http://newpath.blog.co.uk/

So here it is

Tue, 22 Sep 2009 13:42:04 +0200

The anonymous writer from Melbourne - at the other end of the world.
I write positive thoughts
Not because I believe that all will agree
But because I truly believe
I have seen the depths
And I have experienced the highs
Inside the many layers of humanity are some pretty special ones.
Time and effort have given me many reasons to be positive.
Every time I challenge a learner
Every time I make someone laugh
I know
Often it is but a lift for another with pressures I do not know
But many of us together can make a difference.
Making a difference - Isn't that what it is all about?
So why don't we all do what we can do?
And why don't we all recognise the good we do?
Work, relationships - the little things
We all know that we carry the good spirit
Sleep well tonight

Comments

Reach out

Tue, 22 Sep 2009 13:26:53 +0200

My father taught me that if I would make one other person happy each day then I would sleep contented. Wise Man.
Forgiveness is hard but it is so rewarding.
Sometimes I take the easy path.
Sometimes I take on a challenge.

Comments

49

Wed, 25 Feb 2009 07:57:37 +0100

Another Birthday - 49!
"You'll be dead before you turn 21!" Dr.....(1976)

Its not a bad feeling to reflect on these decades of wonderful life, of friendships and of growth.

We cannot control life.
We can control attitude.

Comments

Life today

Mon, 22 Dec 2008 13:10:50 +0100

Friendship gives warmth
Body heals through warmth
Open to others
Listening to others
Having the right to choose
Having the responsibility to choose
Change following action
Experience informing action
Pushing through pain
Learning through pain
Accepting my gifts
Utilising my gifts
Respecting time
Making the most of time
Community with family
Connected through family
Part of the world
Honoring the world
Observing nature
Wondering at nature
Experiencing feeling
Growing through feeling
Understanding discernment
Reflective discernment
We are all alive
Blessed are those who are alive
And those who have gone before us.

Comments

Thank you

Thu, 18 Dec 2008 11:35:23 +0100

To all the people who have responded to my story - I say thanks.
If I have helped anyone, please know that you have buoyed me.
How would I summarise my life goals?
To be:
Welcoming
Discerning
Courageous
Not original, but I know they have led me to happiness.

Comments

Life After Leukaemia

Mon, 26 May 2008 06:56:19 +0200

I have published an edited version of my autobiography on this site.
The book itself is no longer widely available.

It is the story of my successful battle with Acute Lymphoblastic Leukaemia which began 32 years ago when I was 16 years old.

I hope it may help someone.

If you know of anyone who may need to read this story, please make them aware of this site.

Comments

Final Chapter

Tue, 14 Aug 2007 05:15:06 +0200

HOW DOES IT FEEL?

I would like to describe how it has felt over these last 31 years.
When I left secondary school, I decided that there was no reason why anyone but my closest friends should know about my illness.
It was the typical story. No one else apart from some lecturers
needed to know. I did not want attention, nor sympathy, nor endless questions. There was a normal life ahead.
I was just like everybody else.

If I told friends that I would be missing the next week of University, then I knew that they would cover my tracks and get me the relevant notes. I was certain that it
was going to be far easier to pass my tertiary course than it had been to succeed in my H.S.C. year. As it turned out I was right.
I progressed through my education without having to miss any years. I achieved my Bachelor of Science (Education) from the University of Melbourne in 1980 and took up my first teaching post in 1981.

The signs in my University days, had vanished, or were covered. I had a fresh growth of light brown curly hair which I grew eventually to shoulder length. The miniscule divots
in my lower back left by the bone marrow biopsies were rarely revealed, although I sometimes walked very gingerly on the day of the latest test. The veins in my right elbow had collapsed, and adhesive strips could regularly be seen on the inside of my left elbow. I had already had hundreds of injections, but still felt very sorry for diabetics because of their dependence on the needle. A couple of times I was asked if I had donated blood that day. It was not to the Red Cross, but I could still answer "Yes" to that question.

In all honesty, I was a little fearful of people's reaction to hearing of my illness. I hoped that it wouldn't jeopardise my employment, and saw no reason why it should.

Getting my life insured was another matter.
My parents had taken out a small policy in my name at birth,
and the ever-vigilant life insurance salesman saw a definite need
for greater coverage. He came around to our Hawthorn flat one
evening. I wasn't overly responsive at first, but his obviously rehearsed
speel seemed to make some sense.
"You've got to think of Anne, and how she would cope with
a mortgage, and kids ..."
We might as well hear him out, I thought.
"The policy turns into quite a money spinner after a few years,
but you should start now, or the dividends will be much smaller."
As the explanation continued, more and more we were sold.

Not on the deluxe package that he so strongly recommended,
but on a smaller, cheaper version. After the follow-up hard sell
failed, he relaxed, content with his less-than-perfect sale. He
removed contracts from his briefcase, and I sat marvelling at
the power of his type to burrow into your conscience.
We all sipped coffee as he filled in my form. Name, address,
date of birth, etc. down to the last section. He was just about
to conclude the deal with my signature, when he asked;
"You haven't suffered from any serious illness, have you?"
It was a confident question.
"Well,...Yes I have!" I responded.
"Leukaemia."
His face dropped. He was thrown.
"I ...Umm .., I don't know what effect this has on the policy.
I'll have to get back to you after I check."
Suddenly, he was keen to get home.
"I'm sure this doesn't change anything!"
He noted that I had been in remission for some time, and
was perfectly healthy, then left.

Some time later, I was notified that I had to report to the
company's city offices for a thorough medical examination before
the policy I had chosen could commence. This sounded reasonable
to me, and I knew that I was fit and healthy so I was not concerned.
The doctor gave me a clean bill of health, and congratulated
me on my success. He had checked for any sign of the disease,
but could find none. I was happy that all the preliminaries were
over, but was still not totally convinced that I needed life
insurance.
Weeks passed before I received notification of my altered policy.
The document had an added clause. I was fully covered, so
long as I didn't die from leukaemia!
I was both shocked and annoyed. I thought it disgusting that
a company such as this, which makes a handsome profit from
every policy, could not take such a relatively minor risk. More
than seven years had passed since I was first diagnosed.
My letter was brief.
It read: "No.Thanks."

I haven't fully answered the question I posed at the beginning
of the chapter.
How does it feel?
I feel fortunate to have survived the disease that took so many
other lives around the time of my diagnosis, and I feel privileged
to help others. There is a dominating feeling of gratitude, and
I feel proud. My spirituality has grown enormously since that time. It has been moulded by the Christian Brothers and the Jesuits.
Last year, I was fortunate enough to travel on a pilgrimage for St. Ignatius of Loyola. One cannot help but be inspired by men such as St. Ignatius and St. Francis Xavier.
I thank God.

The experience has changed my life and my perspectives. I know that teaching is my ministry and that my family is a true gift. Anne and I will celebrate 25 tremendous years of marriage in December this year.
Was it fate when we met at Rainbow Beach in Queensland so long ago? Or was someone looking over my shoulder again?

As a teenager, I was reserved and my self-image was low. At times, it could not have been lower.
Now, I have a healthy self-belief. I am a confident speaker and advocate for the values of my heritage.
I remain fit and active, and my past has left no signs.

I was born into a most loving and supportive family who must
take a great deal of the credit for my success, from my
grandparents, to my parents, and brothers and sisters.
We remain a tight-knit group.
A special thanks to you Mum and Dad.
My parents are fit and well, and have celebrated over 50 years of marriage.
They support me still, in so many ways.
My course to recovery was designed and carried out by a highly skilled specialist, who had faith in his work.

I married into a special family, and now have one of my own. There are few greater gifts than the gift of children. Just one smile can outweigh all of the troubled times. My three beautiful daughters have grown into wonderful ladies.

Good health has given me the opportunity to participate in sports like cricket, and football, and a chance to teach others. I have taught Year 12 Biology for 24 years and I have coached Schoolboy Football for 25 years. (The highlight being 4 consecutive premierships with Xavier College 1st XVIII).
I gained my Masters of Science in 2000.
Now I am a Deputy Headmaster in this fine Jesuit School.
Life’s journey was not uphill for long.

It is easy to forget that I was ever seriously ill.
I am not embarrassed by any reference to it at all, but I do cringe at many of the memories that may surface. I have had the privilege to know many fine people who have since conquered A.L.L..

You cannot go through life worrying about contracting cancer.
If you're the unlucky one, then you are the one with the fight.
Nothing will change that. It becomes a matter of doing everything
within your power to give yourself the best chance of recovery.
We all have reserves of strength to call upon. Don't underestimate yourself.
Resilience.
Persistence.
The power of the God-given Human Spirit.
There will be better times and they take on new meaning.

Life is too short as it is.

Comments

Chapter 9

Tue, 14 Aug 2007 03:06:30 +0200

A NEW DECADE

After ten years, I needed to see my specialist to say thanks.
I hadn't been to Dr Whiteside's private clinic before, and he seemed a little put out to see me. He would have perused his appointment book beforehand, and been concerned about the reason for my visit.
"Hello Wayne. Come inside."
I had been sitting in the tiny waiting room, flicking through
a two-year-old women's magazine. There was no opportunity to
answer, I simply followed.
He had not changed much in the time since our last meeting,
perhaps he was a little greyer. It made me wonder what sort
of person chooses to work with the very sick; amongst the despair
and depression. Then I thought about the successes. Not only
the major ones like myself, but those who experience an important improvement in the quality of their life. Doctors could derive
a great deal of satisfaction from this.
I sat upright in a chair, opposite a desk littered with documents.
"What can I do for you?"
I could tell that he was intrigued, and I was eager to tell him
my news.
"Nothing really, I just came in to thank you for everything ..."
I was nervous.
I had always found it difficult to relate freely with a man of
such importance. Many of the occasions on which I had previously
talked with him had involved crucial dialogue like: "How did the
test results turn out?"
Much of the nervousness came from my anticipation of the
answers to such questions. "That's very nice. Thank you."
"Just hop up on the table ...and give me a look at you."
I couldn't believe it.

The thanks had been registered, but he still wanted to examine
me. Wouldn't it have been tragic if he had found something wrong
with me, when I had only been paying a social visit?
On the table I followed the well-rehearsed routine, as he listened
to my chest, then felt my glands and spleen. I felt rnuch better
when he assured me that all was well. I hadn't gone there
expecting anything to be amiss, but I was worried nevertheless.
"It's been ten years now, almost to the day, since you first
diagnosed my illness, and I just wanted to thank you for all that
you have done for me."

He leaned back in the reclining leather chair. I told him about the major role he had played in my psychological battle, and he seemed uneasy about accepting too much credit for that.
"Sorry Wayne, I didn't say that we would cure you."
"Yes, you did!" "I will never forget the moment. It's what kept me going."
"No sorry Wayne. You must have mistaken me." He said with a wry smile. "I could not have suggested a cure in those days."
This went backwards and forwards until I was forced to accept that I may have misheard him.

I came away knowing that my effort had been worthwhile. I felt good because I had wanted for so long to thank him for saving my life. I know he said what he said. Thank God he did.

What had my absolute trust in Dr Whiteside given me?
Apart from relatively minor interruption to studies for a few
years, and the rigours of treatment, I have led a perfectly normal
life. I am active, and can play any sport. The teaching profession is satisfying and enjoyable, and most importantly, I have been blessed with
a family of my own. My faith in the doctor has been completely
justified.

Where to from that point?
I knew that I couldn't just walk away from all that had
happened. The option was there to live my own life, and forget
the bad times. It was tempting.
As I left the offices it became obvious to me that I had to
continue my interest in other patients, and wherever possible,
do more. There was no escaping the memory of how I felt when
I was told that there was no one that I could talk to who had
been through the disease. It was devastating.
Now the responsibility was mine.
Initially, my visits to the hospital were all by appointment. In
the early days there was minimal paper work to be completed,
but later I found that the forms became tedious and the queues
long.
In the I980s, when I needed to attend a clinic, or maybe just
visit a friend, I would offer my time to talk to new patients in
the leukaemia ward. All of them seemed grateful for the opportunity
to meet me.

One cold, miserable day, I decided to drive up to the Alfred
Hospital. It stands only five minutes from the school where I taught, and as I watched
the rear of the car in front, I wondered why, on this day, I felt
compelled to visit this place.
The new parking area was in full use, and it made me remember
the trouble my mother had finding space in previous
years. Sometimes you were lucky enough to be in the right place
at the right time, but more often than not, there would be a
long walk through Fawkner Park ahead of us. And the car lacked
air-conditioning, so after hours baking in the hot sun, it seemed
like an oven for much of the trip home. This made me feel more
queasy and Mum's day even more unpleasant.
I walked up towards the new entrance, and couldn't help but
notice the variety of people walking in either direction.
There were three young nurses, chatting and giggling their way
to the park for lunch. I thought of the nurses that were so
important to me, and the duties that they performed. Apart from
all of the obvious things that nurses do, their cheeriness is so
important, especially in wards where depression can be catching.
The confidence of position could be seen in the stride of two
young doctors who entered the hospital. An elderly lady with
a bandaged ankle and a walking stick looked up as they hurried
past. She had spent a great deal of time at this place. I could
see it in her eyes.

Inside to the right was the florist that used to be run by a
lady who became very friendly with my mother. She always had
a kind word for both of us. I remember elbowing my mother
when she got too deep in conversation, because I was keen to
get home before the vomiting began.
She was not there.
To the left was the cafeteria, and I could see that that had
changed also. I thought I recognised one of the ladies serving.
She had straight blonde hair which had crept over her pencilled
eyebrows, and a quite obvious excess of make-up. Yes, although
she had aged a little, I could tell it was her. She would not
remember me.
I couldn't help it. That sickly feeling in my stomach had arisen
again. It was just the environment, and the memories. Knowing
that it was only in my mind didn't help though, because I felt
genuinely sick.
Just to make sure, I asked about the placement of the ward
for leukaemia patients, and sure enough it had been moved. When
I walked from the lift I was confronted with change. Nothing
seemed the same. There were no familiar faces, and even the
layout of the ward looked different.
"Can I help you?"
She wore the uniform of a sister, and closely cropped hair.
"Yes, my name is Wayne Reed," I knew that would probably
mean nothing to her, "and I am an ex-patient."
There was still a sense of confusion behind her bright smile.
"I was just wondering whether there were any new patients
here, who would like to talk to me."
"Yes, there certainly are."
As we walked towards some single rooms, she asked excitedly
about my history. There was that understanding there, that
physical evidence of success could do more for the morale of
patients than any books or promises.

