lungevitystories
Stories of hope from people
touched by lung cancer
An initiative of The Australian Lung Foundation
Contents
1
Foreword
2
Introduction
3
Participants
4
Personal stories
4
7
9
10
13
14
17
20
22
24
27
29
31
33
36
38
39
42
44
47
52
54
56
Ros
Barbara
John
Coleen
Helen
A family’s journey: Michael
Irene (Michael’s wife)
Amber (Michael’s step-daughter)
Alec (Michael’s step-son)
Gay
Felicia
Jamie
Kathleen
Lynda
Bruce
Natalie
Lesley
Barry
A family’s journey: Maggie
Linda (Maggie’s daughter)
Phil
Cornelius
Elizabeth
60
Healthcare Teams
65
Helpful information
60
61
63
Dr Nick Pavlakis
Mary - Nurse
Rosemary - Lung Cancer Support and Information Group
Foreword
In our world, there are many purposes for stories. Some are
pure entertainment and we enjoy them for what they are worth.
Others leave us with a simple admiration for one or a series of
achievements of an individual or a group. Traditional storytelling
has a further role in all cultures. Well-used, it helps us with a
structure, strategy and enhanced confidence to deal with future
events that previous, personal experience can never equip us for.
The telling of the story and the reciprocal appreciation of its value
are glue for the fabric of our essential humanity. If, within these
stories, you find only entertainment or inspiration, the stories will
have served you well. I suspect, however, that the more lingering
effects of reading these shared stories will be respect and
admiration for the storyteller and thankfulness for the guidance
and inspiration that each story provides.
Associate Professor Matthew Peters
Respiratory Physician
Head of Respiratory Medicine, Concord Hospital, Sydney
Chairperson, Kylie Johnston Lung Cancer Network
1
Welcome
Welcome to Lungevity Stories 2009. If you or a loved one
has been diagnosed with lung cancer, it is likely you have
been provided with basic information detailing the condition,
possible treatment options, and general statistics.
The aim of Lungevity Stories is to offer an additional and slightly
different perspective by sharing the personal experiences of others
on their own lung cancer journey.
It is a book specifically written for you by others who understand
some of the things you may be experiencing.
Numerous survivors and carers have generously shared their stories,
with the hope of helping others from their own experiences.
We have also been fortunate enough to receive stories from a leading
medical oncologist, a specialist lung cancer nurse coordinator, and the
facilitator of the most successful support service group in Australia. All
of these experts have been generous in hoping to share insights from
the many patients they have cared for over the years.
You may find that the honesty of some of the stories shared difficult
to read, however the resounding message from every single story
is one of hope and persistence. As there are numerous stories, you
may also find it easier to absorb them properly by reading them in
sections of four or five stories at a time.
We hope Lungevity Stories 2009 offers a practical, inspiring, and
real voice for lung cancer survivors. Best wishes to all in your
individual journeys.
2
Thank you
A special thank you to all participants for sharing their
stories and for their willingness to be a part of the project.
Ros
Barbara
John
Coleen
Helen
Michael
Irene
Amber
Alec
Gay
Felicia
Jamie
Kathleen
Lynda
Bruce
Natalie
Lesley
Barry
Maggie
Linda
Phil
Cornelius
Elizabeth
3
Ros
Ros, 62 • West Pennant
Hills, NSW • Diagnosed
It is a privilege to continue my story in
the second edition of the Lungevity Stories.
Before I begin I want to respectfully remember
my friends who featured in the first edition
and acknowledge their contribution and sad
loss to the Lungevity family.
a five year
I write my story this time as a journey
of
l
hel
one
n
bee
survivor. It has
re with you.
and one I would like to sha
I write my story this time as a five year
survivor. I reached this “landmark” on 27th
August 2009. When I was diagnosed in
August 2004, the percentage of being a five
year survivor was around 3-5%. It has been
one hell of a journey and one I would like to
share with you.
My name is Roslyn Hogan, I am 62 years
old, have two sons aged 36 and 34 and a
beautiful 28 year old daughter. My gorgeous
husband and I celebrated our 40th wedding
anniversary earlier this year. I am a life long
non-smoker, as is everyone in my family
– so a stage 4 non- small cell lung cancer
diagnosis came as a complete shock. I was
fit, healthy, strong and attending at least eight
exercise sessions each week. I was not even
sick. My aerobics instructor suggested I have
a check up when she noticed my breathing
was not returning to normal at the end of a
workout.
