer the most pain as you remember these past three years, particularly Regan. My birthday, the day I die and Mother’s Day. To make it easier, I have decided to condense those to two. I would like to go on Mother’s Day. Remember your promise!’ Her lack of muscular control had left her unable to give me the look, but her eyes would always give her away. The possibility had suddenly become reality. Mother’s Day was just two days away. Without informing anyone else of her decision, I began a bedside vigil, haunted by the knowledge that my emotional strength and intestinal fortitude would be tested sometime in the next couple of days.


3/23/04

5:58 PM

Page 87

Chapter Nine S H E S AY S TO M E

R

egan and I would often ask Irene: ‘What are we going to do without you? How will we cope?’ She would tell us her wishes for our futures, that she wanted us both to: —bear no guilt as a result of her condition; —not listen to the myriad of ‘expert’ advisers, with their ‘you should have done this’ and ‘why didn’t you try that’; —realise that the World will go on, and that we would lead full and meaningful lives enriched by broadening experiences as a result of her condition, and to share those experiences with any who needed them; —take it one day at a time, and what will be, will be; —appreciate the wonders of life, and not be consumed by sorrow; —remember that you cannot possibly appreciate the miracle of life until you are faced with the undeniable fact of preparing to lose, or end it. She had noticed a change in our attitudes, particularly mine, and prayed that we would make further improvements


88

3/23/04

5:58 PM

Page 88


in those areas. She told us that she would be watching and guiding us. She said that she would be extremely disappointed if we didn’t share with others the accumulated compassion, concern, care, tenderness and love we had shown to her over this difficult time, through both our actions and conversations. She said we didn’t have to wait until she passed away to put that last request into action. She had also noticed that the word ‘love’ had become more prominent in our vocabulary, and that of so many others whom she had contact with. Every telephone conversation always now ended with ‘I love you’ and goodnight kisses were always accompanied by those three words. Friends and relatives always finished with: ‘Give her my love.’ Irene made us realise the power of love. The word itself can be consoling, uplifting, compassionate, rewarding and, at the right time and place, unconditionally inspiring. The active expression of love, even the simplest acts of kindness, are spiritually rewarding, albeit sometimes abstractly, but the experience of having love bestowed upon you is beyond description. Both Regan and I have made a real effort to live our lives according to Irene’s wishes.

Some things happen at the right time in your life. I attribute my discovery of a particular song – one that would come to mean so much to us – to divine intervention.


3/23/04

5:58 PM

Page 89

S H E S AY S T O M E

89

I heard the latter part of the song on an AM radio station in Melbourne which has the annoying habit of playing six or so songs in a row, then acknowledging the artists at the end of the bracket. I had to leave the car before these facts were announced, and, while I recognised the voice immediately as John Farnham, Australian music icon, I didn’t know the actual name of the song, let alone where to find it. A few days later, I was listening to the radio again while driving, when an Australian music buff was discussing Australian songs that never achieved the recognition they deserved. I couldn’t believe it when he mentioned my song, which I now know to be ‘She Says to Me’. It was written (lyrics and music) arranged and produced by Graeham Goble, and it is the second track on John Farnham’s ‘Uncovered’ CD, released in 1980. I nearly ran off the road as I scrambled for a pen and paper – while I reckon I’ve got a good memory, I couldn’t afford to let that song slip through the cracks. I made it a priority to secure a copy in the new year. A few days later on 31 December 2001, at about 10 pm, Irene was propped up in bed watching television. It was New Year’s Eve, and the celebrations around the country were airing on most stations. I was a bit bored so I decided I would fit a CD player to the car I was preparing for Regan as her belated Christmas present. She didn’t know this was to be her car yet, and Irene and I had planned to surprise her when she came home after the busy period in the hospitality industry ended. She worked at several venues in Ballarat in rural Victoria, so we all


90

3/23/04

5:58 PM

Page 90


decided she should make the most of those penalty-rate opportunities and we agreed to have our family Christmas together in early January. By about 11.45 that night I had the unit fitted and was checking the correct balances of the speaker system. With about a minute or two to spare, I downed tools and headed for Irene’s bedroom. As they counted down to midnight we kissed then hugged for what seemed to be a never-ending moment. The noise of the New Year welcome on television was subsiding, and with the commentator’s voice in the background we thanked our Maker –whatever he or she may be called – for the past year. We expressed gratitude for our daughter, our blessings, and all the wonderful people we had had the privilege to meet and know throughout the year. I returned to the garage to continue my work. I turned back before I got to the door realising I hadn’t actually tested the player. In the half-light coming from the passage I stumbled to the cupboard where I knew there would be some CDs. I have never been particularly interested in music; I didn’t really play tapes or CDs for my own pleasure and I had no idea what we owned but I knew where there was a pile of them. I had never actually purchased a CD, either for myself or as a gift. As I reached for one without looking, the pile fell over. No problem, I thought, I’d tidy them up later. I grabbed the first one off the top of the pile remaining – it didn’t matter what it was for my purpose of testing the player, as long as it produced a noise.