I felt nervous, but I wanted to help in any way that I could.
Their diseases or their situations could be quite different to mine,
but I came to understand that there was still a very special
appreciation.
"This is Stephen. He's been in here before, but he's only been
sick for about six months."
"Stephen, this is Wayne. He had leukaemia eight years ago."
"Actually, it's just over nine years now."
I had to correct her. Who could forget dates like those?
I looked into his sunken eyes and saw the results of intensive
treatment. He was seventeen years old, and he had the same
form of the disease that I had had. I knew that I could be especially
helpful here.
We talked quietly for almost an hour, as he asked many
questions about what happened with my recovery, and I tried
to instill in him the confidence that had given me such strength.
"What drugs did they use?"
"How long did it take for your counts to come up?"
"How much chemo. did you have?"
"Butterflies are great, aren't they. They don't hurt much at
all."
And so on.
I asked questions about his family, friends, and schooling. I
developed an impression that he had what it takes to weather
the storm.
I saw in him so much of me at that age, and trapped within
that illness. He had lost the majority of his hair, and he looked
anaemic and thin. But I knew that this was a phase that all
must go through to some degree, as I had. The intravenous drip
was in place, and his forearms were speckled with bruising. He
was bored with the limitations, and frustrated with the treatment,
but very pleased to see me.

I spoke to another man in his fifties, who also had many
questions to ask, but I didn't mind at all. He had the myeloid
form, and seemed to be a hardened case. The sister said that,
throughout his periods of hospitalisation, he remained cheery
and positive. He would stir up the nurses, and when mobile, visit
others in the ward, dragging his three-wheeled drip stand behind
him. As we sat in the television room, he reminded me of the
first time I tried to have a shower while the I.V. drip was still
in place.
It was a disaster.
I couldn't remove my gown over the tubing, and as soon as
I had the water at the right temperature, the butterfly needle
dislodged slightly. I was restricted to using just my left hand.
I knew that the needle was about to come out, as the soggy
tape gave little support. I made a desperate bid to wash off the
few suds that I had created, then dashed back to my bed and
rang the buzzer. There remained a trail of puddles from the
shower to the bed.
My quest for independence had failed, and I was left with a
bed wash.

We spoke of the bone marrow transplants that were being
trialled, and agreed that it seemed unbelievable that an effective
registry of bone marrow types had not been set up.
How could the transplant program be effective if it was so
difficult to locate a suitable donor? No doubt it came down to
money again. But surely it would have to be a priority with health
administrators to support this life-saving program. If this type
of treatment were to help leukaemia patients and others, then
it must be rated as important.
In this era of organ transplants, such resources are essential.
I wonder how many people have given serious consideration
to donating their organs in the event of them no longer needing
them? It's definitely a hard decision. But the overriding principle
is that by making such a commitment, you have the opportunity
to save lives. This makes the issue clearcut for me.
They can have my organs when I'm finished with them. But
I'm not sure that they will want them.

I am also astounded by the number of people who don't give
blood.
I've had so many needles that the thought of another doesn't
worry me. It also shouldn't worry many people at all. But again,
it would seem that I cannot help in this area, which is annoying
for me.
During my time of illness, I benefited regularly from the
generosity of so many other people who made the effort to donate
some of their blood. People probably do not understand that
one patient may require massive quantities after an accident or during their treatment.
Many, many packets of A+ flowed into my veins. The drugs
would devastate my blood, then reinforcements would be called
upon. I wish I could thank the donors individually.

When I left the hospital, I knew that my trip had been most
worthwhile. I felt really good inside.
While in there I had met two doctors who were working in
this field, and was pleased to hear that they both knew of me,
and could quote my case to patients. They seemed young and
caring, and I remember at the time hoping that they did not
develop into doctors like my doomsday friend, who was too quick
to predict my demise.
How often could I visit patients at the hospital?

Comments

Chapter 8

Thu, 09 Aug 2007 11:33:33 +0200

MOVING ON: REMISSION

It had been a difficult year. 1976 had passed and with it
probably went the worst of the battle. I was fairly happy with
my performance on the final examination papers, and I knew
that I had until March to enjoy freedom from study, and the
associated pressures. More importantly, the treatment was
definitely working. I had suffered no real setback at all.
One day, covered in the gleam of baby oil, I was dozing by
the pool. Under a warm sun, I felt wholly relaxed. This was my idea of a perfect way to spend a lazy afternoon. Flashing into my mind came the words of one
of my doctors.
"The chemotherapy works differently with different patients,"
he began, obviously trying not to be too blunt.
"It tends to halt the disease for around two to three years
...,"thoughtful pause, "...then you'll have a relapse."
I dreaded the response to my next question.
"What happens after that?"
Looking at this man, I could see a rigid professionalism. I noticed
the black hair comb tucked into his shirt pocket, and then I
wondered why he was so sure of himself.

"We can use other drugs to get you back, but they too will
lose their effect. Sooner or later, we run out of drugs that will
work"
I didn't need to ask what the next stage would be.

Who should I believe, Dr Whiteside, or a relative newcomer?
An expert, or a beginner who would probably complete his
allocated time in this specialist area, and then move on to another?
There seemed to be no value in being defeatist.
There never is.
I had believed Dr Whiteside from the beginning ...

Long before, I had been instructed in the art of meditation
- not by an expensive professional or a manual, but by a fellow
patient who had experimented with the various techniques. At
first I had been sceptical, but soon found that it was a great
experience. It was easy to slip into the routine again, as I baked
in the sun.

"Toes first," I told myself, forgetting that I never really felt the circulation through such a small region.
"Feet then." The concentration was all important. I became
so relaxed that the throbbing pulse in my right foot could be
felt to the exclusion of all other parts of my body.

"Cure" was the silent chant as my thoughts focused on my
foot. Then, coaxed by the rhythmic pounding, they moved slowly
in turn to each part of my body. The entire exercise usually took
only half an hour, but it inspired a feeling of well-being which
often led to sleep.

How can you gauge the part such a crudely performed technique played in my recovery?
I cannot fully answer this question. But I do believe that we
hold within our brains powers and abilities which are not tapped
in normal situations. We use so little of them on a regular basis.
There are many who would say that the most effective way
to combat the cancers of man is to release the full energies of
the mind, and direct them in a way similar to that described
above. I would tend to think that they are getting close to the
truth, but there is no reason not to accept a little chemotherapy,
should it be offered. After all, it really does no harm to try all the
alternatives.

I briefly met a young lady during a hospital visit, who had
decided that the possible disadvantages of chemotherapy were
too great a risk. She explained her future in the following way.
"I don't want to go through the effects ... the terrible effects
of the drugs."
She had straight dark hair, and a pale thin face. Her arms
were like matchsticks protruding from a striped dress that hung
loosely on her fragile frame.
"The only chance 1 have, is to put my faith in God."
There was a faint uncertainty in her voice, as if she was trying
to convince herself. It sounded like a well-rehearsed response.
Maybe the belief was not her own. 1 knew to be careful with
what I said, and the way I said it.
"When did you decide this?"
"Soon after I was diagnosed, I was given a couple of weeks
to decide. That was eight months ago."
She then described her visits to a famous faith healer, visiting
Melbourne, who was guiding God's healing powers into her
tortured body. I could see that if her faith was strong, then there
was a definite chance that she could win her fight. But there
was that logical thought that kept rising to the surface, that
it was quite irresponsible to eliminate medical treatment from
her list of options. It may not have made any difference but
I will never know.
She died late in 1977.

I had passed my Higher School Certificate with grades above
that required to gain entry to most tertiary courses. I was slightly
disappointed that I received 79 per cent for English, missing out
on an A by 1per cent. That was because I still refused to accept
that I was different. Later on, the achievement really sank in.

It was a very satisfying result.
The next problem was course selection. I really did not know
what I wanted to do. We had all been preoccupied with my illness,
and had given little thought to my future career. When the subject
was broached, I found it difficult to decide.
The form read Bachelor of Science Education at the University
of Melbourne. Obviously I had not selected a highly specific course,
as I was in the middle of intensive treatment when the form was submitted. I simply
wanted to try further studies at Melbourne where Linda was,
in the subjects I found easiest to cope with - the sciences.
I had succeeded.
I was looking forward to University, and all of the new
experiences that it would offer.

The flash of the camera signalled the end of what had been
a long enrolment process. Everything seemed so foreign to me,
as I suppose it did to all of the first-year students filling the
hall. I had only just recently revealed my newly grown hair to
public life, and this identification photograph would serve as a
reminder of my crewcut days, throughout the next four years
of study.

Blondish and curly was the new growth, but its passage was
slow. Like all others I suppose, I would inspect my scalp at least twice daily, and was disappointed for what seemed to be an eternity. The colour was an unexpected
bonus. I hoped that it would persist, but of course it didn't.
My treatment had not been completed, so I arranged an
interview with the Head of the Department to inform him of
my commitments. We both recognised the importance of keeping
up with lecture notes, so I knew that I must make new friends
relatively quickly. I was going to miss a fair amount of time.
Still the trauma of CROPs persisted into the second and third
years. The nervous waits for the colourful drugs, always with
assurances that all was progressing well, were followed by the
days of sickness swallowing Stemetil or Maxalon in the hope that
they would stem the tides of nausea. Through it all my mother
was by my side.

One Friday morning, I awoke to the news that Dr Wrennall
had been delayed. I was in the middle of a CROP, and his daily
visits to our home meant more sickness. A medical bag containing
my file had been stolen from his car the previous evening.
Disappointed with their drugless haul, the thieves had cast the
bag into Port Phillip Bay.

A watery end for my medical records.

One other day he completely forgot to arrive. It had probably
been a misunderstanding between the doctors, and it gave rise
to panic at home. The drugs would only have the desired effect
if taken in the correct sequence, and at the prescribed times,
we thought. A phone call quickly remedied the problem, although
I felt disappointed that I had been robbed of my day off. I
understood that I needed the injection, but I yearned for a respite
from the perpetual sickness. My tolerance of the CROP was
lessening each time, but I knew that I had to see them through.
To get better, I had to endure months of sickness.

I believe that the timing of injections is fairly crucial. Recently,
I read that if there was too much time between treatments then
previously obtained control over the disease may be lost. Also,
if nine days in between CROPs were given to rest and recovery,
then the drug could be given in maximum dosage, and achieve
better results. That meant that the ideal pattern was one each
two weeks, so long as the patient could tolerate the onslaught.

Without knowing it, I was developing a deep interest in the
biological sciences. I had been given time to reflect on life and
living things, and now wanted to know more. The experience
of illness had heightened my awareness of my body, and its
functioning, and I designed my University course to achieve a
wide perspective of life.

Now there was only the occasional bout of treatment, or the
early morning bone marrow biopsy, to remind me that I was
not yet like everybody else. The social life at University was
fantastic, as people found their groups of friends and adopted
the carefree attitude typical of this age bracket.

Consolidation it was termed, as I had achieved a state of
remission well before this time. But still each time I had a blood
test, or a bone marrow, my heart would be in my mouth awaiting
the results. When the time arrived for my ninth CROP I was
becoming weary of the battle. I knew only too well what would
follow in the five days ahead, and mentally I was approaching a danger zone.
There was no guarantee forthcoming that any of the CROPs
would be my last, and I desperately needed to sight an end. This
is the mental pain of treatment.

An end to the ritual. The five-day trauma which extended its
fear into the preceding days, creating a terror that became
increasingly hard to overcome.
I could see in the distant future a healthy life free from the
torment of leukaemia, but it seemed further and further away.
I wondered how much more 1 could take. My volatile ernotions
exploded during June of 1978.

I rose from the family room suite to clear an ache which was
developing in my left calf, and a slight sensation of pins and
needles along my inner forearm. The hours before had seen violent
vomiting as wicked as I had known, leaving my body wet and
trembling. I felt disgusting.
"What's wrong?" inquired Dale, who noticed the distraught look on my face.
"I don't know," I replied.
"I feel weird."
My chest was heaving.
The strength of the pins and needles was increasing
dramatically, as 1circled the billiard table and tried to take control
of my breathing. 1 had no idea that I was hyperventilating, and
even if 1 had known, 1 would not have realised that my body’s
response to the difficulty was actually compounding the problem.
"Get Mum or Dad," I pleaded to Dale, as I drew deep prolonged
breaths. Hunched over the table 1started to get really scared.
"I can't take any more of this, it's getting worse, you'd better
get the doctor ...No, get an ambulance!"
I was in real trouble. My immediate reaction was to think that
something was terribly wrong. That my time had come. I had
crumpled to the floor when Dad arrived a few seconds later with
the answer.
A paper bag was held over my mouth, and within a dozen
inhalations, the effects began to subside.
"I can't take any more of this!" I repeated.
"I just can't take any more drugs. I've had enough."
I sank deeply into a chair and almost into defeat. Only after
attention from my parents, did I recover my lost
composure. So much inner tension had been released. I was
thankful that Dad had known the paper bag routine.
But I was almost convinced that another bout of treatment
was out of the question.