My GP told me I was the fittest person he
knew, checked my heart and sent me home.
It was another five months before my perfect
world was turned upside down. The first
oncologist I saw told me I was terminal,
gave me a graph showing the statistics of
4
in August 2004
my disease and explained that I may not see
Christmas and definitely would not be sitting
there in two years. I left immediately thinking I
would have to find a doctor who would treat
me like a real person and not just a statistic.
The next oncologist came recommended by
a friend and I met with him the next day at a
small private clinic, and whilst he didn’t offer
me a cure, he did make me feel welcome
and comfortable.
I commenced chemotherapy immediately.
I was terrified and still in shock from my
terminal, non operative diagnosis. I continued
this standard protocol treatment still in shock,
still in my trackies and ugg boots, through
until Christmas before a scan revealed some
shrinkage. It was April 2005 when my bloods
and scans indicated this chemotherapy had
stopped working for me. I was sent home to
“wait and see”.
What was I waiting for? To see when the
cancer would spread throughout my body?
I could not sit at home to “wait and see” so I
went to Mexico for some alternative treatments.
This was to be the turning point for me, both
mentally and physically. I spent eighteen days
at this extremely professional, clean, caring
hospital with my husband. I am not walking
this road alone and for that I am grateful.
My oncologist did not approve and told me
“desperate people do desperate things”!
I came home empowered to be totally involved
in my treatment. I became an active, interested,
intelligent, resourceful patient.
I commenced my second line chemo in August
2005 and by now my oncologist knew how
much I loathed the term “standard protocol” so
he treated me with an alternative chemotherapy
option, and now four years on I believe this
is the reason I am still here today. It was very
easy, had no side effects for me and gave me
fifteen months of near normal life. I experienced
considerable tumor shrinkage, my CEA blood
marker was at its lowest, and I felt good.
At this stage I felt I could do more and I
started seeing a Chinese doctor at Ryde.
He told me he could ‘wake up my immune
system’ with acupuncture and make it ‘fight
the bad guys’. He would give me a strong
immune system which would support me
through chemotherapy, along with traditional
Chinese herbal medicines. He insisted I follow
a strict diet – no dairy, meat, alcohol, coffee,
sugars. I eat organic, one litre of vegetable
juice daily, fish, fruit and lots of vegetables.
He also added fifty pills per meal (added to
the ten per meal from Mexico). I swallow
180 pills per day plus ten crushed apricot
kernels per meal. I have followed this regime
of food, pills, juice, for the past four years
now. I visit him weekly and he has become a
vital and very necessary part of my treatment
plan. I am blessed to have found him and
look forward to his positive and encouraging
comments each week.
ent I was still
Two years into my treatm
rted attending
sta
I
s.
searching for option
Group.
ort
pp
Su
r
nce
Ca
g
Lun
a
Two years into my treatment I was still
searching for options. I started attending
a Lung Cancer Support Group which was
something that I had not considered before,
but I did not want to leave any stone unturned.
It is a very comfortable, caring, small group
of both patients and facilitators who listen
and share their most confronting concerns
and treatment issues. It has also allowed me
to give some hope to those patients who
believed a two year survival to be impossible
to achieve. It was when the friends around me
continually passed away, together with the
friends I made through the Lungevity group,
that I needed to step back a little and get my
mind in a more peaceful and positive position
so that I could continue my own fight. I visit
the Support Group occasionally and worry
continually that I have let the group down.
It is a very personal, peaceful and reflective
gathering and I think it is so important for
those of us on this journey.
During this period I sought out second and
third opinions. I thought it was important
to see an oncologist who specialised in
lung cancer. I was searching for new drugs
and treatments available here in Australia. I
gathered much information and knowledge
and I gained much hope from professors at
both Royal Prince Alfred (RPA) and Royal
North Shore (RNS) hospitals. I learnt so much
my head was spinning. What next!?