3/23/04

5:58 PM

Page 91


91

The radio was still playing in the car when I returned to it. I inserted the CD, pressed the selection button and it started playing perfectly through all four speakers. It was John Farnham singing ‘Matilda’. I then pressed ‘next’ to check the operation of the player itself. Imagine my shock when the second track began and it was ‘She Says to Me’. I listened to it in absolute awe three times. I removed it and, almost running, I grabbed our most portable CD player and headed for Irene’s room. I was thinking, ‘Divine intervention again! How long has that CD been sitting there, waiting for this significant moment to occur?’ I shook my head – I had no answer to that one. As I set up the player, I reminded her again about the song I had heard, the one that I intended to buy as soon as I could afford it. I had attempted to relate it to her previously but based on hearing it one and a half times only it was difficult to describe. As we listened together for the first time, on the first day of 2002, we were both overcome with emotion. After the third time, the tears were flowing. We both looked at each other through teary eyes and she asked, ‘I’m not that old, am I?’ I reached out for her hand and, as I grasped it, I said, ‘In my eyes you have always been and will always be that beautiful young girl I first saw in 1973. You were stunning and, no matter what happens, that is the way I will always choose to remember you.’ We listened to that song regularly for five more months. The lyrics and sentiments of the song epitomised Irene’s instructions to both Regan and me.


92

3/23/04

5:58 PM

Page 92


Irene asked me to keep it close at all times after her death, and to play it whenever I was feeling low or lacking motivation. ‘Just believe it, and it will get you through,’ she would say.

She Says to Me Such a little soul, but very old, she smiles up at me And I realise she’s very wise, it’s easy to see She says to me, ‘The world will survive We all will learn,’ she says to me. So I live and learn that my concern for all that I hear Isn’t worth all the pain it causes, year after year. She says to me, ‘Take it day by day And just let things be,’ she says to me. We are going along, hiding our sorrow Not singing a song, no thought for tomorrow Not saying a word, keeping it all to ourselves, ourselves. She is only just a little child, but she knows More than people care to realise and she shows More understanding than me Every time I look into her eyes I see All the promise of the paradise to be So I listen to what she says to me. We are going along, hiding our sorrow Not singing a song, no thought for tomorrow Not saying the word, keeping it all to ourselves. She says to me, ‘Take it day by day We all will learn,’ she says to me ‘If you let things be,’ she says to me. ©1979, Words & Music Pty Ltd


3/23/04

5:58 PM

Page 93


93

Later, when it was all over, I contacted Graeham Goble, finally speaking to him on 17 July 2002. His name may not ring a bell, but many people would know him as a foundation member of the ‘Little River Band’, and a major contributor to the creation of their music and that of so many other performers. He is arguably one of the most significant writers in contemporary Australian music. I asked for his permission to include his song in this book because of its particular significance to me, and he had no reluctance in giving me his approval and informed me of what other steps I would need to take so as not to breach copyright rules. I have had numerous discussions with Graeham since. Because of his personal and spiritual beliefs he could be considered as anti-euthanasia and asked only that I don’t present his magnificent work in any way that could be misconstrued as condoning or endorsing my actions. He makes no judgement on anyone involved in euthanasia or assisted suicide, as he considers it to be a provate matter that should not be interfered with by governments or ‘unconnected’ people. There is some irony in the fact that his inspiration for writing ‘She Says to Me’ was the sight of his innocent twoyear-old daughter, Elisha, some 23 years ago, a babe in arms with her whole life ahead of her. Somehow, through the magic of music, I interpreted those same words to relate to my wife about to face the end of hers.


3/23/04

5:58 PM

Page 94

Irene two days before she died, 10 May 2002

hapter Ten ONE THOUSAND AND S E V E N T Y - O N E D AY S

M

y worst nightmare began once Irene had made her decision to die on the Sunday of Mother’s Day. We didn’t do anything different on the Friday night, or for that matter most of Saturday. I administered the normal medication at the regular times. We began the day when she awoke at approximately 5 am with our daily affirmation, but this time with a difference. After my standard answer of ‘But not today,’ she added, ‘I’ll hang on until tomorrow because the pain and suffering for us all will be over by tomorrow night, won’t it?’ This was not a question so much as an understanding on her part that it would be over. I was the one with the misgivings about my ability to act; she didn’t doubt me for one minute. She had difficulty breathing, and it took quite a while to get her words out. She made a serious effort to smile as she made that statement. When I asked her for the first time, ‘Are you absolutely


96

3/23/04

5:58 PM

Page 96


sure?’ she again struggled to answer, but with a continual positive nod of her head, she virtually begged me. ‘Don’t let me down. You promised.’ I reminded her of our arrangement, that she had to be absolutely sure, that I still had to be convinced. Our arrangement required five positive confirmations. By Saturday afternoon Irene was a sorrowful sight, waif-like, unable to stand without my support. She insisted on maintaining as much independence as her rapidly deteriorating condition would allow. I spent most of the day sitting by her bedside, at her beck and call. She stopped me if I offered assistance before she asked. She would grip the overhead bar and chain that I had installed in her room – it was not unlike the hospital bars – and would endeavour to sit up by herself. It was painful for me to watch as she strained her tiny muscles to raise herself, but I dared not offer help until her attempts had failed. Then, and only then, would she allow me to sit her up. Once she was in a sitting position she would attempt to hang her legs off the side of the bed while holding onto the bar, but really she was not even capable of that. I removed her doona and gently pulled her legs off the bed so I could help her stand. Using both the overhead bar and the handrail on the ramp that I had installed to ease the effort of getting in and out of her bed, she got herself almost upright, and then permitted my assistance. I held my arms straight out with my wrists under her armpits and eased her down the ramp slowly, then I positioned myself behind her with my arms outstretched as before. She weighed less than