As had been my custom throughout the previous couple of
CROPs, my silent but pleading prayer was that this would be
my last. This time I had had to draw upon the last of my dwindling
resolve to find sufficient to face the days ahead. I'm not sure
how much fight was still left in me, but subconsciously I was
preparing for the worst.
Wednesday was still clinic day, and my fate was still squarely
in the hands of the experts. Physically I had responded well,
but mentally I was about to crack, and I was going to tell the
doctors. Following the F.B.E. and a substantial wait, the interview
began.

"We're really happy with the way the treatment has gone."
I was used to this type of non-committal statement, and wanted
to interject with my strong feelings on the matter - A long break
from the treatment, or better still, an end. The doctor was talking
as he examined my spleen with forceful depressions of his fingers.
"We decided, at our meeting yesterday, that you've had enough
of the CROPs ... and that you need a period of recovery while
we decide upon a maintenance course for you."

The feeling was special.
I wondered whether the man was a mind reader or my prayers
had been answered. I knew that I could get through the new treatment. The hardest
part was over, and I savoured success.

A bone marrow transplant was discussed in a closed meeting
between the medical team, my parents, and Linda. I didn't realise
the importance of this occasion, but I am glad that I was not
there. The decision that had to be made would have enormous
implications for my fight, but it was only a preliminary talk.
The procedure involved the destroying of all of my marrow,
and replacing it with Linda's, which had been shown to be
sufficiently compatible. The concept seemed to have merit, but
there were a number of problems.
Firstly, the operation had to be performed in London, England;
or Seattle in the U.S.A. In these centres they had trialled this
type of transplant; it had not been attempted in Australia.
This would mean a costly and traumatic trip because Marsden Hospital in London seemed to be the doctor's preference. It sounded exciting to me, until I
was told of the appalling success rate.
The chances of a cure resulting, that is that remission would
persist indefinitely, were only one in sixteen. That means that
there was a fIfteen in sixteen chance that even after having the
operation, the leukaemia would return. And because it was such
a new type of treatment, there was a 40 per cent chance that
rejection would occur and I would die.

I have been told that they sat there in disbelief. Here was a
doctor giving them odds on my recovery, and looking for a decision
in the near future.

Research had shown that the transplant had even less potential
for success, should it not be carried out while I was in my first
remission; and it was well known by the doctors that most people
in those days slipped out of their first remission after a relatively
short period of time.

So here was this amazing dilemma for my parents and Linda.
Should we throw all on the line and risk a trip to London to
attempt to achieve a permanent cure? Or should we recognise
that the conventional treatment had worked well to date with
me, and hope that it could rid me of the disease forever?
What a position to be in as a parent?

Now that I am a parent, I can fully appreciate the position
they were in. If I went to London and the operation failed, they
would probably have felt guilty for the rest of their lives. And
if they refused that opportunity and I was eventually beaten
by the disease, they would wonder if the transplant may have
worked.

The choice to stay home and persist has proved successful
so the correct decision was made. But it certainly caused
enormous anguish.

I believe that the doctors were in two minds themselves. They
could not know whether it was the correct rnove or not. How
were they to know that I was going to succeed on the conventional
program?

It would have been a scary experience for Linda, who would
have had much of her marrow removed under a general
anaesthetic. Not necessarily a dangerous operation for her,
because the marrow taken out would be replaced by her healthy
system in a very short period of time; but it still would have
been both inconvenient, and frightening. Linda, of course, was
quite prepared to do whatever she could to help.

Bone marrow transplants are far more successful today, and
they can be carried out in a variety of places, including the Alfred
Hospital. So they have proven a more viable.

I lay back in bed, scared to move.
It was Autumn 1979.
The bulk of three pillows had created a pain at the base of
my skull, but I was more afraid of the injuries left by the bone
marrow harvest that I was awakening from.
"Could I please have a drink?"
The dryness of my throat made the request barely audible to
the Sister. She continued past.
I had to feel the tender regions that had been speared. The
tops of my pelvis, that had been used often before, and my
sternum, punctured for the first time. All were covered in adhesive
bandage. I saw the Sister through the corner of my eye, and
called through the doorway. This time she came towards me.
"You've finally woken up! How are you feeling?"
"A bit sore. Any chance of a cool drink?"
"Sure. I'll just be a minute."
I threw the spare pillows onto the side dresser, and rolled
onto one side.
This sort of hospital stay was one that I didn't really mind.
Instead of chemicals being injected into my body, I was there
to have marrow removed. There were no signs of cancerous cells
in my body, so I had had a large quantity of my bone marrow
taken out through many small insertions, to be frozen for future
use if required. It was such a worthy idea that I didn't mind
the pain and discomfort. To have a healthy supply of my own,
that could be transplanted back, was an encouraging thought.
University had been going well. The people were great and I
was finding the subjects I was doing, on the whole, really
interesting. A couple of days in hospital was not going to affect
my studies significantly.

It seemed that my future was in teaching; especially in the
biology area. I had not planned this to happen, but I didn't mind
at all.

The course of maintenance chosen was daily Mercaptopurine
tablets, with a weekly dose of Methotrexate. It was a popular
decision with me. I thought that tablets were definitely preferable
to regular injections, which some other patients had to endure.
I always had confidence in the drugs that were prescribed,
thinking naively that they were the latest formulations. Recently
I read about a man who died from leukaemia in the mid 1960s,
and was shocked to see the names of some of the drugs that
were used on me.
I'm glad I didn't know this at the time.
The Methotrexate tablets were particularly strong. Years later,
I heard of a strategy used with some sufferers, where a lethal
dose of this drug was administered to kill all of the dangerous
cells. Then an antidote was given to prevent death. I don't think
that this method was too successful.
For the next three years, I took the Methotrexate and
Mercaptopurine tablets with a glass of water at bedtime. Both
were tasteless, and produced no detectable side effects. It became
such a part of my routine that I would gulp down the five tablets
with just one mouthful of water. They would be packed carefully
in gladwrap, should I not be sleeping at home that
night.

One probable side effect of the treatment was infertility. The
drugs destroyed sperm cells, and the doctors were not confident
that their production would ever really recover. I was told of
this early on, but I didn't give it a second thought until my father
reminded me in November 1982, when Anne and I decided to
marry. I had totally forgotten about it.

At the beginning, I considered that having children was not that important to me, because
infertility seemed a minor disorder compared to those which
I had imagined. Those drugs had scared me into some amazing
nightmares, not often, but they were strong.

But when I began to think of marriage, I could see how much
kids would mean to me. My father's reminder came as quite
a shock I drove to Anne's home, trying to accept the worst
possibility, and wondering how she would take the bad news.
Anne had already come to accept that I had been through
a serious illness, with regular assurances from me that it had
been defeated. When I told her that we may never have children,
the disappointment within became quite evident. I could
understand the way she felt. Anne said that it did not matter.
The union was far more important than the children.
She is a wonderful lady.

Later, I went to the doctor, to find out one way or the other.
"I should know the results about 2 o'clock ... if you could ring
then?"
I nodded in response to his question, and hurried off to school.
It was my second year of teaching at Christian Brothers' College,
St Kilda

At one minute past two, I rang the hospital only to be
disappointed by word of a delay. The doctor had again warned
me against raising my hopes too high, but I couldn't help it. My
mind was not on my work that day.
My fourth phone call was made and my heart was in my mouth.
"I've just got the results."
"Did I pass?"
"I'll just have a look"
I couldn't believe it.
I was still waiting.
The thought entered my mind that every time I had been due
to hear important medical news, I had been kept waiting. Probably
not true, and of course the doctors have more than one patient
at a time. But it is annoying.
"You're a lucky man. These counts are within the normal range."
I felt immediate relief and joy.
"What do you mean 'normal' range?"
"There's a range of sperm counts that would be considered
normal. Your count is on the lower part of this range, but we
would still consider you normal ...This is great news."
"It is, isn't it. Thanks doc."
I replaced the phone, and stood still until it sank in.
I had won again.

Few others knew of the test that had been performed that
day, and I had to tell someone. So after phoning Anne, I shouted
some friends a drink, and recalled the day's excitement.

We decided to try to have children in the early months of
1984. In the back of my mind, I harboured the fear that I would
be passing on genes rendered defective by the chemotherapy – or genes that caused the disease.
I kept this to myself..
When Anne's pregnancy was confirmed, there were many
celebrations. We couldn't wait through the initial three months
before telling people. Deep down, I adopted a wait-and-see
attitude, but I was still extraordinarily happy. After thirteen
weeks the unthinkable happened.
A miscarriage.

I received the phone call at school, and left immediately for
home. Anne was very distressed, but she was to show great
strength over the next few traumatic days, at home, and in
hospital.
There was the night to get through.

The child had died, and was to be removed the next morning
at the Mercy Maternity Hospital. We convinced ourselves that
it must have happened for a reason. Perhaps the foetus was
rejected because of some major deformity.

As we approached the East Melbourne hospital, Anne realised
that her body was not going to wait much longer. We hurried
from our car, but not fast enough.
About one hundred metres short of the entrance, Anne stopped
suddenly. It had begun, right there in the street, only minutes
before we would have been within the safety of the hospital walls.
It was an unbelievable experience.

Three people, one of whom was a nurse, walked right past
us, ignoring our predicament. Finally, a middle-aged lady asked
if we needed assistance, and subsequently fetched Anne a
wheelchair.
The scheduled curette was still required, even after this mishap.
We had to try again.

When this type of tragedy occurs, you tend to discover that
many others have been through a similar ordeal. This knowledge
made the grief a little easier to bear.

Just over a year later, on October 16 1985, in alrnost total
darkness, I sat staring at the clock on the wall. It had been thirteen
hours since they had induced Anne's labour, and now she was
in theatre having a caesarian section to deliver our child.
I had asked the nurse how long the operation would take,
and she had suggested about twenty-five minutes. It had been
forty-five minutes already. My mind was racing. What disaster
had occurred in that sterile room?

Again I blamed the treatment. In my solitude I prepared myself
for bad news, and prayed that Anne at least, had come through
unscathed. The time could not have passed more slowly.
They wheeled the trolley out into my view, at a snail's pace,
then turned towards my seat. It had been fifty minutes since
they began the operation. I had expected the howling of my child
signalling the celebration of a birth. Instead a quiet whimper,
and some tired eyes. I prepared myself for bad news.
But all was well. Both Anne and Daughter No.1 were going to be
all right.
She was a beautiful baby of 8 lb 7 oz.
As I spent the next twenty minutes, with my daughter in my
arms, I took the time to appreciate just how fortunate I had
been. I wanted to see Anne as soon as possible, to share the
excitement.
My girl has grown into a most loveable young lady.
A very special child.
I now have three beautiful daughters aged 21, 19 and 16.

MORE CHAPTERS TO FOLLOW

Comments

Chapter 7

Thu, 09 Aug 2007 09:04:26 +0200

1976 –THE WORST OF YEARS

Regular strolls around the Racecourse Estate provided exercise during the week. It was so difficult to study because it seemed to have lost much of its relevance. This was my final year but in the scheme of things did it matter? I found the walks necessary because I needed time alone; time to evaluate my present,and my future.

Pondering the possibilities too deeply was fruitless as I
soon discovered. It's like trying to find meaning behind life, or
the death of a friend. You are left with unanswered questions,
and an enormous emptiness. I felt that I needed to stay fit in
body and mind, to slot straight back into normal life at the first
opportunity.

My grandfather and I had often walked around the area, as
he showed me through the growing houses. I learned a great
deal about building; and about people's tastes. Our walks were
usually in the calmness of late morning, when the weather was
pleasant, and few others were around. It was easy to become
lost in thought, and not realise that time and distance had passed.

The GoBetween was a novel being studied as part of the Year
12 course, and my mother drove myself and a friend
to see the film of the novel at the Dendy Cinema in Brighton.

I needed to find an escape from my routine, and the film helped my understanding of the
book. But such a simple exercise posed major problems for my
parents, because there seemed to be no consistency between the
policies of doctors on avoiding infection. Obviously with my white
blood cell count below the optimum level, I was in some danger.
And the next CROP could not be commenced on time should
I be ill. Should I wear a hospital mask, as was suggested, with
disinfected hands, and keep excessive distance from others?
I had worn the masks whenever friends visited the family home,
but the paranoia could not continue. My counts were not that
low at that stage, and an infection should only slow the rate
of treatment. I was trying to think of every justification possible.
So after lengthy discussions, we decided a protective mask was
not required, and luckily all went well.
I would have felt so stupid had the decision gone the other way, because I would certainly have looked out of place.

Outpatients could not look forward to Wednesdays. I was due
for CROP number three and the prospect of this had me hoping
that the preceding days would never end. It was easier
approaching the visit, if only a check-up was planned.
Treatment, or results of tests, made the trip more stressful.
Recently, my mother and I had been introduced to the group.
At the clinic were some fine people who suffered from this
disease. One of these was a grandmother of six.
"I have had leukaemia for four years," she told me one day,
as we sat on a green bench waiting for our names to be called.
Her olive face was worn by the years, and her wig sat
precariously above. A short, stocky lady, she wore a floral dress
that exposed dramatic veins along her arms. The yellowing bruises
that riddled them reflected the intensity of her fight.
With a heavily accented, caring voice, she began to share her
thoughts.
"Things haven't been that bad, but I wish they would stop
missing my veins."
Her treatment was very different to mine, so I could only
imagine the amount of hardship she must have already suffered.
"...and if I cut myself, I always make sure that I cover it quickly
with a bandage. I'm so scared that one of the kiddies will catch
it."
"They couldn't, could they?" I said timidly. The last thing I
wanted to do was disagree with her.
"You never know. You can't be too careful."
Her love for her grandchildren was there in her eyes.
Naturally her relatives were in no danger, but her concern
for others was really moving. She maintained that her sixty years
had been filled with happiness, and she could face her limited
future quite contentedly. There was a level of acceptance that
I, would have great trouble achieving.
She died one year later.