For my third line of treatment, I enrolled in a
clinical trial. I started in January 2007 and by
April 2007 my scans showed that my disease
had progressed and I was removed from the
trial. This was a crushing disappointment as I
was considered to be the perfect patient for
this trial. I had my original biopsy re-examined
and my biological markers indicated the
treatment should have worked for me, however
it was unsuccessful – my tumors had increased
in number and size although, thankfully, still
contained in my lungs.
I celebrated my 60th birthday in March
2007. I requested no presents but instead a
donation to The Australian Lung Foundation.
My much loved family and friends supported
me in abundance and showered $30,000 very
generously for research into early detection of
lung cancer.
I started my fourth line of treatment two
weeks after I was removed from the trial.
After talking with the very professional lung
cancer oncologist at RNS, I was convinced
I needed to try two concurrent treatments. I
wanted to try both at once and not “wait and
see” if one treatment would have worked by
itself. So in May 2007 I commenced infusions
5
of both therapies at 21 day intervals and this
combination has kept me stable for over two
years now. I have no side effects from the
treatment itself however the dexamethazone
causes me much anxiety for a few days and I
experience puffiness and swelling throughout
my feet, legs, knees, face and hands.
earch
My passion remains for res cer.
can
g
lun
of
ion
into early detect
I support the wonderful work of The Australian
Lung Foundation and as a result of their efforts
to educate and inform both patients and
professionals in the care of lung cancer, I have
been able to talk with Professor Tony Mok from
Hong Kong, Dr Paul Bunn from University of
Colorado Cancer Center and Dr Roman Perez
from the Einstein College of Medicine in New
York – all three eminent and tireless workers
for lung cancer.
My passion remains for research into early
detection of lung cancer and it was with my
donations and the very generous Australian
Lung Foundation contributions, that the Roslyn
Hogan Research Grant for Early Detection of
Lung Cancer was established in August 2008.
for
We already have screening
and
al
vic
cer
te,
breast, prosta
lung?
bowel cancers - why not
I was honoured to present Dr Daniel Steinfort
from Melbourne and Dr. Phan Nguyen from
Brisbane a three year scholarship for this
purpose. It is my hope that because of these
two brilliant doctors we will one day establish an
early detection program so that lung cancer will
be detected long before it becomes a stage 4
incurable disease. We already have screening
for breast, prostate, cervical and bowel – why
not lung? After all, it is the biggest cancer killer
by far.
6
I proudly hang an Australian Lung Foundation
Volunteer of the Year Certificate in my study
but really, it belongs to the fantastic dedicated
doctors and nurses who work so tirelessly
to help those of us who are walking this
unforgiving journey.
What’s next for me is a mystery at the
moment. While my current treatment holds
me in a stable condition I will continue with
it, however I am constantly looking for what
my fifth line of treatment (7th chemo) will be.
I research the net constantly but as a result
of the trial failure, I have become ineligible
for most of the new trials. There appears to
be no interest in making a trial available to
someone who is looking for chemo number
seven. I have simply outlived all expectations.
The past five years has given me time to
prepare and plan and has also allowed me to
see my second son and only daughter marry.
I have met two new grandchildren – Murphy
and Hawkesbury and celebrated 40 years of
marriage to my childhood sweetheart, all of
which seemed impossible at diagnosis. I still
exercise regularly, mind grandchildren, and
enjoy holidays and lunches with family and
friends. I remain an interested, active and
intelligent patient who refuses to sit around
and “wait and see” and my doctor will never
send me down the “standard protocol” path
again. I respect and admire him immensely.
Everyone faces their challenges in many
different ways, some go down the
chemotherapy path, some find the diet too
difficult, many find there is no place for
alternative treatments (acupuncture and herbs)
while there are those who only believe in
western medicine. I have chosen what I feel is
the complete package for me and I attribute
all of this to my continued good quality of life.
However, we are all individuals and must make
our own life choices. A safe journey to all.
Barbara
a Park, NSW
Barbara, 69 • Yarrawong
• Diagnosed in 2004
Early in 2003 I was feeling unwell with pains in
my right breast and across my back. I always
seemed to have the flu. My GP finally sent me
for a mammogram and blood test despite the
fact that I had regular mammograms because
there was a family history (two aunts) of breast
cancer. Nothing had ever shown up in these
previously.
When I went back to my GP for the results, I
was told I had whooping cough, to go home
and isolate myself and expect a call from
the Health Department. I did this and the flu
symptoms seemed to improve.