3/23/04

5:58 PM

Page 97

O N E T H O U S A N D A N D S E V E N T Y - O N E D AY S

97

30 kilograms. She firmly believed I was only helping but I took her full weight as she struggled to put one foot in front of the other on the 12-metre trip to the toilet. She clung to the handrails I had fitted in the passage, and as we neared the toilet I again supported her and resumed my position in front of her while she held on to the towel rail. After making sure she was comfortable and secure on the invalid aid over the toilet, I left her until she belled me again. On one occasion she allowed me to check her weight. Holding her, I weighed us both, returning to weigh myself after returning her to bed. She weighed in at just under 25 kilograms. I was never far away from her. I just moved out of sight in the passage until summoned, then repeated the procedure in reverse to get her back into bed. Fortunately this was a rare torture – only rare visits to the bathroom were required by now since she had no appetite at all, and it was only by forcing her to drink a complete balanced nutritional drink that she ingested anything at all. She would not permit me to carry her and absolutely refused to use a bedpan. She clung to the last vestiges of dignity. She dozed most of the day, mostly incoherent but with moments of lucidity. She sucked on a damp cloth as by now she was having great difficulty swallowing liquids – she would doze with her mouth open gasping for every breath, drying out her mouth and throat even more. At about 7.30 pm Saturday night I brought up again the subject of death the next day. I asked her again if she was sure – this was the second time – and she nodded in agreement.


98

3/23/04

5:58 PM

Page 98


A little after 8 pm I placed a morphine pill in her mouth and with great difficulty she was able to swallow it, washing it down with sips of water into which I had dissolved her sleeping medication. I waited for her to fall asleep at about 9 pm before I snuggled up on the couch bedside her bed, hoping to get some sleep myself. It had been a long and arduous day and I couldn’t see how Sunday would be any better. I was awoken at about 3 am by a strange noise. Irene had slumped to one side of the bed even though the back had been raised slightly and she was supported by several pillows. In her attempts to breathe she was uttering a deep guttural sound every time she exhaled. She stayed asleep while I rearranged her in a more upright position, then I tried to get to sleep again, without much success. I really hoped she would pass naturally – it was now Mother’s Day and if she died peacefully in her sleep she would not require my intervention and would have fulfilled her aim. At about 5.00 am I sat up and just looked at her. The light was on in the passage and it provided just enough illumination to see her clearly. For a fleeting moment I thought my prayers had been answered, but she was still breathing very weakly. Her pulse was barely detectable. After about half an hour she opened her eyes slowly, blinking, and signalled by opening her mouth that she was dry. I soaked another cloth in water and squeezed a few drops into her mouth, then placed the wet cloth in her mouth for her to suck on. I then went to the toilet myself and brushed my teeth.


3/23/04

5:58 PM

Page 99


99

When I returned her eyes were closed again, but as I moved closer they opened and she looked straight into my eyes. Again I said, ‘Are you sure?’, and she clearly nodded her approval. This was the third time. I gave her a morphine pill at the normal time, around 8 am. This time I opened her mouth, placed it at the back of her tongue and while I supported her neck and held her head back, I poured a small amount of the nutritional drink mixed with liquid morphine down her throat. While I held her jaws closed, I squeezed her nose, forcing her to swallow, sort of like the way I was shown to administer tablets to an animal. It worked – she gulped and swallowed it all. She was still breathing, albeit with some difficulty. I made her comfortable in a semi-upright position. As usual, she dozed off again after about 30 minutes. She looked so peaceful. With morphine-induced sleep she was quiet, much quieter than she had been most of the night. I sat and just looked at her for what seemed like hours. She and my daughter Regan had the same habit. When Regan was a child I would always know when she was pretending to be asleep because she would have her eyes closed tightly. When she was really asleep her eyes would be slightly open, just enough to expose a tiny bit of the white. On school mornings as a six, seven and eight year old, if I could see that small strip of white eye I would wake her very gently, generally with a nursery rhyme type of song, like a lullaby in reverse. If she was holding her eyes tightly closed, pretending, I would give her the Incey Wincey Spider treatment


100

3/23/04

5:58 PM

Page 100


up her arm, culminating in a gentle tickle under her armpit until she was forced to laugh, and thereby give her game away. As I watched Irene’s sunken, oversized bulbouslooking eyes, I could see that little line of white through her lashes. It brought back fond memories of Regan. Seeing the small line of white in Irene’s eyes, and recognising a slight smile on her wasted lips, I knew she was sleeping peacefully. As I just sat there watching her all the memories of those happier days came flooding back. Tears welled in my eyes as I contemplated the remote possibility that through some telepathic connection we may even be sharing the same dreams and memories. I found myself smiling at her contented appearance. I lowered the back of the bed and left her peacefully resting to attend to some much needed household duties. I monitored her in about ten-minute intervals. On one of these occasions I saw that she had moved, still sleeping comfortably she had assumed the foetal position. Another time I sat beside her – she was lying there like a large undernourished child. I reached out and held her right hand in my left and ran the fingers of my right hand slowly and caressingly through her very sparse hair. With my touch her eyes opened slightly, gazed up at me and the corners of her lips curled up as she attempted to intensify her smile. It was only a fleeting moment, but a bountiful experience nonetheless. Her eyes closed again and she continued to sleep. Where had my beautiful Irene gone? My mind flashed back and forth through all my memories. It was as if someone