Shane was a slightly built will-of-the-wisp who, at irregular
intervals, attended the clinic. His sparsely covered scalp identified
him as one of the group, but he was special because he was
independent. He was only a few years older than myself, and
at a stage of recovery which did not require heavy treatment.
It was some type of maintenance program. I lost contact with
him, not knowing whether he had simply moved, changed clinics,
or failed in his battle.

Keeping in contact with these people became more and more
difficult as time went by. Each patient's schedule was different,
and often asking the nurses was the only way to find out how
others were progressing. After a few years, and some negative
answers, I stopped making the inquiries.

One of the friendliest couples we met was an elderly Polish
couple. The husband had acute myeloid leukaemia, and at sixty-•
five years of age, the odds were stacked against him. They were
very much in love, and spoke highly of the country which had
adopted them. The struggle was a valiant one and, after six years
of treatment, regular hospitalisation, and so much discomfort
and trauma, his situation was looking relatively good. Then bowel
cancer was diagnosed and took his life shortly afterwards.
His spirit had been shattered.

I was down to around 65 kg, which is 20 kg less than my
present weight. A lack of appetite was responsible for this
situation, and I knew that I had to force myself to eat. My mother
was lacing my drinks with glucose, and my grandfather had
supplied a can of chocolate-rnalt vitamin supplement drink, large
enough to last for years. This is the only vitamin supplement
that I have ever taken.

With my counts up to an acceptable level, I knew that the
next CROP was due. At 4.30 in the afternoon, the last of the
drugs had been injected into my veins. The release of the pressure
band around my forehead felt good, because I thought it had
been on too tight. The sheer volume of the fluids injected shocked me
again.
During the trip home, I stared blankly out the side window,
as nausea swelled within. My mother concentrated on the peak
hour traffic, with its tedious slows and aggressive speed. It was
a frustrating experience.

Even though it was not my first CROP, I was truly unprepared
for the night ahead. One option, I believed, was to eat dinner
as soon as I arrived home, to combat the sick feeling. Eating
has that effect for a very short period of time, but you can feel
that dominating sensation resurging by the minute. The portable
television took my mind off my sickness; temporarily.

Dad arrived home and sat on the end of the bed. He had had
a hectic day. I was telling him all about the afternoon at the
clinic, when my mother entered the room with an empty icecream
container, a neatly folded towel, and an extra pillow.
"What's that for?"
I was looking at the ice-cream container, with drops of water
clinging tightly to its sides. Mum was ready for the night I was
trying to believe was not going to happen.

"Just in case," she smiled knowingly.
"Your dinner's ready. Do you want to come out and have it
now?" Mum asked Dad.
He nodded, told me that he would return later on, and left
the room. When the last of their footsteps could be heard as
they moved down the hall, a minor wave hit. The muscles of
my stomach contracted at once, and I found massive secretions
of saliva filling my mouth in preparation for the onslaught. But
I had not vomited.

Five minutes later, it began.
I rolled to my left and grabbed the bucket in one motion. It
was filled within seconds.
"Mum!" I yelled down the hallway in between some very deep
breaths. My eyes were filled with tears.
No answer.
I repeated the call, fearful that the next bout may arrive before
the replacement bowl. This time my mother responded, and only
just in time. The drama had begun.
The vomiting did not cease when the stomach had
been emptied. At regular intervals of about twenty minutes, the
attacks took hold of me. I tried to sleep, but it wasn't until 10.30
that the cycle ceased. My parents had been on the run for four
hours. Feeling good was a temporary state, because the next day was
to bring more of the same for each of the four days.

This was the plan for 1976 and 1977, all going well; sufficient
CROPs to achieve full remission, with monthly bone marrow
biopsies, regular full blood examinations and a June session of
radiotherapy and lumbar punctures. In fact, the chemotherapy
lasted until June 1978, before a course of tablets replaced the
injections.

My studies were not progressing brilliantly, but the notes which
My friends regularly brought to me were an enormous
help. They kept me in contact with the rate at which my subjects
were being covered, and I had access to my sister's H.S.C. notes
and summaries from my next-door neighbour.
There was still that chance of success.

My parents were conscious of the situation that my friends were placing themselves in, and made every effort to make them feel comfortable. Each time they visited me, they
received an introductory talk in the front lounge room on how
I had been, and what was happening to me. This saved them
possible embarrassment, and made their stay less traumatic for
everyone.

A parking ticket was our introduction to the Peter MacCallum
Institute on June 4 1976. The assessment by a variety of clerks
and cancer experts had taken all day, as we were shuffled from
waiting room to waiting room, along sickly green corridors. The
car sat still in the shadows of the building for too long. To make
matters worse, it was covered in the dust kicked up by
construction workers. My mother and I were weary and
annoyed.
Over the next four weeks, I was to make alternate visits to
Peter MacCallum and the Alfred Hospital. During this time, my skull and
spine would be treated with radiation and chemicals,
respectively.

Day One began with the shaving of my head. I now had a
"crewcut", but knew that the stubble would fall out soon after
the radiotherapy began.
Bright blue lines were carefully drawn on my head to accurately
direct the radiation. They were a grid that partitioned my skull. The massive machine was rotated until its line of sight matched the markings, then a short dose was
delivered after the attendants sought safety outside the room.
This was a little frightening.
I had to remain motionless throughout, while my mind raced.
These are some of the thoughts I had at that time.
"Don't move."
"I thought radiation caused cancer. What are they doing to
me?"
"My shin is so itchy!"
The only noticeable side effect was the metallic taste in my
mouth during the procedure. Radiotherapy was nowhere near as fearsome
as chemotherapy.

"These knees must be raised further", came the instruction as
I lay on my side in the Haematology Procedure Room back at
the Alfred. The exaggerated curvature of the spine gave the doctor
greater access to the interior of the lower backbone; and the
spinal fluid. A lengthy needle was pushed between the separated
lumbar vertebrae into the spine, and a sample of the fluid was
extracted for examination.
A drug was then injected to destroy any leukaemic cells which
had escaped attack by the toxic chemicals that were already
circulating in my body. Apart from a short, sharp pain, the actual
procedure was not too traumatic, but to have its desired effect,
twenty-four hours had to be spent in this horizontal position.

My father had driven me to the hospital by 8 am. in his specially
adapted station wagon, and collected me after work for the return
trip home. In the rear of the car was a mattress which allowed
me to remain on my side for the duration of the journey. Then
the night was spent lying on another mattress on the lounge
room floor at home. It was an incredibly boring experience. The
next day saw me back at Peter MacCallum, ready to bear my
head to more radiation.

I actually knew that I was looking sick during this time, with my carefully selected
wig barely masking my bald scalp, and my shrunken frame starved
by nausea.

Sick, but I was confident.
Confident of winning and proving Dr Whiteside correct. I viewed
others as quite different to myself, even
though in many cases their predicament was similar to my own.
Accepting temporary baldness is a problem many victims of
cancer must deal with. It doesn't matter how many people tell
you that it looks natural; the mirror cannot lie. You can quite
easily recognise almost all full wigs if you look carefully.
We had purchased a wavy dark wig from a highly recommended
retailer in the city, then at home, I butchered it into a style that
I liked. My hair would grow back in only a few months I had
been told. This was a comforting thought, but there was nothing
that was going to prevent the time of baldness being embarrassing.
And it was.

My skimpy beanie in Essendon colours was warm, but could
not hide my baldness. The wig was held on by restrictive bands of elastic which became very annoying after a few hours. Often it resulted in a nagging headache.
My self-confidence took a real beating.

With a battle for life under way, my body and the drugs fighting
the killer disease, some may believe that I really should have
been thankful that everything was going so well, and not so
concerned about my appearance. There were so rnany others
that I saw, who could no longer really worry about the way they
looked. They were just too ill.
But self-image I found to be vital. Not only did it occupy my
thoughts for a great deal of the time, but it gave added reason
to fight.

I would return to school for six weeks at the beginning of
Term Three, in time for a program of revision before the final
exams. Little had been achieved in regards to study during my
initial stay in hospital. Throughout the winter, I had been
in danger of infection, and violently ill at intermittent stages,
so my study habits were haphazard. Whenever I could motivate
myself, I would spread my texts across the dining room table,
and try to rote learn my courses.

I had a good background in the mathematics/science subjects
and excellent tutors in my engineer father, and sister Linda who
had achieved her H.S.C. the year before.
Even if I failed, I was young enough to spend another year
on the course if required, because I was a year younger than
the normal age for attempting the Higher School Certificate. But
this possibility was not one that I wanted to seriously conternplate.

An unusual reaction to the radiotherapy occurred. I was
experiencing a sickness far above the intensity expected by the
experts. This led to a special discussion with the Haematology
sister. We were back at the Alfred, waiting for notice that my
blood counts had returned to an acceptable level, so that another
CROP could begin.
"414983."
"HiWayne," the sister replied, smiling at my hospital humour.
"How are you today?"
"Fine thanks."
She had a warm face, highlighted by striking eyes.
"Except for the nausea," I threw in quickly.
"It's strange," she remarked with a concerned expression.
"Tell me what has been happening."

We talked about the sickness for a little while, until she
discovered the problem.
"Sounds to me like you have an allergy to that Nystatin you've
been taking. I've seen that happen before."
The antibacterial mouthwash that I had been using for six
months, with regular courses of antibiotic tablets, was the culprit.

It was not the radiotherapy as had been suggested, so the doctors
changed my prescription that day, and the nausea ceased. I really
didn't need to feel sick when I wasn't having chemotherapy. I
was sick enough during it.

My family had become well-adapted to my erratic routine. The
demands which my situation placed on all were great, and often
at the expense of others' needs. Melissa and Dale were still at
school at this time, Linda was at University, and Gary was working.
They learned to live with a persistently sick brother, and accepted
that I needed special attention from our parents. All gave
tremendous support to me; in fact they still do.

I worked hard through the weeks before the exams, and the
doctors altered my schedule of drugs to allow me a healthy
outlook for this important time. My escapes from study came
in peaceful walks, or energetic sessions practising on
my drumkit. Music has always been a key interest.

I was readjusting to school life, but I wondered why no one
questioned my experiences nor drew attention to my false hair.
I had reappeared amongst a group of tense, preoccupied
Year 12’s who lacked real confidence in approaching me and
discussing my past or my future. Many of my friends seemed
to actively avoid me, or only engage in small talk.
Our school had very strict rules regarding the length of students' hair
and the wearing of correct uniform, so it was lucky that the
School Marshall knew that I wore a wig. It could have been quite
embarrassing, because the wig was longer than hair was allowed
to be. I was still most definitely worried about my hair, and would
be for months to follow. Naturally it took much longer to grow
back than I had imagined or had been told.

When school finished, leaving two weeks for study, I decided
to retreat to Sherbrooke with Peter Carrodus for several days
of uninterrupted work. No telephone, and no functioning
television. I crammed a great deal of knowledge into my brain in
preparation for those vital examinations. The peace and quiet
made study much easier than usual.
It was a really productive time.

Comments

Chapter 6

Mon, 06 Aug 2007 13:01:27 +0200

MY DARKEST NIGHT

She had answered the question. The sledgehammer had begun falling.
“There aren’t any patients who have been through this to help you.”
I stared deeply into her eyes, and then turned away.
That sickly feeling deep in my gut signalled the beginning of a realisation.
The question had been skilfully deflected by a variety of hospital personnel up until this day. I began to ponder what I really knew of the disease that had already changed my life. It had given me my first stint in hospital, made this institution a regular part of my weekly activities, and thrown me amongst the sick and dying.
What did I know?

I had been told earlier that I was in for well over a year of treatment, including drugs released into my blood and spine, and radiotherapy designed to eradicate any cancerous cells in my cranium. I could continue my studies at any pace which seemed comfortable to me, and I would resume a normal lifestyle, free from any related interruption, after the course was completed. It wouldn’t matter if I had to repeat a year or two. I was young for Year 12.
I was in for a large shock.

This initial feeling was similar to ones which I have experienced before and since. It is a reaction which the body saves for times that are serious and threatening, such as injuries sustained in sport and car accidents. In 1986, I was hit by a speeding car, which crushed my driver's door, and then pushed me sideways fifty metres up the road. It then skidded head-on into a power pole. My wife Anne realized something was amiss when the power went off for the entire suburb. The feeling which arose immediately was the same - a mixture of fear and shock. When I was struck on the cheekbone with a cricket ball, which I couldn’t see, bowled by the opening quick it felt similar. My cheekbone was crushed but my reaction was not pain, it was shock.

I clung desperately to the "promise" of a cure which Dr Whiteside had given to me weeks before. He said “We will cure you”. But I needed to know more. I sought answers to many questions, especially the one about the absence of long-living patients. Why couldn’t I talk to someone who had been through the treatment and could help me? So, on this day I paid a visit to the ground floor office of my social worker friend.
"Can I come in?"
She looked up from the papers on her desk.
"Sure Wayne. How have you been?"
"Oh, not too bad. Those drugs are pretty potent though." "Yeh, I can imagine," she said.
"Have you seen any of the others today?"
This wasn't getting me anywhere. I was not really in the mood for small talk.
"No, not really ... I ... I need to know more about the disease."
''I'm not sure how I can help."
She could understand my desire to know more but, like others, relied heavily on well-rehearsed answers. She wasn’t going to give definitive answers as she couldn’t. She knew what usually happened to patients like me.
My parents were waiting to take me home. I pressured her for information, and she gave me a rather large textbook which she thought adequately covered the subject. Neither of us knew that it was probably five to seven years out of date.
I looked forward to reading it.
"I'm not sure that I should be giving you this book. Things are changing so quickly."
"I don't know that you should be reading this."
Her doubts were mounting. She was unsure of exactly what I'd been told, and what her role should be.
"I'll be O.K.," I said with a forced smile. "I just want to look up a few things."
She seemed relatively happy, so I hurried from the room.
I sat in the back seat of the family car, and drew back the hard cover.
The enclosed material was both clinical and graphic in its presentation. Staring at me were the disfigured faces and limbs of leukaemia patients, and within the print were some basic facts. I was particularly taken aback by the red spots which grew to become enormous blotches. Some types were worse than others, but the general pattern was fairly consistent. A variety of programs of chemotherapy and radiotherapy could be employed, but within two/three years all patients would suffer relapses, and would be dead within five years.
DEAD WITHIN FIVE YEARS.

