My Story
Big Weekend
July 13 1996
The Guardian
September 9 1996
Copyright: ©West Australian Newspapers
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You don't say
why me if
you win Lotto
MINE is a story of good fortune which I write in the hope it may bring
hope to others. Here are the facts:
I cannot use my right eye, so I wear a patch; I cannot use
my left leg and am wheelchair bound; I cannot use many of the muscles in
my face so I cannot smile or talk properly; I cannot use half the muscles
of my throat so I choke and splutter a lot.
So far, so bad. But I am alive and what I can do far outweighs the cannots.
I can play and laugh with my children, Alana (10) and Rory
(7); And my wife Chris; I can gossip and have a few drinks with friends;
I can take myself out in an electric wheelchair; I can swim . . . well
sort of; I can dress myself, slowly; I can eat most good food; I can still
do fulfilling work at a computer. I could go on, but here is my story.
It all began in December 1993 when I started having episodes of double
vision. By January I had to turn my head deliberately to see things and
started to feel a tightness round the corner of my mouth. Investigations
using sophisticated MRI (magnetic resonance imaging) revealed a spot on
my brainstem -- the area bridging the spinal chord and main part of the
brain and the site of hundreds of nerve pathways as well as the root of
vital nerves controlling heartbeat and lung movement.
Neurologists thought at first I had multiple sclerosis. The alternative
was an infiltrating glioma of the pons, in other words a brainstem
tumour or inoperable killer. I prayed for MS. But tests and observation
over the two months from the first signs ruled that out. A neurosurgeon
pronounced his certainty of a tumour in June and said he could not operate
or even do a biopsy because that part of the head is "tiger country". Another
doctor, some months later, said surgeons would have to take my head off
to get at the beast.
Feeling weaker day by day, finding it scary to drive and unable to
work 12 hours a day as night editor of The West Australian I was
starting to feel defeated. I was having acupuncture, drinking herbal juices,
meditating and altering my diet, all in the hope of the reversal the medical
experts had virtually ruled out. I took the family to my native Queensland
in October for what I considered my farewell. Medical opinion was I had
18 months to two years left before the tumour strangled the nerves governing
heartbeat. Radiotherapy was not advised. My neurologist ruled it possibly
unsafe and probably ineffective. But a young English palliative care physician
said to go for it.
"You are young with a young family. You'll regret not trying everything
you can," he told me. So I did it against my instincts and possibly in
the wrong frame of mind. Thirty times I went to a Wembley clinic where
I lay on a cold metal table with a mask moulded to the shape of my face
strapped on, while a roving red electronic eye in a big machine fried me
in front and behind the ears for 10 minutes.
All it seemed to do was make me feel worn out, grotty and defeated.
Christmas 1994 and New Year 1995 came and went with no joy. I could barely
walk or talk. Everything got on my nerves, my hearing was going, my salivary
glands had been cooked making all food taste like iron filings.
The first four months of 1995 were a descent into hell. Most days I
lay on my bed trying to read or watch TV and hoping no one would visit.
But they did. Many people, friends and family -- Mum and Dad flew over
from Queensland and stayed six months.
I was being tended by Silver Chain nurses and showered regularly by
them. My wife Chris and many friends were pushing me along Cottesloe beach
in a wheelchair. They got fitter. I just got anxious about the future.
Then all the reading and thinking I'd been doing about death and dying
seemed to click. It wasn't a blinding revelation like Paul on the road
to Damascus, but it was a breakthrough. All the friendship and nurturing
-- mothers from my children's school, Iona, and from the Claremont Tennis
Club, and from work were cooking meals for us -- all the wise words from
Bernie Siegel, Deepak Chopra and Ian Gawler in particular, and all the
"new" therapies reiki, reflexology, meditation and positive visualisation
were blending and lifting my spirits. Combined with the fact that the negative
effects of radiotherapy were wearing off I started to look forward to the
day instead of wishing I was dead and no longer a burden.
I started trying to push myself around in the wheelchair. Mates took
me to see the Eagles (Perth's top football team) and I became a regular
in the excellent Club Bay wheelchair area at Subiaco Oval, jeering Dermot
Brereton along with all the other wheelies. The movies proved relatively
easy to get to with friends' help and I started seeing the funny side of
things again.
In May, while Chris was in Sydney at a wedding I had not even contemplated
going to because I thought I'd be dead, I was composing, in my head, an
oration I wanted read by a friend at my funeral. I'd be doing this for
months with great gravity, but now all I could think of was jokes and one-liners:
"Dear friends, if you're hearing this I must be dead and as a result have
access to hitherto forbidden information like the meaning of life. However,
here are next week's Lotto numbers instead."
I thought it was funny. What I needed to do was write it. As a regular
Thursday patient at the Cottage Hospice in Shenton Park I had access to
a PC. At first I avoided it because it reminded me of what I'd lost and
presumed I could never have again. But slowly I taught myself Windows and
instead of writing funeral orations, I played games, drew pictures and
toyed with the configuration until I got into trouble enough to find my
errors and fix them. In miniature it was like my old work life which involved
problem solving.