3/23/04

5:58 PM

Page 101


101

had taken her away and replaced her with this wretched scrawny bag of bones. As I returned to the kitchen the true meaning of our song hit me with a jolt. I loaded the CD, selected the track, pressed repeat and listened to it over and over again. The bell rang about midday. I rushed to her side. ‘It’s Mother’s Day today, isn’t it?’ she asked with difficulty. ‘Yes, Darling,’ I answered. ‘I’m ready to go now – please.’ she replied. That was the fourth time. My moment of truth had arrived. With one more positive response she would sanction my impending actions. I was overcome by a sense of distance; I felt like an observer, an overseer, someone watching Ross Anderson go through the motions. That remoteness allowed me to make the final necessary preparations. I broke four of her sleeping pills in quarters, half-filled a small glass with orange juice mixed with morphine liquid and walked towards her room. She was a pitiful sight – pale, emaciated, her last few hairs forming wispy curls spreading from her head to form a sort of halo on the pillow. I asked for her affirmation one last time, and she made an unmistakeably positive attempt despite her weakness and nodded her assent. ‘You’re going to have to help me,’ I said. ‘I need you to swallow these itty-bitty tablets.’ She blinked twice, signalling okay. I knew the answer was inevitable but I asked her one


102

3/23/04

5:58 PM

Page 102


more time, ‘Are you absolutely sure?’ She summoned all her strength to give me the look, and I could feel her saying, ‘For God’s sake, how many times do I have to tell you?’ Then she opened her mouth. I grabbed the remote control and raised the back of the bed to about 45 degrees, pushed her lower jaw down and virtually threw the broken pills as far back in her mouth as I could. Somehow she managed to take enough liquid to swallow them all, she then smiled and indicated she had discomfort in her lower back area. I lowered the bed to allow me to rub the small of her back. I waited until about 2 pm. She was sound asleep and my energy was incredibly low. Coffee time again I looked in to check on her again in the hope that the next steps may not be necessary. She was nearly prone and had again moved into the foetal position, just like a baby. But she was still breathing, obviously experiencing difficulty, but she looked so peaceful that my course of action was now resolved. With the same sense of detachment, I casually prepared the next steps. I had two syringes, both without needles: one with a capacity of 3 millilitres used for the administration of the liquid ‘breakthrough’ pain medication, the other with a capacity of 20 millilitres used to refill the ink cartridges of my inkjet printers. I removed the outer covering of four of her strongest morphine tablets. This interfered with the sustained release ability of the analgesic. I made a paste with the crushed tablets and the liquid morphine used for ‘breakthrough’ relief


3/23/04

5:58 PM

Page 103


103

because of the faster acting effect of liquid. I then diluted the paste with enough liquid morphine to fill the small syringe. Before filling it I prepared the next move. I gathered all the pain-killing drugs I could find plus any others that I knew not to mix well and to increase sedation. After removing the outer covering of all such tablets, I placed them into the coffee grinder, emptied the contents of some capsules on top and ground the lot to a powder. Again I made a paste using the balance of the morphine liquid then diluted it with tequila. When we were drinking, Irene loved tequila – a shot glass down the hatch, a bite on a lemon then a lick of salt from the back of her left hand, the traditional method of consumption – and for some reason I had a sample bottle. I thought she would like that. With the small syringe full, a small cup of the other mixture and the empty large syringe, I headed for her room. I noticed she was sound asleep with her eyes closed fully. My hopes raised that I may not have to carry out steps two and three. I knew she was past pretending so I placed my equipment on the dressing table and went to see. Unfortunately she was still breathing, only just, with a very weak pulse when I checked one of her carotid arteries (the arteries on either side of the neck that carry the blood to and from the heart to the brain). Stage two was required after all. I moved her limp body over on her back and raised the bed to about 45 degrees. Taking the small syringe, I opened her mouth and injected it down her throat, very slowly. As I introduced it, she swallowed it all. I then moved the couch


104

3/23/04

5:58 PM

Page 104


closer to her bed, on the side opposite the ramp. I again lowered her bed and arranged a bean bag on the couch to allow me to lie next to her. With my right hand rubbing the small of her back and with both her little hands in my left, I snuggled my head against her shoulder. Through sheer physical and mental exhaustion, I nodded off. I awoke with a jolt and looked at the clock. Twenty minutes had passed in an instant, and it was now nearly 3 pm. I looked at my partner of twenty-seven years lying there beside me. Her head had tilted to the right, her eyes were wide open but she wasn’t breathing. I checked for a pulse in both her wrist and carotid artery and when none was obvious, I began to carry out stage three. One part of me was happy, most of me was relieved, and the robot in me continued. I filled the large syringe and slowly injected a full 20 millilitres of the mixture down the back of her mouth. She obviously didn’t swallow, but having no muscular control, the entire 20 millilitres slowly went down her throat. I watched for some time, as if I was an observer. Then it was as if I returned to my body. My first feeling was happiness and I was proud of the fact that I had been strong enough to fulfil her wishes and honour my promises. Then I felt relief, not only for her but for myself and all the others who had been affected by this. ‘What have I done?’ did not cross my mind at all. That joyful feeling lasted only milliseconds before the reality hit me that I would never see her, hold her, smell her,


105

feel her or converse with her again after today. I held both of her hands in mine and cried until I ran out of tears. I lowered the bed so that she was at about 20 degrees, pulled the doona up and crossed her arms across her chest. I tried unsuccessfully several times to close her eyes, then walked slowly to the kitchen to convince myself my actions were appropriate. I turned on the CD player; ‘Uncovered’ was still there. I selected track two, pressed the play and repeat buttons and listened to ‘She Says to Me’ continuously for about 45 minutes. It had been one thousand and seventy-one days since Irene received her death sentence. The medical profession had given her six months.