I stared at the page in disbelief.
Then closed the book for several minutes. Then re-opened it.
Dead within five years.
A death sentence.
I could not adequately describe my feelings at that time; although I know I must try. I had enough time to fully experience these as I sat in silence for the remainder of the trip, contorted a brave face upon arrival home, then succumbed to the bombardment of fears through what was my longest night.
I fe1t betrayal. Everyone had lied to me - doctors, friends, nurses and family alike. I felt like someone had thrust robbed all of my life force and energy. My body drooped, my strength evaporated.

I asked that obvious question that can never be answered:
"Why me?"
And I felt fear. Fear that pushed past terror on the emotional scale at regular intervals.
The night dragged on directed by the tick of the bedside clock.
I was alone and dying.
Looking back at this night, I realise that I should not have bottled my feelings up within me. I should have shared them with my parents. At the time I thought an outward show of strength was the mature option: even though I was out of control.

Dead before my twenty-first birthday.
And a lengthy period of deterioration before then.
I had grown up with the normal attitude that childhood was fun, adolescence a real period of growth, and in many ways adulthood was when the rewards were reaped. Decision making, self-direction and the building of a family were some of these. I was never going to experience this phase of life.
I had not had a serious girlfriend. I was nearing the end of my timid stage, where conversation with the opposite sex seemed difficult, and now I had less than five years left. If I looked like those photographs in the book, they wouldn't want to know me anyway.
My thoughts seemed to race in a circular pattern through my impatient fears.
I contemplated my years ahead and my fate after death.
My faith was immature at this age.
And so the time progressed at that intolerable pace that goes with sleepness nights.
Darkness had surrounded me.
I rolled from side to side, but sleep was not even close, so I threw back the covers and strode to the window. My pyjamas clung to my skin, glued by nervous sweat. I was shaking.

The moon was full, but the stars were few. I had to be quiet, to restrain the urge to break down, as I gripped the window ledge and stared. Was there a reason for this; a meaning behind the madness? In the past I could rely on everything turning out for the best, no matter what the problem. But this time I could see no way out.
Books don't lie. It was there in black and white. I was living out a contract, variable up to five years, but no longer.

My parents knew that I was dying, but had tried to protect me from that painful knowledge. There was no point in continuing the treatment if there was no hope of recovery. I convinced myself that it should end as soon as possible. Why should I go through the trauma? It was pointless.

After an hour of staring at the endless sky, I sat back on the bed and wondered.
How do others cope with death?
Feelings of resignation seemed to comfort only on a superficial scale, hiding the real fears behind. And I didn't want to die.
I desperately wanted to live.

It is times like these that one hopes beyond all other hopes that there is a God - that someone is listening to your prayers for mercy, and is capable of either a miracle cure or a promise of heaven. But why should I be spared and not others? Clearly, I was sixteen and in the last phase of my life.

The light of dawn slowly invaded my heavy solitude. Each day was to be treasured as none before. Isn’t that what I was supposed to think?

I had become totally engrossed in this new, scary, distorted view of life. I was so thankful that my mother, after flicking through the text, broached the subject.

The information which had knocked the very fight from my soul was, although not totally inaccurate, not really applicable. Sure there was a chance that my body would not respond favourably to the planned treatment. That I would relapse in the predicted time was a definite possibility. But it was not the certainty described in the book. I did have that chance of recovery, that was denied to patients diagnosed only a few years before.
I had many things in my favour.

I was young, strong and fit, which is a definite advantage in both fighting the disease and in coping with the intensive treatment. The disease had been caught in its relatively early stages, so that my absolute minimum period of hospitalisation was reduced from six weeks to three-and-a-half weeks. I had an extremely supportive group of people around me, and the treatment being used was an improved version compared to that used before.

It was explained to me that previous courses of chemotherapy had failed because the drugs found difficulty penetrating into the central nervous system - the spine and cranium. So radiotherapy, and drugs injected through the backbone into the spinal fluid, were used to achieve a full coverage of the body. It made sense. It gave me confidence.

I now realised that no one had lied to me, but the worst possibilities had not been described in full. I didn't mind, because one of my greatest weapons in the fight was self-confidence, and an unshakable belief that all would be well.

With renewed commitment, I faced the months ahead. I look back with gratitude that this night of despair was a once off.

Further Chapters to follow soon.

Comments

Chapter 5

Fri, 03 Aug 2007 15:23:30 +0200

TIME AFTER TIME

Short and unsmiling. I hadn't seen this doctor before and yet he was preparing to insert a monstrous needle into my arm.
I needed a blood transfusion.
I was anaemic.
It must have been his last task before clocking off, because at nine o'clock in the evening he was not interested in small talk, whereas I was ready to tell him all about my first stint in hospital.

I looked in bewilderment at this stocky man, still bearing the scars of adolescent acne. He was going to use a steel needle that seemed to be about five centimetres in length. I had never seen anything like it, and I told him so.
Its diameter was frightening.

Unperturbed, he searched my forearm for a suitable vein, and applied an antiseptic wash. He had chosen a vein in the side of my wrist, that I did not know even existed. Perhaps it was of suitable size.
In silence he forced the instrument through the skin, into the vein which had stood to attention, and right through the other side. It was not my night.
"Ah. I'm having a little trouble with this one."

I couldn't bring myself to answer. I knew that the pain now would be replaced by a nasty bruise by the morning. What can you say anyway?
I tried to relax my arm and keep it perfectly still.
The feeling of cold metal easing deep into the vessel was weird.
He ended by strapping my wrist with endless tape, and releasing the blood to drip slowly down the tube throughout the night. I was to try to sleep.
Not that I'm untrusting, but as soon as he left I sat upright in bed, and checked the label on the packet of blood, to ensure that it read A+. Then I fiddled with the drip regulator.
How could I sleep with that constant dripping, and the fear that it may stop? Later the nurse reassured me.

Luckily, in the majority of transfusions and IV drips that were set up, the smaller, more impressive butterfly needles were used. They rarely created much damage, and were easily inserted and removed. But you still had to be alert enough to prevent the nurse wrapping your arm or hand in layers of adhesive tape.

During my first week in hospital, four different men of the cloth came to visit me. Others in the ward probably thought that my number had come up. The visitors included the School Chaplain, the Alfred Hospital Chaplain, a family friend who is an Anglican Priest and our local Parish Vicar. I could never complain about the religious support I was given, especially from these four men. My faith was in the balance but without my knowledge it was growing.

Around four o'clock on a weekday afternoon, my mother arrived with a party of six or seven of my classmates. The visit was really appreciated after a week and a half of hospital routine. Their expressions were of a type I would soon become accustomed to - those of fear, concern and embarrassment.

"What's been happening around the place?" I asked.
I cannot recall the response, although I do remember seeing eyes directed at the floor. Cricket dominated the initial stilted conversation.
"Have I missed much?"
Some of the barrier had been broken, as they grabbed the opportunity to inform me about who was doing what. Classroom antics and matters of discipline. Saturday nights, parties and girls.

They came to the hospital with a common dilemma. What do you say to a friend who will probably die? I assume that their parents attempted to explain the disease to them. But how accurate would these descriptions have been? They must have been out-of-date, and based largely on heresay.
I found out later that they believed that there was little hope.

I must admit that I had intermittent suspicions of doom throughout my stay in hospital. But each time I looked at myself, with no outward signs of the disease, I felt reassured. Vomiting side, I felt good most of the time. I could not notice the physical changes, because I saw myself every day. My weight dropped to around 62 kg, and my face became drawn, but I was none the wiser.

Later, I got quite a shock to realise that I could encircle my upper thigh with outstretched hands, and the fingers and thumbs would touch. Holding my hands up to the light, away from my legs, made me recognise the loss. But this was in the future. At the time I am describing, I thought I looked pretty good.

I had asked for the services of a physiotherapist to attempt to regain some muscular condition which was lost during days of inactivity spent in my isolated room. I was still thinking in terms of one or two matches being lost from my cricket season, but no disruption to my commitments with the first eighteen football side in the winter.
She gave me weights suitable for repetitive exercises in bed, designed to strengthen my leg and arm muscles. They were old, but effective.

"Strap the weight around your ankle like this," I watched keenly. "Keep your leg straight, and raise it to about here." It felt easy at the first attempt.
I enjoyed a relaxed discussion about muscle strength with the expert, and then after about half an hour, promised that her carefully designed exercise program would be followed to the letter.
Satisfied, she left.

As would be expected, I began this routine with great enthusiasm only to succumb to lethargy as the days went by. She would only return once to check my progress.
I later experimented with isometric exercises, like pressing knuckles against the bed support or the walls. They were easy, and seemed effective.

There were some embarrassing times which I feel compelled to describe. These may seem normal to those people who are forced to frequent hospitals more often than 1. But to me they were extraordinary.
After treatment began, so did the restriction on using the shower. So in walks the nurse, sleeves rolled up, prepared for the daily bed wash.
"You're joking!" was my initial response to the suggestion.
She had me. It was an everyday occurrence for her, but I had never been the subject of one. Her grin stretched from ear to ear.
"I'll be able to manage," I said.
"You sure?"
"Yes."
"I'll come back in five minutes to see how you're going."
With that she turned, and left the room.

I jumped from the bed and landed awkwardly on my left ankle.
There was no time to think about that. Then I dipped the face washer in the warm, soapy water, and began to scrub. It felt coarse, as did the towel which I used to complete the task. Luckily, the wash was finished before those familiar footsteps headed my way.

The nausea created by the drugs could be relieved by tablets, or by the use of suppositories which everyone seemed to think were more effective. I wasn't too keen on this type of remedy, but some days I had no choice. The doctor had delivered his instructions, so the nurse would breeze into my room, slip some rubber gloves on, and roll me onto one side. What do you say while this exercise is proceeding? I usually said nothing.

There were also the times when following the inquiries about the regularity of my bowels, an ultimatum was delivered. Either fill the pan, or an enema would be required. I never had an enema.

Everyone was delighted with the results of the first and second CROPs. The number of cancerous cells had declined dramatically, and my stay in hospital looked like being shortened. I was coping with the life "inside" but you could never really get used to it. The longing to go home grew stronger each day.

The early morning awakenings were followed by regular readings of temperature, blood pressure and pulse, and finger pricks or needles sucking blood from my arms. The antiseptic smell hung heavily in the room. Often, some of the readings were finished before I was really conscious.

A full understanding of my predicament was still a way off.
The thought of resuming normal life after three and a half weeks away from home was exciting. I even questioned the doctor regarding my availability for selection in the school cricket Xl the Saturday I was discharged from hospital. He politely suggested that it would not be such a great idea.

The chemotherapy had had the desired effect, and I felt good.
Apart from the boredom, the intermittent sickness and the isolation, the trauma seems now to have been comparatively minor. Far worse was to come. I was naive enough to imagine I was almost through the ordeal.

A month was decided upon for the recovery time before more treatment could be given. I was out of hospital, and that was a real achievement, because the minimum stay of six weeks had almost been cut in half. I was now to be an outpatient which meant weekly visits to the outpatient clinic.

My arrival home was a happy occasion for my family, although the demands and strains I was to place on them were going to be enormous. I had been moved from my colourful upstairs bedroom, its walls covered with almost lifesize rock posters, to the ground floor study where I could be more easily looked after. Also my parents wanted to restrict me to using the downstairs bathroom, rather than sampling all of the germs in the house.

There are seven of us in our family. Gary and Linda are older than I, and Dale and Melissa are younger. They have always been most loving and supportive, and formed a platform of strength for me to fall back on. It would be hard to gauge what effect having an extremely ill brother in the house had on them, but they never complained within earshot of me.

"Reed."
"Wayne?" asked the sister. "Yes."
"414983," I stated, confident that my U.R. number was still correctly entrenched in my memory.
"Just a small jab," she warned.
Outpatient blood tests were taken on the second floor at the Alfred Hospital. It was just before lunch on a Wednesday. I knew that no treatment was to be given that day, because I was barely one week out of hospital, and the purpose of the test was to determine how far my blood counts had risen. It would be quite dangerous to administer the chemotherapy to a system already sparse in blood components.

I watched as the tourniquet was released and the blood streamed silently into the syringe. My right arm was used because it had, to that date, retained its productivity. With the application of the band-aid, the waiting game began. My mother and I had somewhere between two and five hours to fill in before I was to be seen by one of the specialist team.

During this time my blood would be processed, and the reading phoned up to the second floor clinic. Often we would buy some lunch, and wander across into Fawkner Park where many other: would be seated. Here you could enjoy calmness and the warmth of the sun.

Nagging at the back of my mind was the loss of school time. I guess that every day had to be tackled by itself, because this is how others around me viewed the situation. In casual moments, I allowed my imagination to ponder my future, but I knew that I had little control over it at that time.

The real wait began at 2 p.m., when the leukaemia outpatients would file into the waiting room. There seemed to be little reason behind the order of consultations decided upon, and this became a regular topic of conversation.
Was it those who had their blood tested earliest, those requiring the most radical treatment, or those who were to receive bad news? We knew that the panel of medical experts, chaired by Dr Whiteside, had discussed the progress of all of us at their weekly meeting before the clinic. But time and time again, theories were disproved. One day you could have your blood tested early, check into the clinic at 2 p.m., and have to wait until 6 p.m. or thereabouts, to see the doctor. This can be quite frustrating when the meeting often consisted of something like the following.