The pain symptoms, however, still persisted. So
I went back to my GP and was sent for another
mammogram and an MRI the same day.
The results came back and I can still see my
GP, after reading the first part of the report
that said nothing showed up, telling me to
go home and get on with my life as though I
was imagining everything. He treated me as
though I was making it all up.
He told me to go home and
ugh
get on with my life as tho .
ing
ryth
eve
I was imagining
I continued to suffer with pain and the
recurring flu symptoms until 2004. One
afternoon I was feeling so bad I rang the GP
for an appointment and was told he could
not fit me in for some time. My husband was
so concerned he took me to his GP and I
explained all I had been through in the past 12
months. This GP sent me immediately for an
x-ray. The next morning he called and asked
me to come to the practice that day. He told
me he didn’t believe in hiding things and that
I had lung cancer. I was astounded as I had
always expected it would be breast cancer if
I ever got cancer! He asked me to bring in all
my previous x-rays etc for him to look over.
Not having ever looked at these reports I was
maddened when I looked at one of them from
2003. At the bottom of the report it advised
the doctor to check on a small spot on my left
lung in six weeks. In the 12 months since it
had grown to 5cm.
My new GP took action immediately and within
three weeks I was in and out of hospital having
had part of my left lung removed. Whilst I was
in recovery I met a man who had come back
for treatment after five years. His advice is with
me always. This is the story:
Following my surgery, the surgeon said he
had good news; that he had taken away
all the trouble and was happy to say that I
didn’t need chemo or radiation (something I
had never even thought about!). He said he
would give me at least five years to live. Then
he went to see the man next to me and said
that he was sorry, there was nothing he could
do for him and that he should go home. His
response was “At least I’ve had five years
grace”. Then he said to me, “Barbara, I’ll tell
you something – the squeaky door gets the
oil. So remember that”. I took in those words
so that when I was leaving the hospital I made
sure I got as much information as I could about
what to expect.
7
So my husband and I started doing things we
have always wanted to do including a trip to
Europe - seeing London, Paris, Belgium and
many other wonderful places. I went to my
regular check-ups and things were good for
four years.
d doing
My husband and I starte
nted to
wa
ays
alw
things we have
e.
rop
Eu
to
trip
a
ing
lud
inc
do
Then the pains returned, but on the opposite
side of my body. Despite many x-rays nothing
seemed to show up so I was told they were
pretty sure it was scar tissue and not to worry.
I was put on a continuous course of painkillers
which I took for many months.
Still feeling unwell, I remembered the man’s
words about the “squeaky door” so many
years ago. I didn’t care if the GP thought I
was imagining it. I knew my body and knew
there was something going on as I was
getting pain with no escape. So once again,
I saw another doctor and he suggested I
should have a PET scan.
Bingo! The cancer showed up again, this
time in my right lung with a few spots in my
upper chest. I was told they were very sorry
and would arrange for me to have chemo.
As there was a waiting list in my area, I opted
to travel to Sydney for treatment even though
this meant a four hour round trip by car with an
overnight stay to ensure we didn’t get caught in
traffic. One of my daughters, who was with my
husband and me when we made this decision,
said to the doctor that we wanted the best
treatment. I cringed when she went on to say
that money was no object and I had to start
treatment immediately.
After telling my family that the cancer had
returned they were even more shocked than
the first time. They didn’t understand why I
had it when I had never smoked, ate well and
looked after myself. I must admit I felt the
same, however at this time I was told I was
8
going to be a great grandmother so I had to
“hang in there and not lose faith”.
So I commenced treatment at the Northern
Cancer Institute with wonderful caring people
and doctors. They helped me through
and made everyone feel special, not just a
number. My husband and I would travel to
Sydney the day before I was due to have
treatment but often I had to be sent back
home as treatment had to be deferred. After
many attempts I was taken off chemotherapy
and put on an oral cancer therapy, which
seems to be working wonderfully for now.
At this time I was also secretly nominated
and then voted a NSW state finalist in the IGA
Local Heroes competition for my ongoing
charity work in regional and rural areas.