By around 4 pm on Mother’s Day 2002, I had spoken to my mother, contacted our physician’s office, called the palliative care nurses, rung the undertaker to arrange Irene’s cremation, and had rung her sister and cousin Millie who had both played a large and supportive role in our lives over the difficult times. Lastly, I called my daughter and suggested she make her way home as soon as possible. I didn’t tell her then that her mother had died. I didn’t want her driving from Ballarat consumed with grief and guilt at not being there for the end. I lied when I told her that Irene was close to the end. I later told her of my actions, but on that day I couldn’t risk the chance of losing Regan as a


106

3/23/04

5:58 PM

Page 106


result of her race to get there in time. I left her with the impression that her mother was still alive. I demanded that she not take any risks to get there faster. As I waited for the arrival of Regan and other family and friends to assist and console me, I found myself staring at Irene’s corpse. She looked so peaceful and that image of her, without any pain or suffering, left me in no doubt that I had acted correctly. It was over, I had done it. I had kept my promise and I would now have to suffer the consequences of my actions. With no witnesses, it would be my admission alone that would determine the path the authorities would take. In accordance with her wishes I was prepared to make a full admission in an active attempt to share our thoughts and place our decisions and my actions on the table for public discussion.

Irene’s wishes were that she be cremated and that it would be private. She didn’t want a service. ‘Don’t waste money on my disposal arrangements,’ she would say. ‘Have a party to celebrate my life rather than a wake to mourn my passing.’ I arranged the cheapest possible cremation after which, with her ashes on display, we had a gathering of friends and relatives. About seventy people turned up. It was as happy an occasion as it could have been. I spoke and Regan sang two tribute songs: ‘You Are the Wind Beneath My Wings’, a hit


107

song by both Colleen Hewitt in Australia and Bette Midler worldwide. Those words epitomised Regan’s relationship with her mother. Regan also sang a song she wrote herself, ‘It’s Time to Say Goodbye’. My words were simple: ‘Irene, I know your spirit is watching over us and I hope I have complied with your wishes. I spent more time on this earth with you than I did without. I love you and I will never forget our years together.’


3/23/04

5:58 PM

Page 108

hapter Eleven THE LAST PROMISE

A

m I a cold-blooded killer? I don’t believe so. Was there malice in my actions? Absolutely not. There certainly was what they call aforethought – a considerable amount of planning and a small amount of preparation went into the successful completion of my actions. Do I look back with regret? Yes! But not because of any inherent guilt over my decision or what I did. I look back regretting all the things I possibly should have done, all the things I could have done, things that might have allowed Irene a longer and better quality existence. During countless sleepless hours, both before and since, I have racked my brain to see if there was anything I missed – anything at all that may have made a difference. We were an ordinary but extraordinarily happy couple who faced the biggest issues of life and death. While these last years have undoubtedly been the most difficult years of my life, the emotional highs and minor victories – and often just wit-


3/23/04

5:58 PM

Page 109

THE LAST PROMISE

109

nessing Irene’s amazing strength and tenacity – have always been cause enough for celebration. I know I am a better person as a result of what I went through. Was it worth the price? Did the universe (Allah, Buddha, God, Jesus, Mohammed or whatever you wish to call him) spend thirty-odd years preparing us for was undoubtedly our, and most certainly my, greatest test? All I know is that if I could retain the lessons I learned over the last three years of her life and still have my wife with me, I would consider myself to be an extremely fortunate person. Accepting and understanding the inevitability of our mortality, getting on with life and living each day as though time is limited gives a different appreciation of the wonders of human existence. That very appreciation leads to a new paradigm for life. It is overstating the obvious to consider myself proeuthanasia, but I’m ‘pro’ with a slight difference. I prefer the term ‘assisted suicide’ and to me that is the big difference. In my mind Irene committed suicide – I simply provided the physical wherewithal. In other words, I assisted her. It surely was her life, it most definitely was her suffering and without the slightest doubt it was her decision. The biggest question to be answered is whether she had the right to make that decision? All I want for people who are put in my impossible position is a responsible policy on medically assisted suicide. Those of us who have carried out ‘the act’ are the definitive world experts on the life and death of our loved ones. We all know – we have an inner sense that tells us that it’s time, and we all, including the sufferer, agree that this procedure should be available through approved medical facilities.


110

3/23/04

5:58 PM

Page 110


We were permitted to order our dog’s execution because we owned him. We carried out the recommended course of action and killed him painlessly and absolutely simply because our advisers, experts in their field, recommended that while the pain was probably manageable with drugs, his quality of life would be so poor that ‘the decent thing to do’ was to put him to sleep. When asked why Irene didn’t simply prepare and take an overdose herself, the answer I give is always the same. To take her own life would have forever robbed us, her family, of an undeterminable amount of pleasurable time. Loving, caring time. To be able to do it herself, she would have had to go much earlier. Even during her worst moments everyone who knew her closely doted on her, lavishing on her the kind of affection usually reserved for children, helpless babe in arms children. No-one pitied Irene. Until perhaps the very last week, her presence was incredible. You could feel her in a room. Her ability to communicate at a higher level with her carers, myself included, was astounding. We all thought how smart we were when we pre-empted her wishes; we would congratulate each other. But Irene’s reply when I drew attention to this cleverness of mine was, ‘What a lot of bullshit! I just send out the message and wait for someone to get what I need. What took you so long?’ Worldwide there are no doubt hundreds of these stories that don’t make the news but there have been several cases that I feel are worthy of my comment. Nancy Crick, a woman of seventy-something, sought