"How are you feeling, Wayne?"
"Really well, thanks Doc."
"You're going well, your counts are up nicely."
"Good."
"Hop up on the table, I'll give you a quick examination and then you can go."

Five minutes later, Mum and I would make our way to the pharmacy, then the car. It was often parked a long way away and ahead was a battle through peak hour traffic. The journey home could take forty-five minutes. But deep down, I was happy that I didn't receive injections of the toxic fluids, and that my progress was satisfactory.

On another day, you could be called for the consultation at 2.15 p.m., and be home by 3 p.m. Then there would be chuckles, and witty comments arising from fellow patients lining the path to the examination rooms. There may have been some reason to the order, but I never discovered it. Even in the midst of a personal battle for life, my friends in illness found doctors and their ways amusing.

Sitting in a waiting room such as this one, can at first, be incredibly depressing. The uncomfortable, straight back bench¬type seats, and the outdated assortment of women's magazines only added to the effect. My first experiences were unpleasant and I was deeply grateful that my mother was with me. Others in the room were in various stages of ill health, caused by the disease, and their predicament both made me feel lucky and started me thinking that I really didn't understand what danger I was in. A full understanding was not far away.

After the first couple of clinic visits, I began to realise that this ritual was going to become a big part of our lives. And the characters that I shared this with were unforgettable. Their cheeriness and courage in the face of life-threatening illness, and against most unfavourable odds, were unbelievable. When on a given day someone was not there, my heart sank. None of these people survived to my knowledge.

The pharmacy was particularly annoying, especially those times when the day had been long, and I'd had chemotherapy. I knew that the vomiting would still occur at the allocated time, whether I was home or not. Dad had placed a mattress in the car for me to rest on the journey home as the waves of nausea grew. No seatbelt required. A long wait for tablets was frustrating, and scary. Luckily, the unthinkable never happened.

Around this time, April 1976, my parents were contacted by the social worker assigned to help leukaemia patients and their families. I had met this lady while I was in the ward, and I found her to be quite friendly and supportive. She was to play a major role in my worst time, not necessarily through any fault of hers.

Mum and Dad have always maintained that the support given to parents during that time, was far below that which was required. As parents trying to deal with the experience, with the incredible changes in their lives that followed, they felt quite alone. Not that the medical staff did not help all they could. But groups of people with common situations, such as those often found nowadays with cancer patients and their families, were not around to our knowledge in 1976. The medical terminology alone must have been dumbfounding.

When I finally tried to fully understand the disease, I received a huge shock.

Comments

Chapter 4

Fri, 03 Aug 2007 14:32:08 +0200

DANGEROUS MICROBES

I remember one morning when my squinting eyes fought hard against the arrival of a new day. They focused on a cleaner, silently stalking around my room.
I dreaded these times.
"How are you?” I inquired, without caring about the response. I slipped deeper below the sheets as I had caught the attention of the unshaven man, whose colourless, disinterested eyes reflected a poor level of job satisfaction. I was in no position to feel sorry for him, nor to ponder his seeming lack of zest for life. I thought him to be a grubby ¬looking man, and that worried me.
Of course, it was my paranoia that led me to this conclusion. I have no doubt that he was as clean as any other Alfred Hospital employee who regularly entered my room. But my imagination was fertile.
Time stood still as I waited for the man to answer. He seemed spellbound by the lethargic stroke of his mop, and I tried to erase unkind thoughts of countless bacteria finding refuge in his thick coverage of body hair. I knew that infection could seriously threaten my recovery.
"O.K.," he replied, then left. I heaved a sigh of relief, but I still breathed from below my sheets for several more minutes. I had hoped that he wouldn't notice how I was trying to filter my air through the bedcovers.

When the white blood cells are few in number because of the devastation of chemotherapy, the danger of infection by micro-organisms becomes serious.
There was no way that the cancerous cells in my body could be eradicated without drastically depleting the numbers of circulating leukocytes. It was a tribute to the resilience of my system, that their numbers rose steadily soon after each onslaught of drugs; but even so there were times for concern. Without a fully functioning immune system, a minor infection could take on catastrophic proportions. The methods used to limit the chances of such an event, at times, seemed quite odd to me.

"Reverse Barrier Nursing" signs were displayed on the door and above my bed. They were there to remind or inform the nursing staff of their responsibility in limiting the prospect of cross-infection, while I was particularly susceptible.
Under normal conditions, it is the nurses who are at most risk of contracting a contagious disease, while performing their duties in a hospital. But while I was undergoing chemotherapy, it was I who was in danger from the nurses. So they wore paper ¬thin masks, and lathered their forearms and hands in antiseptic fluids, to minimise the chances of this occurrence.

For months after the initial treatment, my parents insisted that all visitors followed this practice. They were under instructions from the doctors. Even at home, after my stint in hospital, I wore a mask and avoided anyone with the slightest hint of infection.

Amazingly, I was encouraged to use the toilets common to all patients in that ward, where a most cosmopolitan array of potential pathogens would probably be found. And different doctors gave my parents different advice. They were understandably confused, and concerned.

I must conclude that no one really knew how far to take the defensive strategies. A balance had to be struck between being far too careful and irresponsibility. It wasn't necessary to create a glass-bubble environment, similar to that used in cases where the white blood cell count is zero, because my count was never that low for long. I made it difficult for all concerned, because I hated wearing a mask.

It was with some pride that I was told of the purchase of an airbed, to aid reverse barrier nursing. I showed no real enthusiasm to try the new innovation, and ended up spending only one night below its stainless steel gleam. I imagined that it was like living next to an airport, or a train line. There was a continual drone, as the fan blew streams of filtered air down over the length of my body, partly covered by a ruffled sheet.

It was designed to prevent the entrance of microbes carried on a breeze and, in theory, it was an excellent idea. If the breeze blew over me then out, then few if any germs would come into contact with me.

It was late in 1976 when I slept in this bed. I was a shadow of my former self, and deeply confused. The duty nurse kept me company for hours, talking originally about my fears, but later about music. She showed great interest in my ambition to play drums for a living, and told me about her failed attempt to sing in a band. I really needed to talk to someone at that time.
I was so lucky that she was there.

Now I cannot even remember her name, and I never had the chance to thank her.
It wouldn't have worried me which bed I was in that night. The only infection I did catch was a fairly minor throat infection, some months later.
Fortunately, I had the resources to fight it.

Comments

Chapter 3

Fri, 03 Aug 2007 13:00:39 +0200

RAW TREATMENT

Things were happening very quickly to me, leaving no real time for evaluation. I trusted the medical team wholeheartedly, absorbing those colourful fluids into my veins with just the customary wince.
What were they?
Severe nausea was part of the deal, I was told, so my stomach was in for a difficult period.
Subconsciously, my memory of this time has been hacked. There are some quite distressing recollections in that which remains, so I have felt quite comfortable with the less-than-perfect memory. Realistically, the intake of the toxic drugs and bouts of violent illness probably played a minor role in the loss, but passing time and the need to remain positive are basically the factors responsible.

Deep within the chasms of my mind has been trapped the thought that the battle could begin again. Even during the earliest times, that darkest of possibilities rarely surfaced. My forward planning never included ill health or a reversion to intensive treatment. To do so would have been opening wide the floodgates of negativity and despair.
Viewing proceedings from a different aspect left indelible scars within my parents, and their memories are far more vivid than my own. Much of the material to follow has been recorded thanks to their help in discussing incidents from throughout this period.
They are definitely not common topics of conversation in our family.

The course of chemotherapy chosen had been used before; but I understood that it had not been in use very long and perhaps not in the same dosages. It was called a CROP, because it consisted of five days of subcutaneous Cytosar injections, large doses of Rubidomycin and Vincristine inserted into an IV drip, and Prednisolone tablets.
It seemed so ironic to me that a drug such as Vincristine, with all of its potency, could be derived from something as peaceful as a flower.

During the first injections of each CROP, I wore an inflated pressure headband. It was designed to limit blood flow to my scalp, thereby minimising the effects of the highly toxic drugs on my hair-producing cells, which are typically susceptible to such treatment.
I had seen many patients showing various levels of hair loss attributable to these drugs, ranging from an almost indistinguishable difference, to devastated heads sparsely covered by lonely strands.

I have often pondered my own case where I believe no hair was lost due to the CROPs, and tried to come to terms with drugs that are so fast-acting that a ten-minute application of the restrictive band could have such a major effect, though the drugs would still be circulating long after the band was removed. But there again, my knowledge of the drugs is limited to their desired effect of killing fast-dividing cells such as cancer cells, hair-producing cells, sperm cells and white blood cells, and I know little of the biochemical pathways they follow when within the body.
Maybe my hair would have survived well anyway.

The CROP had its first side effect instantaneously.
It was a psychological effect, and one which was unavoidable. As the mammoth syringes of coloured fluid slipped coolly into my bloodstream there began an unnatural feeling of invasion, that although my trust was unfailing, my functioning body was having to cope with these potent intruders. I had to convince myself that their role was singular, and that my liver could rid my system of them, causing no other damage. This assurance was not forthcoming from the person on the other end of the needle.

“This feels weird,” I muttered, eyes fixed upon the I.V. drip. The bag of saline sitting menacingly above.
“These drugs can go in fairly quickly,” the doctor replied.
At the foot of the bed stood one of the ward nurses, watching the activity carefully.
“... but you shouldn’t feel anything more than a coolness in your veins.” He seemed introverted, efficient and trustworthy, and I could not have foreseen how much I would grow to feel sorry for this man. His lack of thought at a later date was going to cause me enormous anguish.

The dark headband made me feel my racing pulse.
“When do I get my next injection?”
“Tomorrow.”
“Same stuff?”
“No, just one injection of Cytosar. You’ll probably feel a little nauseous tonight. Let the sister know when you do.”
A little nauseous!
Who was he kidding?
Later the needle was removed, and a wad of cotton wool was taped to my arm.
Treatment had begun.

At a later stage in this book, I wish to fully document the reasons why I believe I have survived. But at this point I feel compelled to use the above example to illustrate one important factor.
In the treatment of potentially fatal diseases it is common that the medical profession are either in the throes of breaking new ground, or are using techniques developed quite recently, maybe at home or abroad. It would be most rare that they could predict all possible future side effects of toxic drugs.
Patients who could not cope with this fact, push it far from heir thoughts and continue with a positive attitude, would be placing undue mental pressure upon themselves.
State of mind is so very crucial.
You must be positive.
You must have confidence in those who are qualified to help you, and in your own ability to fight the disease.
I have often joked about the gross abnormalities that could have arisen from the cordial flavours floating around in my body, but genuine concern only occupied my thoughts about eight years later when my wife had a miscarriage.

The saline drip continued long after the man in white had packed up his tools and left. For the beginner its operation is a real novelty how the small wheel controls the rate of flow, and how different people prefer different rates. I didn’t know how fast it was meant to flow, but I always made a mental note of its original speed, thinking that I could make sure that it kept dripping like that when I was alone.
It seemed so important to me. In the early days I spent sleepness nights, keeping vigil on the endless dripping, regularly altering the mechanism.
I was far too concerned.

The drip would stay in place for stretches of up to twelve hours at a time, and it was very uncomfortable at first. It is a strange experience walking to the bathroom with your IV. drip stand trailing behind.
I had no recollection of the last time I had vomited, and nausea seemed a mild discomfort. I could put up with both, to achieve full recovery. At this time I still did not really understand the disease or my future prospects, so in a relaxed state of mind, I fell into a dream. About an hour was to pass before I really felt sick.

Pale yellow which bordered on colourless would best describe the walls. The brightness they reflected was hated each morning as it supplemented the even fluorescents prematurely fired into action. I never appreciated the early starts to hospital routine. It seemed ludicrous that I should be awoken at 7 a.m., only to lie looking at the ceiling for much of the day. I understood the reasons why, some days later.

My bed was designed for good posture rather than comfort, with its wooden support for a relatively thin mattress. Its hardness took several nights to get used to. It was a temperature controlled environment, where only one blanket was usually required.

Violent vomiting followed very soon after nausea had taken hold. It was then that I discovered the real function of the stainless steel kidney dish that had previously held my watch. Was it going to be big enough? It seemed so small.
Revulsion hit me.

Worse was to follow as the next wave was upon me before had time to reach the replacement dish. Tears streamed from my eyes and the stomach contractions continued as I tried to mouth pitiful apologies to the nurse. She, of course, was quite used to this type of reaction to the treatment and did not seem to mind scraping the vomit from the floor.

The worst facet of CROPs I found was their duration. The sickness felt following the initial injection extended into the night. One found relief by the next morning, only to wait in trepidation for the injection that day, in the knowledge that the same was to follow. It was the subcutaneous cytosar normally received in the upper arm.
A doctor’s routine in these circumstances is highly unpredictable, and the time spent in expectation of the treatment and its effects, meant that the temporary state of feeling fine was never enjoyed. I used to wish the man with the needle would not arrive, but then I knew that he would.

My stay in hospital was not without its more humorous times. Friends cheered me up enormously, with stories and laughs. Knowing the limitations of hospital food, visitors brought peanuts, potato chips and other reminders of home. I would eat them swiftly only to have them bounce back some ten minutes later. It was three years after this before I could eat chips again. Following the same result, I also steered well clear of peanuts.

Loneliness never really affected me during this time, as my parents made the monotonous trip every day. I had people to talk to, when I needed them, and this was very important to me. To get news from that normal world outside the hospital walls was a valued thing. It reinforced my desperation to return to my previous lifestyle.
My mother regularly sat through the afternoon shift with me, keeping my thoughts occupied, while my father tended to appear very soon after work in the city. The first week or so was restricted to family visiting due to the Reverse Barrier Nursing which was in operation.