Slowly it dawned that this was life and I was alive. All
the cliches about taking it a day at a time and never knowing unless you
had a go were correct. The best of all were these sayings gleaned from
books: "Life is what happens when you're making other plans", and "You
never say why me when you win Lotto".
In late May I visited a faith healer whose methods frankly got under my
skin. I had an open mind but this experience was hocus-pocus. However .
. . two weeks after seeing her my left hand which had not moved since February
began to twitch --- a tiny amount, but a little. For the first time since
I was diagnosed something actually improved. By the end of June I could
bend one finger.
The next step I'd been aching for was to have a PC by my bed. I was
getting sick of books and TV. We bought one with an inbuilt fax/modem and
soon I was annoying my old workmates who I had been unable to communicate
with since November because I was too deaf and slurred for the phone.
Life was looking much better than it had only two months earlier. Friends
were delighted at my spirits and we had more invitations out; even my GP
(family doctor) was slightly bemused by what was now stability with mild
improvement rather than deterioration. Connection to the Internet followed
the PC and my ability to communicate exploded as exponentially as the Net
itself.
By the end of August I had subscribed to a mailing list called BRAINTMR
on which 700 people worldwide shared information and support about brain
tumours. Many had tumours, many were supportive, anxious family members,
some were techno-literate doctors. I made an e-mail pen pal of a Washington
DC man with the same tumour type as mine. In three months I learnt a lot,
but pontine gliomas are rare in adults and tragically more common in children.
From other parts of the Net I learnt there were emerging hopes for
children with pontine gliomas but precious little for adults. Still what
I had learned allowed me a feeling of control and knowledge about my body
and more precisely my condition that helps face reality.
By September I felt so good I wanted to work again. I was idly surfing
the Net looking for information on WA politicians Carmen Lawrence and Richard
Court when what I found so amused me I wrote an article and e-mailed it
to editor Paul Murray.
While I was in Melbourne for the AFL Grand Final (the biggest football
match in the country) -- taken there by two good mates who helped my zest
for life -- The West Australian published my story. I wrote another,
then another and by November considered myself a regular in the computer
section.
The stability and an actual strengthening of previously weak limbs
led me to an MRI in November to check what was going in with the tumour.
To my great surprise there had been minor shrinkage. Doctors put it down
to radiotherapy, New Ager acquaintances put it down to reiki, reflexology
and meditation. I put it down to everything in combination . . . a harmony
of lifegiving forces.
Most of all I put it down to family, particularly Chris, and friends
who would not allow me to give up. Maybe at 40 we were too young to know
any better than to live life. The good-news MRI was a breakthrough in more
ways than one. I rode there on my own and then (from Sir Charles Gairdner
Hospital) to The West Australian for my first day of work in a year.
I was able to because of a trait not usually associated with journalists
. . . kindness.
The staff of The West Australian had a whiparound to buy me
an electric scooter-wheelchair. I could now ride to the shops, take the
kids to school, go to work, the movies and more without troubling people
for help.
This independence capped what turned out to be a rich year. At the
beginning I gave myself four miserable months at best. At the end I could
see a year ahead, which is all I dared do. Learning to deal with terminal
illness requires a drastic revision, a return to almost childhood thinking.
And that means a day at a time, even 10 minutes at a time when the going
gets rough.
It also means that you have to regard life as a terminal illness to
try to negate the effects of your condition, to make it less important
and to make each day more meaningful. At the moment I'm stable with a little
deterioration in the left side of the face over the past six months. I
don't know how long I've got and in a way it is no longer a preoccupation.
Getting the most out of every situation good and bad is what it's all about.
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Back
to My Brain
intances put it down to
reiki, reflexology and meditation. I put it down to
everything in combination . . . a harmony of lifegiving
forces.
Most of all I put it down to family, particularly Chris,
and friends who would not allow me to give up. Maybe at
40 we were too young to know any better than to live
life. The good-news MRI was a breakthrough in more ways
than one. I rode there on my own and then (from Sir
Charles Gairdner Hospital) to
The West Australian for
my first day of work in a year. I was able to because of
a trait not usually associated with journalists . .
. kindness.
The staff of
The West Australian had a whiparound
to buy me an electric scooter-wheelchair. I could now
ride to the shops, take the kids to school, go to work,
the movies and more without troubling people for help.
This independence capped what turned out to be a rich
year. At the beginning I gave myself four miserable
months at best. At the end I could see a year ahead,
which is all I dared do. Learning to deal with terminal
illness requires a drastic revision, a return to almost
childhood thinking. And that means a day at a time, even
10 minutes at a time when the going gets rough.
It also means that you have to regard life as a terminal
illness to try to negate the effects of your condition,
to make it less important and to make each day more
meaningful. At the moment I'm stable with a little
deterioration in the left side of the face over the past
six months. I don't know how long I've got and in a way
it is no longer a preoccupation. Getting the most out of
every situation good and bad is what it's all
about.