3/23/04

5:58 PM

Page 111

THE LAST PROMISE

111

court approval to allow another person to assist her to end her life. Whatever possessed her to take this action I can’t imagine, but when the court refused her, lots of people jumped on the bandwagon. The right-to-lifers got good mileage out of it and Philip Nitschke (Australia’s Dr Death) came out on her side. And given her self-admitted suffering of incurable terminal cancer that was ravaging through her body, why shouldn’t she have been allowed to pass away with dignity. I would have agreed. It turned into a circus when Mrs Crick, not wanting to legally implicate her assistant, suggested that there should be twenty or more people in the house on the day the deed was done. How could the authorities then find the one guilty party? It got worse when she began selling front door keys to her home. By implication, all of those hundreds of key owners could be suspects because of their ease of access to her home, making it impossible to find the culprit. I was repelled by this case. After all, she was mobile, had dexterity – at least enough to conduct television interviews. If she was serious, she didn’t need help. She ultimately did do it herself and when an autopsy was carried out she was found to be completely cancer free. She just wanted to end her life. While I personally agree with her right to that decision, the debate over her rights and the sympathy vote she milked from the public on the false premise that she was going to die anyway set the cause for medically assisted suicide in this country back a few steps. Her theatrics and those of her supporters were an insult to genuine sufferers.


112

3/23/04

5:58 PM

Page 112


In my opinion, the Medically Assisted Suicide Club should have the strictest membership criteria. Nancy Crick would not have been a member because she would not have been able to prove she was even worthy of nomination, let alone full membership. But perhaps her application may have created a real need for counselling – medical or psychological treatment may well have solved her attention-seeking behaviour, and with help she may have rearranged her priorities. We’ll never know. Sandi Williamson is another interesting case. An attractive and intelligent American woman living in Australia, she had been diagnosed with motor neurone disease, a degenerative condition that takes away muscle function. It is terminal. She made it public that she wished to end her life and suggested that while this may be premature, she had to commit to it now before she lost her physical capacity to do it. I followed the coverage closely. An issue that was not discussed was how Sandi might have reacted to the possibility of life after loss of mobility, remembering that, under the law, she had to act while she was physically capable of committing suicide on her own. Would her intelligence have wanted to exist beyond her physical abilities? We’ll never know. She attempted suicide, underestimated the dosage and ended up in a coma for some considerable time before passing away. Her sisters had arrived from America to care for her during her last days and had the privilege of taking her comatose body home to care for her. While medical science continued to prolong her life, she was obviously fed and hydrated intravenously. Given the circumstances, I ask, ‘Why?’ Were there


3/23/04

5:58 PM

Page 113

THE LAST PROMISE

113

not even the slightest compassionate thoughts? But there were no legal avenues to finish off what Sandi herself had begun. Given her situation, how long would her intelligence have wanted to live, if she had been given an alternative to the necessity of performing the act physically herself? That choice would have given her some freedom and dignity, some ownership of her existence. She may well have wanted to be a contributing member of our social community for some considerable time after her muscular degeneration rendered her physically helpless. Again, we’ll never know. Philip Nitschke’s approach incenses me. He is Australia’s most prominent pro-euthanasia advocate and has invented a simple device to end your life. This device can be used by the least capable person with limited dexterity, and the components are simple, easily obtainable consumer products. Anyone can manufacture one of these devices and they promise a painless, passive end. I have a problem with this. One reporter commented that once the technology was distributed, we could expect classes on how to build a suicide machine to be established over the country. That is not doing our cause any good at all. I have heard the argument that drugs are difficult to procure, thereby necessitating the existence of the death machine. But this machine still doesn’t remove the need for some assistance. The worst possible outcome in any of these cases and one which gave me countless hours of distress, is the chance of failure. Sandi Williamson’s failed attempt resulted in incredible pain and anguish for her family. The only sure way to avert failure is to medically supervise the procedure.


114

3/23/04

5:58 PM

Page 114


Doctor, with all respect, I think I am a little bit closer to the reality of suffering than you. From a personal perspective, I’ve lived it 24 hours a day, seven days a week. Are you prepared to stand before the legal system and admit to illegally over-sedating a patient that resulted in his or her subsequent death? Does it happen? How is it arranged? Which is the easiest hospital? How do you ask them? A host of similar questions are asked in the waiting rooms of oncology wards. You soon realise that you are on your own with medically assisted suicide. There’s plenty of second-hand information, but Irene and I were part of a community of hopeful people where no-one had committed the act yet. But there was a lot of advice available on what someone they knew had done. Some methods were bizarre; some used household materials including various cleaning substances. Some were so incredible they are not worth open discussion. Bear in mind that deep within, all the cancer sufferers I spoke to knew they were going to die, yet they were not prepared to discuss whatever plans they had made to ease or finalise the pain and suffering. At one stage we had legal euthanasia in the Northern Territory. The criteria for selection into the program was very strict. Several terminally ill patients availed themself of this facility. The moral and ethical debate raged from the day the NT legislation was mooted until eventually the federal government, running scared and fearful of the negative views of the minority do-gooding right-to-lifers in an election year, introduced further legislation to overturn the Territory’s laws. It has been well researched, and the great majority of


3/23/04

5:58 PM

Page 115

THE LAST PROMISE

115

Australians would prefer clearer and more transparent legislated guidelines to cover the extremely difficult permission for clinical administration of the final blow. Given the polls on the subject, I cannot understand how a political party seeking a mandate to govern this country doesn’t harness the positives this issue has to offer. The NSW Labor government had taken the lead and set up a working party to investigate the medicinal values of marijuana. The establishment of a similar body, or at the very least an electoral promise to establish examination of what the average Australian thinks and the appropriate safeguards needed, could, just possibly, be a winner. We are not winning the war against terminal illnesses, but we can win the peace on medically assisted suicide. If a person has been diagnosed with a terminal disease and has had that diagnosis confirmed beyond doubt, the general consensus would be that the person is dying. Should this person wish to terminate their life at a time of their determination, surely clinical psychiatrists could be employed to determine whether or not this person is sane and intellectually aware of the finality of their decision. If one branch of medicine determines beyond doubt that the patient will die, and another branch of recognised mainstream medicine ascertains beyond reasonable doubt that the patient has a clear understanding of his or her mortality, why shouldn’t he or she have control over their destiny? Suffering is a very personal thing and we all suffer differently. Some of us can control extreme physical pain but are emotional wimps; others of us can cope with whatever life