In the adjoining private room was another patient, who quickly became a good friend. He was five or six years older than I, but we had much in common. In between treatments and care from the nurses, we spent a great deal of time in conversation, which rarely touched upon our common ailment.
One morning, when the drip was removed from my arm, I climbed out of bed and strode through the open doorway. I felt almost normal again. He was dozing.
I saw a thinning face topped by wisps of rebellious hair. There were obvious signs of the struggle within. As I turned to leave he spoke.
“I’m awake. Come in.”
“Sorry, Jeff. You were asleep.”
“No I wasn’t. How’ve you been today?”
I could see that he was extremely tired following treatment, and that it was only his friendliness that kept him awake.
“I’m feeling really good. I might pinch this paper if you’ve finished with it.”
“There’s a good article about the Bombers,” he said with a smile.
My friend of just a few weeks, Jeff, was a courageous man with a fine sense of humour. I felt enormous grief when I learned that he had finally lost his battle. Leukaemia had struck him down in the prime of life, when he had so much to give, and had so many plans. He holidayed in Queensland with his family and fiance when the doctors gave up all hope. His room was cleaned and ready for someone else.
The justice of this type of tragedy has always escaped me.

At this time, my surviving grandparents were my father’s father and my mother’s mother. Illness had taken from us their partners, but time cannot dim the special memories I have of both Mona and Bill.
Sylvie and Bert spent many hours with me during my period of intensive treatment. If I had to state the greatest qualities of the “heads” of the family, it was their contagious and unbreakable senses of humour, and the unqualified love and support they offered us. The part they played in my recovery is indisputable.
Bert kept me occupied in the early stages with lengthy discussions on topics which ranged from football to the Masonic Lodge (which we call the Waterbuffaloes), and Sylvie often let me beat her at a variety of card games, while we awaited the dreaded doctor’s arrival. I miss them both very much.
They are forever in my thoughts.

A real test of family unity came when the doctors asked for volunteers to donate white blood cells. A procedure room was filled with my parents, my sisters Linda and Melissa, and my brothers Gary and Dale. There was also an assortment of family friends, all of whom were eager to do whatever they could to help. The initial blood sample taken to determine compatibility was mild, compared to the potential prize for the person deemed most suitable.
Extracting white blood cells involves several hours spent lying almost stationary, with a needle in a vein in each arm. A tube carries the blood to a filtering machine, from where it is returned to the other arm, minus the white blood cells.

When treatment was given, my white blood cells would fall drastically in number. In fact, they should have approximated zero if all the cancerous cells are to be destroyed. Therefore, until the body had sufficient time to replenish its supply, there was a definite danger of infection. This was the major reason why aIl but the first injection of each of my outpatient CROPs were given to me at home. A hospital is a meeting place and breeding place for germs.
I was safer at home.

My mother was to volunteer at that time to donate her white blood cells to any other patient that she could help, and was to be called upon to assist two others. One was a man who was only diagnosed as having leukaemia after being involved in a car accident. He was lucky that Mum’s blood cells were compatible with his.

Later, there was talk of a full bone marrow transplant, to be carried out in London. The doctors said go for it, my parents said no. They explained that I had a one in sixteen chance of survival following that procedure at that time.
We put our faith in our specialist treatment at home.

Comments

Chapter 2

Fri, 03 Aug 2007 06:29:55 +0200

THE TROUBLE WITHIN

Good health can so easily be taken for granted, especially through childhood and adolescence, because you're active and enjoying life. It seemed odd when the oldies referred to the importance of health. Recognising that it cannot be guaranteed is clearly a huge part of growing up.
When someone or something threatens your very survival, you form a clear picture of what is truly valuable in life. It forces this reappraisal of thoughts and objectives upon you - the people, the needs, the ambitions, and the beliefs. The thought has crossed my mind that several people I have encountered should volunteer for a major trauma of some type, to give them perspective, to reorganise their priorities, to help them distinguish between the important and the petty. It amuses me watching people become frenzied over trivial things, but also I feel sadness for them.
Good health is a gift to be treasured. Now I know what my grandparents were on about.
The events of 1976 forced this realisation upon me. I now feel far more capable of distinguishing between that which is worthy of energy and commitment, and that which is not. Although sometimes after more than 30 years, I forget.

The telephone call broke the silence of the family room, dimly lit by the twilight hours. I was lost in the imagery of an outback novel, and made no attempt to respond. It was our local G.P., Dr Wrennall, with the results of the F.B.E., and because I had no reason to suspect anything too threatening, the voices did not capture my attention.
He knew that it was leukaemia, and was engaged in one of those horrific conversations that all doctors must dread. The need for more detailed testing was explained, but it was vital at this time, that my mother be prepared for the most likely, and worst, possibility.
A slamming car door signalled my father's return. It was the cue for my mother to move quickly from the house to deliver the medical bombshell. I sat in ignorance then, as I did throughout the evening, as my parents tried to decide whether others should know of the early diagnosis; especially me. Until the specialist had been consulted, they kept the knowledge to themselves, pinning their hopes on the slim chance that the results were wrong.
The next morning we made our first journey to Commercial Road, Prahran, and the dominating structure that is the Alfred Hospital. It was a bright, sunny Saturday, and I remember thinking that the traffic seemed unusually sparse. It was a route we were to travel many times over the next couple of years, and one which severely tested my sanity.
The admitting procedures that followed were tedious, and served to magnify the apprehension I could feel within me.
There is no doubt that my parents felt worse.
I recall the embarrassment of being wheeled towards the lifts by an orderly, with my newly acquired identification wrist band, because I felt remarkably good, and definitely capable of unassisted movement.
Looking at obviously sick people made the experience even more bizarre. I was waiting for a swift end to the stay, and a return to normality.

At this stage, I had no idea of the seriousness of the disorder.
My parents had shielded me from the premature concern which would have developed into absolute terror. I was sixteen and would have been floored by the absolute in-my-face truth. I will forever be thankful that their decision was to ease me into the situation, and then allow the specialist to deliver an accurate but positive diagnosis.
He did so late on that Saturday afternoon.
After admission to a standard six -bed ward, the procession
of pokers and prodders had begun.
"Hello, Wayne."
"Hi," I timidly replied, to the uniformed brunette in her twenties. "I just have to take a few readings. Temperature, pulse and blood pressure. Won't take long. You coping all right?"
The question was asked while she slipped a thermometer under my tongue, so I responded with a nod. With a few lightning scrawls on my newly hung chart, she was off. I was alone with my outdated magazines.
But not for long.
Muted voices drew nearer along the corridor, and I had to wonder who the subject of their intense discussion was. Suddenly, with a flick of the doctor's wrist, the flimsy curtain flew back, and I knew it was me. Was I a case worth looking at, or a novelty?
There were five men and one woman, all clad in the uniform of a doctor, although only one had the look of experience.
"Wayne is it? Do you mind if we have a look at you?"
I did not even consider the option of refusal. I was still in that dream-like state waited for this to end..
"Of course not,"
The wrap-around hospital gown was raised with little concern for modesty. My lymph glands were felt by all, and then my inflated spleen was examined with a wave-like thrust of finger tips. It was obviously swollen, I hadn’t known. A short discussion in highly technical language followed, and then the inquisition began.
"When did you first get these symptoms?" "How old are you?"
"How long have the spots been there?" They were flying at me from all sides. "Tell us about your family."
I answered as best I could, and was interrupted at regular intervals by an assortment of other questions. Satisfied with the interview, the group swept back into overlapping conversation and retreated down the aseptic hall.
The outwardly detectable signs at that time were those which had brought glandular fever to mind - suspiciously like those which my good friend Murray Whitelaw had complained of during
his recent bout of that disease. But these people had known that it was more serious than that.
I was to be examined several times throughout the day.
Following another blood sample taken in the ward, the experts were sure that they had correctly diagnosed the problem, and my parents were informed around lunch time on that first day in hospital. One final test was required, the dreaded bone marrow biopsy, scheduled for the Monday, but its results were not likely to change anything.
The events of the day had swamped me. I was confused and worried. When a bespectacled, distinguished looking man entered the ward, flanked by his understudies, I knew that the moment of truth had arrived. In the even fluorescent light, I searched his eyes for answers.
" ... and finally we can be fairly certain that you have leukaemia."
I waited for a layman's description and a prognosis.
The word itself had not registered with me, but the expression on my father's face, which I glimpsed as he moved past the hall window, gave rise to grave concern from deep within. I knew his understanding of the term was far better than my own.

" ... there is a disorder in your blood involving the white blood cells, ... You will have to stay with us for six to twelve weeks ... chemotherapy, radiotherapy ... "
I tried so hard to concentrate, but I was tiring badly. I remember thinking that my heart was pumping at an incredible rate. Several courses of drugs were to be administered with the aim of retarding the proliferation of the white blood cells to the point of controlling them, and then eliminating them.
" ... but the important thing is that we will cure you."

It was the type of commitment that I had been waiting for.

Perhaps he said that he would try to cure me, or maybe in some other way my hearing was inaccurate. But at the time, I felt that I heard what I have recorded above, and the effect of this could not be underestimated. At that very moment I was at ease with the situation. And through the difficult times that followed, the echo of this statement, and its implications in my mind, served as a rock-solid foundation for resurgences of faith and confidence in the struggle for good health.

I was going to get better. My rigid body could relax.
Tension receded in waves as I contemplated my future. My life was not being threatened, or so I thought, and a short stay
in hospital couldn't do me too much harm. I was blissfully ignorant of leukaemia's effects and reputation.
This was, in retrospect, quite lucky. Real depression was a long way off.
The remainder of the weekend holds little memory for me. Dad drove me back to the hospital on the Sunday evening a we talked of the weeks to follow.
Later, I came to realise that Dad would not have known anyone who had survived this disease. He definitely was more afraid than 1. “How did my son contract this? Is it in the family? Is it something we’ve done or been?”

I must, at this, point attempt to describe why the bone marrow, biopsy was so dreaded.
Blood testing was extremely common throughout my period of treatment, and became a comparatively minor inconvenience Every visit was accompanied by this jabbing. The bone marrow biopsy was the only facet of the treatment capable of producing real pain, and was never volunteered for.

The bone marrow nestles in the hollow of the bones and a major site for the production of blood cells. It is here that cancerous cells were formed, so its examination is vital in determining the progression, or otherwise, of the disease. Valuable it may be, but easily accessible it is definitely not.
The two places large enough to supply adequate samples, and yet close to the skin, are the sternum or breastbone, and the upper portion of the pelvic in the lower back. In my case, the pelvis was the region often used for this testing.

My first experience of this procedure was unforgettable and the least painful - psychological preparation by nurses who were familiar with potential for pain, the disorientation of awakening to artificial light in the ward at some unearthly hour, the sense of fear as I was wheeled on a trolley to the Haematology Procedure Room, and then my first general anaesthetic.
As the milky fluid slipped silently into my vein, I followed the direction of counting upwards from one.
"One ... two ... ," in my nervousness I had focused on the miniature holes in the ceiling, and they had become the subject of my count. Consciousness was lost quickly.

Reality eased back some four hours later, as I awoke to the minor discomfort of a dull ache, and a rather clumsy plaster bandage adhering tightly to my back. It was lunch time on the Monday, and I wondered what all the fuss had been about. Of the many times that I was to have a bone marrow biopsy, this was one of only two completed with the luxury of a general anaesthetic.

Because of its effects, the G.A. is quite unsuitable for any procedure that doesn't allow time for preparation and recovery. All of the other occasions, on which I had the test, were as an outpatient at the Alfred, very early in the morning. I couldn't afford to lose a whole day, so that was when the biopsy became quite menacing.
I shall describe a typical experience.

The bone marrow biopsy was immediately preceded by the extracting of an extra-large sample of blood from those oft¬ punctured veins, quite noticeable in the front of my elbows. Before the punishment they endured led to the excessive hardening of these vessels in my right arm, the veins would readily stand to attention after the application of a tourniquet. Much of the sample was sent to research teams.

The attending nurse had the task of making me comfortable as I removed my shoes, loosened my trousers, took up the foetal position on the trolley, and began to really panic. Cold antiseptic chilling of the skin of the lower back was the sign that the procedure had begun. While I waited for this cue, I had to endure the tormenting sounds of preparation - metal on metal, the sucking syringe draining the sealed vial.

"First a cold wash," whispered the nurse.
The expression on her face was that of concern, as she held my arm and hip with reassuring strength.
"Just a small pricking pain," followed the doctor as he injected sufficient anaesthetic to deaden feeling from the skin in the region to be penetrated. I always found this pain to be sharp, because I was concentrating so hard, and also because the needle was being moved under the skin to spread its effects as widely as possible.
"Ouch!" A low, quiet grunting. I had to make some reaction, and this seemed the least offensive alternative.

The real discomfort was soon to follow. The bone being sampled is filled with nerve endings, still able to transmit messages of pain to the brain. It could not be anaesthetised, yet it was the real site of disturbance.

Blood fled from my knuckles, as I clasped the back of my knees raising them to within a short distance of my chin. In this position the back feels extremely vulnerable. When the effects of the injection were obvious, the task confronting the doctor was to physically push a long, thin, hollow and cylindrical piece of stainless steel through the skin and underlying tissue.

Then through the outer surface of the bone, into the soft region where bone marrow is found, went the instrument. Al this stage the nurse was required to supply an opposing force strong enough to prevent me from being pushed off the table Into the hollow of the apparatus was slid its partner in crime another long, thin, steel rod which fitted so snuggly inside the syringe providing the suction needed for the removal of the marrow.

The initial penetration was only moderately painful but this was horrific. I could feel the slow trickle of blood escaping the wound in between many violent suctions which racked the body with pain. Here it became difficult to restrain the urge to scream. The tension in my jaw muscles was incredible. During a lull the nurse spoke.
''That should do it. Are you O.K.?"

Her touch and her expression were genuinely warm. She knew of the pain, but also the necessity. I could hear the doctor smearing. the sample over the microscope slides and squirting the remainder into labelled tubes.
I relaxed my rigid body to answer, as she removed her hand from my shoulder. The metallic spear still protruded from my back.
"Yeah." Not too convincing.
In response, a knowing smile.
"I just hope that it is good stuff ... worth the effort." There was little she could say.