116

3/23/04

5:58 PM

Page 116


throws at us but are afraid of inoculation needles. I have come out of this experience the better for it. My emotions have expanded to reach all extremes of intelligence. I have been the observer, the close friend and the relative and I am now a regular blood donor, my fear of needles has diminished and I now donate at least every twelve weeks. A vegetative state with no communicative ability signifies, to me, an absolute loss of quality of life. Loss of ambulatory skills is one issue, but a loss of the ability to communicate is another entirely. My fellow associate members of the Medically Assisted Suicide Club know exactly what that means and can see when intellectual life ceases and dignity is lost. I do not know Arthur Maxwell, the man who was tried for murder in Melbourne in 2003, because he helped his wife to die. In so many ways we shared experiences, in particular our many moments of helplessness. We know what each other has been through. Arthur Maxwell responded to his wife’s plight and aided her to end her life when she had had enough. She had terminal inoperable cancer. Like myself, he probably hoped his moment would never come. If he erred in any way it was in not making advance contingency plans like Irene and I did from virtually day one. Arthur’s case became news headlines because he was charged with murder. He called funeral directors after he’d done the act. They, in turn, called the police. A very private act, a decision made between man and wife, became a very public matter. Arthur could not have wished it to be that way. Irene and I had the forethought to plan the end. We hoped, prayed and did everything to beat the odds, and even


3/23/04

5:58 PM

Page 117

THE LAST PROMISE

117

though we were told so many times that inoperable, incurable pancreatic carcinoma was a short cut to the morgue, we believed that while there was valuable life there was always hope. I’m sure the Maxwells did all they could to prolong Mrs Maxwell’s life and ease the final symptoms as the inevitable results become painfully obvious. I have no need or desire to meet or discuss mutual experiences with Arthur. That would only reduce us both to tears and bring back memories we would both rather forget. If I were ever to meet him, however, I would have several questions for him. Could he have not found a more humane method? Most would consider asphyxiation by way of a plastic bag full of helium not the kindest of methods. Did he have no other options available to him? Were his wife’s pleas for help so completely overpowering that he overreacted? Was she suffering so much? A positive answer to only one of those questions would be sufficient reason for me to applaud Arthur’s action. While this will give you no personal satisfaction, Arthur, I understand. Arthur and I are both members of a dreadful and very exclusive club, and it is not one I would encourage people to join. I am sure that there are many more members of the club than people realise. Arthur’s situation happened well before mine, but I am heartened by the emotional address made by the judge to the jury and court audience. Justice Coldrey said the tragic case was one in which ‘justice may be tempered with mercy’. His voice was breaking with emotion as told Arthur that ‘none of


118

3/23/04

5:58 PM

Page 118


us would wish to face the dilemma with which you were confronted.’ That is the definition of veniality.

I contemplated the many methods I could employ to comply with Irene’s last request: ‘Make a noise,’ she said. ‘Let them know. Don’t go through all this without getting the message across.’ This is the loudest voice I could raise and the highest soapbox I could find. I hope someone is listening. I tried to find a way to get the message across without actually admitting to my part in full, but I have realised that would only weaken the argument. I learnt early in life that people only take you seriously when you place something at risk and the most I could risk was my liberty. I’d already fulfilled the first two promises and if I didn’t explain how and why, who would care? What was I risking anyway? The experiences of the previous four years had left me exhausted, financially insolvent and emotionally bankrupt. A successful resolution to my final promise would at least put me at peace with myself and give me a real sense of fulfilment. Will this book change the way things stand? I hope so, and I’d like to think it might hasten change. Do I believe I can bring about a change in the laws? No, not directly, but the more the topic is debated, the sooner commonsense will prevail.


3/23/04

5:58 PM

Page 119

THE LAST PROMISE

119

We are blessed with the highest intellect of all the species. We have the faculties to receive and comprehend ideas, with the capacity for higher knowledge and the ability to understand. Yet with all that, we still treat the lesser species with more humanity than we do our own kind.

As I write this final section, I am currently under investigation for murder. Yes, murder! Irene and I agreed that our situation would be made public in some way, and I was always prepared for the fact that I may have face the legal implications of what I did. I do not believe there exits a charge of ‘assisted suicide’ and, given the longstanding premeditation of my act, manslaughter is out of the question. Irene’s death certainly was not accidental. The police have treated me very fairly and non-judgementally at all times. If I was to be judged by the law of the land, I could well be found guilty. If I was to be judged in the court of public opinion, I like to think I would be judged not guilty of murder – that I am just an ordinary man who put an end to his wife’s suffering. Judge me if you will, but first ask yourself what you would have done in my situation.


3/23/04

5:58 PM

Page 120

rom diagnosis to demise

From diagnosis to demise All one thousand and seventy-one days. That journey changed so many lives And touched us all in wondrous ways. My father was the first to hear the news. He realised then our future would depend On the path that he would choose. When they said you might not see Christmas It came as quite a shock. When they said five months, he told you five years So you wouldn’t set your clock. At that time who could foresee We’d be blessed with you for nearly three.


3/23/04

5:58 PM

Page 121

And once we formed and signed our pact And understood your wishes We prayed and prayed he’d never have to act If it ever got so bad that you were forced to ask Would he have the strength, Would he be equal to the task? History now knows the answer She is peacefully at rest. And when she asked he thought of her And with much love and such compassion He surely passed his test. She was an inspiration, ever courageous and so wise All the days of her journey From diagnosis to demise. In fondest memory of my dearest mother Regan Anderson 20 /12 /2002


3/23/04

5:58 PM

Page 122

cknowledgements Words alone cannot convey the importance of our wonderful daughter, Regan, played in our journey. Regan’s rock-steady support, patience and encouragement on all levels elevated Irene’s sense of determination. This led to her resolve that Regan would be spared as much as possible the obvious signs of her distress and discomfort. I hadn’t shared the original prognosis with Regan either so she fully believed in the ‘five years’ story. Regan was with us all the way and, as I make these admissions, she is fully supportive of me fulfilling my promises to her mother. This period in our lives was made infinitely easier thanks to innumerable people who, for a variety of reasons, cannot be named. In particular, the health professionals who shared their knowledge and made themselves available: you know who they are and I thank each and every one of you. Your genuine kindness, care and emotional input, individually and cumulatively, contributed to making this journey more tolerable and, incredibly, enjoyable at times. After the events of this story, there has been one particular avenue of support that has helped me to deal with my grief and to cope on a day-to-day basis. While not necessarily agreeing with my actions, my first wife has provided me with the love and deep understanding that has allowed me to go forward with my life. Despite the years of physical and geographic distance, the sincere emotional bond has never been broken, thank you. I must express my gratitude to the Australian Labor Government of 1984 led by then Prime Minister Robert J (Bob) Hawke. They had the forethought and political strength to introduce the original Medicare; the Australian tax levy-funded public health care system. This, in conjunction with our social security scheme, must surely stand as the world benchmark for national public welfare. I doubt residents of any other country could tell this story. While I paid a higher levy than many who earned less, I never begrudged my contribution. I had had a rather left wing upbringing and appreciated the labor government’s policy that in the area of health care ‘the


3/23/04

5:58 PM

Page 123

ACKNOWLEDGEMENTS

123

State should provide’. I never subscribed to private health insurance, but then we were never going to need it, were we? Every one-on-one consultation with our general practitioner, surgeons, oncologists and all other medical staff was provided at no cost. Diagnostic and surgical procedures, all hospitalisation – in the main, single-bed ward, at the worst three-bed – in-hospital treatment, medication, ultrasound and X-rays were all available under Medicare. Palliative care including disabled aids, even extremely costly appliances such as ‘ripple mattresses’ and ambulances if required were all made available to us at no cost thanks to our wonderful Australian public health system. Through social welfare, a livable income support was made available to allow me to be Irene’s full-time carer when the time came and all at-home medications were heavily subsidised. Alternate therapists, suppliers and vendors of alternative medicines and health care products are encouraged to discount their services and products to those in genuine need. Obviously the providers of the ‘miracle cures’ do not subscribe to these principles but in the main everyone was sympathetic to our situation. Any person critical of the Australian health and welfare systems, and surprisingly there are many of them; should look at themselves first. By understanding the obvious pressures and limitations, reassessing your expectations, being humble, asking questions, showing patience and above all openly showing and expressing overt gratitude for even the smallest mercies will allow every Australian to access what I believe to be the best health care on this planet. Over the term of a long and debilitating illness, many inspirational and uplifting people come into your life. Most we never met but their presence has had long lasting effects. I wish to thank the following ‘special people’ who made our journey more tolerable and certainly more enlightened. Dr Phillip McGraw, who altered our life perspectives often and showed us how to see things ‘as they are’. Gary Zukav, who showed us that every moment in life is a moment of decision. Dr John Gray, for making us realise that it was OK to be different, and that those differences could become the foundation of a wonderful relationship.


124

3/23/04

5:58 PM

Page 124


Marianne Williamson, whose appreciation of the miracles of life were an inspiration to us both. Dr Wayne. Dyer, who continually through his teachings showed us that happiness is a choice we make for ourselves. He showed us how to transform our life choices and recognise the joys of adversity. Carolyn Myss, for teaching us to go inside ourselves in search of remedies to our problems, a process that helped us both. Her principles prolonged Irene’s quality of life. Iyanla Vanzant, who explained the negative effect of ego on all of life’s decisions. Maya Angelou, her deep insights into life made us establish our true values and strive to be the best ‘us’ we could be. And finally, the most special of the special people, Oprah Winfrey. The above people and the myriad of other guests on her show continued to provide us with an encyclopedia of relationship tools and a new set of rules to live by. Even Oprah’s ‘bad news’ stories were inspirational. Once Irene discovered you, Oprah, you became mandatory viewing. If we went out, we would record and watch later. For nearly three years I don’t think we missed a show. Thank you Oprah and all your staff at Harpo Productions for bringing all this into our homes in living colour five times a week on free-to-air television. Without you, our lives would have been so much poorer. High on my thank you list must be the wonderful people at Allen and Unwin. Sue Hines and her team have been genuinely supportive of my ‘mission’ and I have felt comfortable with them. My own personal editor, Andrea McNamara – without your continued support and encouragement this may not have happened at all and without your skills it definitely would not read as good as this. You believed I could do it, thank you. And finally, I must thank Irene.

If you would like to engage in the debate about medically assisted suicide, visit www.yesmas.com or email Ross at [email protected]

The Quality of Mercy: One Brave Couple's Struggle for a Dignified Death

The Quality of Mercy

The Quality of Mercy