One prayed that sufficient marrow had been obtained from the first attempt, but often the doctor had not and needed to draw out some more.
The apparatus was dual purpose, being used while poised within the pelvic bone to scrape from the inside a sliver of bone large enough for examination. This also was a very physical effort for the doctor, and as you would imagine, painful for the patient. But its completion meant the end. Upon application of the covering bandage, I found myself dizzy from the experience covered in sweat, but free from this ordeal for another couple of months.

Bone marrow biopsies are a necessary evil and their results were always eagerly awaited. They left a tender region for several days which only caused trauma if knocked. Later, I was to discover that many of the other outpatients were taking quite strong pain¬killers to make the exercise more bearable. In the majority of cases, they had the rest of the day for recovery from the drugs, so I do not blame them at all.
But the way that I viewed these painful biopsies was that they were not really doing me any harm. They were taking something out that would soon be replaced, and not putting something toxic in! This thought made me feel much better about the whole exercise.

I would return to the waiting room for around 30 minutes to gather my strength and allowing the sweat to dry. I was surrounded by obviously ill patients and several haemophiliacs awaiting their regular transfusions. I was not like them. I was lucky and feeling OK. This would be over soon. Then it was a tram to University.

The innate ability of a hospital to create depression is obviously caused by the varied collection of sick people who attend it. Upon stimulating the automatic entrance doors, the effect was always the same.

Luckily my mother was regularly with me in the first year to give me support and act as a cheering influence. The waiting room never helped the situation, as much time was spent waiting for the call to the "slaughter house", surrounded by people who were obviously ill.

This was even more pronounced at Peter MacCallum Hospital, in Melbourne, where everyone seemed so very sick. I was to go there later for radiotherapy. Thinking back, during that time, I was bald, pale and skinny, so I guess I looked fairly average too.
The city skyline flanked by the magnificent greenery of parklands greeted me, as I moved to the window of my private room at the Alfred Hospital. For two weeks in March 1976, this was
to be my home. The fifth-floor window has a northerly aspect overlooking Fawkner Park with its numerous playing fields ringed by a variety of trees.
I was in the "Leukaemia Ward", where those suffering from the various forms of the disease could be grouped together to allow constant attention by trained personnel. The room was quite large, but bland, so the view was treasured. I was now hopeful that my stay would be closer to six weeks than the twelve proposed by my doctor.
Common sense would dictate that the sooner the treatment began the better would be my chances of recovery, so the decision to start chemotherapy that very day was agreed to by all. It was only three days after my initial diagnosis. Some very toxic new drugs were to be supplemented with carefully directed radiation to my skull. This with lumbar punctures to hit cells hiding in my spinal fluid was the plan to achieve a total eradication of the offending cells. I was told the treatment was new – experimental. Others had suffered relapses from cells that had migrated to the central nervous system where the drugs could not easily penetrate. It made sense.
It worked.

Comments

Life After Leukaemia

Sat, 28 Jul 2007 08:47:09 +0200

Chapter 1
EARLY SIGNS

It was the Summer of 1976 and I felt lethargic in the heat. I left the shade of the classroom with the knowledge that cricket training was to follow. My level of enthusiasm was low.
As I dragged myself from the change rooms to the oval, I noticed two weathered, old eucalypts providing only speckled relief from the sun, and headed straight towards them. Here was the place to take some catches and dodge the hard training.
It was a pity that the coach did not think so.

My thoughts had drifted away when I felt a sickening thud in my left shin.
The pain was sharp. It had not been a glancing blow.
I looked up to realise that I in deep conversation had wandered directly behind the stumps, and into the path of a crisply struck straight drive, that had cannoned into my leg. The ball sat menacingly at my feet. It amazed me that it sat so still after impact.

Thinking back, I've had a bad run with cricket balls. It's such a great game but these rock-hard missiles have since broken my nose, my ribs, and my hand, concussed me twice, and bruised both of my eyes. When an errant hook led to a depressed fracture of the cheekbone it was time to retire.

When I'd finished jumping around, I reached tentatively for my shin. I was shocked to find a tender lump almost the size of the offending ball. The immediacy of the swelling was staggering and clearly not normal.
It was just four days before my sixteenth birthday in February 1976.

"Well fielded," I heard the coach yell from behind me.
He was a slightly built man with a neatly cropped moustache and a retreating hairline.
"Good one!" I muttered under my breath, not appreciating his
attempt at humour.
My leg was throbbing.
After looking at the injury, he was concerned. "You'd better have that seen to."
I didn't need convincing at that stage, so I grabbed my gear and hobbled home. It wasn't that far but I was thirsty and shaken.

It was times like these that I really appreciated having my mother at home during the day. I was in desperate need of assistance when I collapsed through the side door, and into a beanbag.
"What have you done to yourself?"
"Just this," I replied, and showed her my shin. "That doesn't look too good. I'll get some ice."
It was already an enormous lump. It took two hours for the throbbing to subside, even though I had kept the leg almost totally still. It was not the usual reaction from within to an injury of this type.
Worse was to follow.
I was kept awake throughout most of the night, unable to find a comfortable sleep position . The next morning, there was more evidence that something was definitely wrong.

The bulbous lump had a deep-sea blue glow, which seemed to have trickled far into the surrounding areas. From the lump through my ankle, and down to my toes, the area was swollen and colourful.
It was off to the family doctor.
I was instructed to keep the leg raised and because of the extent of the damage, had to do so for the next four days. This was going to be a very uncomfortable time.

The novelty of my situation, which arose from an extremely healthy and active past, quickly disappeared as boredom and frustration set in. This was the era of bikes and Kick-to -Kick when traffic was so scarce that games could be played on the road. The call "car" was enough to move us and it was rare. No helmets, climbing fences to retrieve balls, sunnyboys and five cent bags of chips. A time when neighbours were known and kids could be left to roam then chastised when they failed to return by dark.

On another front valuable time was being wasted. I was a young Year 12 having skipped a level at Primary School. There is still debate in the family as to whether it was my enormous intellect or that there were too many kids which led to me skipping a grade. Turning 16 in Year 12 was still very young. I was missing classes.

The celebration of my birthday was the traditional family gathering at my late grandfather's property, tucked inoffensively into the magnificence of Sherbrooke Forest in the Dandenong Ranges. It was a smallish, fibro-cement construction on a half ¬hectare block. It was a forest hideaway that hosted so many great days. Now I recall the nights when my older brother Gary and I slept in the bungalow in the back yard. Some of the noises of the forest can be very scary to youngsters, as my father well knew. So on occasions, he would lie in wait in the darkness, before lobbing' stones and branches onto the corrugated iron roof, knowing that we would be terrified. His laughter in the distance often gave him away.

So it was my sixteenth birthday. On this day, none of us suspected that my colourful injury was anything more than a relatively bad cricket accident, so some expressed sympathy and concern, while others accused me of "wimpishness". Anyway, my injury saved me from chores. Now was the time to sit back, and enjoy. I was oblivious to the fight that was raging inside me.

Isolated incidents, not threaded together. Several abnormal events had occurred prior to my diagnosis, all of which can probably be attributed to the one disorder. But no-one, least of all me, seemed to be able to suspect a link. In each case I either dismissed them as insignificant myself, was reassured by my parents, or we sought a medical opinion.
The problem was that the symptoms had to become quite major before anyone understood the seriousness of my illness. And it was well known that the earlier a cancer is detected, the better the prognosis. Still, people who always suspect the worst would lead very sad and stressful lives. I feel sorry for anyone like that.

My mind traces back to a football encounter against Marcellin College in the winter of 1975. It was a sunny, but chilly morning, and a strong wind kept all of the play at one end of the oval.
In the midst of a scrambling pack of players, a teammate reared sharply backwards with the ball. It caught me totally by surprise and the back of his skull crashed into my right eyebrow. I knew immediately that it was a decent whack, and I expected a swollen and blackened eye. But before I had even lost my dizziness, my eye was almost completely closed over.
I had only played for ten minutes and I had to sit out the rest of the game on the bench. It had been a long bus trip for two touches of the football.

Again the bruising was excessive and extraordinarily long lasting. This would suggest that the leukaemic cells were already present, and in high numbers. Under their dominance, the number of platelets in my blood had dwindled significantly. They were no longer effective.
I sat in silence on the bus trip home.
"How'd you go?" was the question my brother Dale asked, before his view was focussed on my face.
"Didn't last long!" I muttered, as I dodged past his fits of laughter, towards any mirror I could find, and a couple of aspirins.
The lounge room mirror shocked me. Sometimes a black eye can add a bit of character, but this one definitely did not. Throughout the afternoon, a stream of blood meandered across the white of my eye, and it was several weeks before the last yellowish remnants drained away.
Injuries which occur in such a sport have to be accepted and overcome.

A bruised eye is a relatively minor injury and under normal circumstances is readily forgotten. Get on with it. Australian Rules is a great game, and my father, Ken Reed, played the sport at the highest possible level with both the Essendon and Williamstown Football Clubs. Even though I didn't inherit all of his natural ability, enough sneaked through to make my time in junior teams quite successful and most enjoyable. I remember that a player in one of the other teams at the football club died of leukaemia at about thirteen years of age. I did not really know him, nor did I know what the disease was. Either the explanation was beyond me, or I hadn't bothered to ask.

The compulsory lay-off I was to have from football was a time of great frustration. I have since made several unsuccessful attempts at a comeback, but with each match came the painful realisation that my body was no longer conditioned to the physical contact aspect of the sport. On the other hand, it is impossible to adequately describe the thrill I have experienced at actually having the opportunity and the good health to try.

Back to those symptoms and the summer of 1975/ 76. There was still no real suggestion that my life was in danger.
A day at the Melbourne Cricket Ground, Test Cricket and a full day in the heat. I felt drowsy, and the excitement of the crowd when willow met ball was merely a background murmur. I had developed an insatiable thirst which could not be explained by the heat alone.
"Coke, please," "Make that two cans!"
It had become a familiar path to the drink stand. Nine cans of soft drink was an abnormal amount to consume, and still the thirst returned. When I arrived home, I sat lethargic and silent. Then following several glasses of water, I threw myself onto my bed, and readily sank into a deep sleep. Something was definitely amiss at this time.

Occasional runs of about five kilometres in distance kept me fit - fit enough I thought. Throughout January and February, these jogs became almost impossible.
My earliest memories of jogging are of wintry black mornings, with my father and older brother Gary. It seemed a ridiculously long six ¬kilometre run along a set course through Cheltenham and Mentone. Enthusiasm never came easily at pre-dawn times of the morning. Dad's coaxing was essential for me to even get out of bed, let alone complete the course.

Those warm nights in the earliest months of 1976 were an enigma to me. To my repeated disgust, each time I set out on a casual run, I was forced to stop abruptly. The cause was an incredible pounding in my temples.
"Won't be long," I remember saying to Mum, not realising how true this statement would be.
"Be careful," replied my mother.
The throbbing pain was upon me before I'd rounded the second street corner. It came in regular waves of increasing intensity forcing me into a hunch awaiting its end. I had aimed to make it to the beach.
My reaction was foolish, stemming from my basic ignorance of the cause. It is possible to overcome some aches and pains by battling on regardless. I tried to continue, hoping that the pain would not return.
Of course it always did.

By this time, the leukaemia had established a solid foothold in my body. The proliferation of white blood cells. The effects on so many systems. I walked defeated along the pathway home, feeling confused and disappointed.
I remember Dad looking up from behind his paper as I walked past. He was not aware that I had been gone no more than fifteen minutes. A pathetic effort.
"Did you get far?"
"No. I'm feeling too tired to run," I replied, then sat for a moment.
I was puzzled by my inability to run, but couldn't blame illness, so my lack of fitness had to be at fault. I realise now that I was badly anaemic.
I left the room a worried young man. The perspiration on my brow was not the result of exercise.

It was early in February 1976, and I was trying to adjust to the demands of senior schooling. My nervous habit of unconsciously twirling my hair was in full swing, as I was engrossed in study.
On this normal morning, in the School Library, my probing fingers discovered two unusual lumps in the back of my neck. It was at this moment that I first feared a terminal illness, although my diagnosis was incorrect.
I felt the lumps in all possible ways. My mind was racing.
The possibility of these lumps being glands never entered my mind. The more I felt them, the more I became convinced that I had two massive blood clots, swimming upstream to my brain. I was certain that I could feel them moving. I was incredibly scared.

What were my options?
No matter how hard I tried, I couldn't think of a straightforward, logical explanation. And I was too terrified to sit in silence.
I would make a run for it.
I waited for the librarian to be distracted by another student and then bolted through the open door. I hurried home.
My mother pointed out that the lumps were lymph glands, and while she pondered possible causes, I felt enormous relief.
What could it be? A forty-eight hour viral or bacterial infection. These possibilities were not too scary to me, especially because I had thought that these lumps were about to invade and destroy my brain.
At last I had a symptom major enough to warrant a more thorough search for the real cause of the problem. The swelling of my leg had all but disappeared, leaving a circular scar which still persists today. I was only aware, at that time, of the swollen glands throughout my body, and a general listlessness.
Glandular fever was thrown into the mix, so a blood test was ordered. This did not seem to be too bad. We had all known people who had Glandular Fever including my sister Linda. It would set back my work though.

February 28, 1976. I could never forget this date.
The examination of the sample of my blood revealed, to the experts, a drastic imbalance in my blood. Far too prolific were the white blood cells, at the expense of red blood cells and platelets. This had caused a variety of symptoms including some that were a surprise to me - such as the swelling of the spleen; the enlargement of the other lymph glands of my neck, armpits, and groin; and some nasty red spots which suddenly appeared around this time.
I was in a far worse state than I could have imagined.

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