I feel much better these days. There are a
few side effects for me especially with my
immune system. I suffer with infected nails,
ulcers in my mouth and bad eyes. BUT, hey, I
can cope with all of that as long as I’m alive!
my
This cancer has brought
er.
eth
tog
ser
clo
n
childre
It has been 12 months now since that second
diagnosis. I have my days, but at least I have
seen my grandchildren be successful in their
various endeavours, trades and studies. I’ve
celebrated the birth of my great granddaughter
and most recently taken three generations
of all the family for a special holiday in Bali
together. This cancer has brought my children
closer together. Apart from all of that my truly
supportive husband and I have celebrated 52
years of marriage.
I know that by being that “squeaky door” and
digging in about knowing my body I have
gained a few years reprieve.
My inspiration during all this time has been
my oncologist who is always there to offer
help and advice whether at the end of the
phone (when I have lapses) or in person for
my regular visits.
John
4
a, NSW • Diagnosed in 200
John, retiree • Naraween
As told to The Australian Lung Foundation
John Short is a retiree with a love of touring
the New South Wales coastline in his caravan.
Five years ago, he found he was wheezy
and breathless and went to his local GP for a
check up. His GP put the symptoms down to
probable asthma and prescribed him a puffer.
“It wasn’t until I went to the Jenolan Caves
and found that I wasn’t puffing as I walked
up the 900 steps underground that the alarm
bells went off,” John said. “When I got home,
the puffing started again.”
John ended up at a lung specialist with x-rays
and was told he needed a bronchoscopy to
remove polyps.
The surgery was successful but a growth was
then discovered on his left lung. This growth
was found to be a non aggressive carcinoid
tumour on his left lung and 90% of his wind
pipe was blocked.
“I then had surgery to remove my entire left
lung,” John said. “I didn’t need any other
treatment – I just had to have follow-up check
ups for some time.”
“I was in intensive care after the operation for
a short time – I had to walk the fire escape
stairs for rehab before I was discharged.”
“I’ve now been cancer free for four years. I
still live an active life with one lung – my upper
body strength is weaker but I still enjoy walking
and we continue to enjoy caravanning holidays
in the Hawkesbury region where we have a
stationary caravan set up.”
for 4 years.
I’ve now been cancer free one lung.
h
wit
I still live an active life
“My wife and I teach scripture every week to
students at the Manly West Public School in
Balgowlah. We have been teaching scripture
for around 15 years and my faith has helped
me deal with the challenges of lung cancer.”
While in recovery, John received a special
get well card from all his scripture students
and the teachers at the school. The school
consistently kept in touch with John’s wife
during his treatment.
l with
My faith has helped me dea cer.
can
g
lun
of
the challenges
John felt very touched by the love and support
the school community extended him during his
battle with lung cancer. His friends were very
supportive during his illness and his doctor was
very thorough.
9
Coleen, 60 • Bundoora,
Coleen
VIC • Diagnosed in July
Hi, my name is Coleen and I was diagnosed
with lung cancer almost three years ago. At the
time I was 57 years old, married to Michael for
35 years with two wonderful children, Jamie
(29) and Tamsin (27).
Michael had taken early retirement but I was
still working part-time and loving my job as
a midwife. My daughter is a doctor and on
that fateful day in July 2006 I asked her about
a lump I could feel in my neck. It was one
sided and I mentioned it as a curiosity only.
“I’ve only got one gland up but could it be an
infection somewhere?” After feeling my neck
she said “We need a CT scan”.
Thank goodness we are a family who visit
regularly and talk, talk, talk. That brief
conversation is probably why I am typing
this now.
The CT result two days later showed advanced
inoperable stage 3B cancer in the upper right
lung, mediastinum and supraclavicular node.
If I hadn’t mentioned the lump it would have
continued to spread unchecked. A PET scan
excluded any other sites. I was admitted to
hospital for a bronchoscopy and biopsy of the
palpable lump. The result was inconclusive so
then I had a needle biopsy of the main tumour
under CT guidance. The result was non-small
cell lung cancer (NSCLC).
For days I only had to glance at my husband
and children and they would burst into tears. It
seems the only one who wasn’t crying was me.
I felt completely well. Not one single symptom
which could make me feel less than 100 per
cent. I was walking kilometres every day, eating
10
2006
and sleeping well, and had given up smoking in
1992. How could I possibly have lung cancer?
Our computers ran hot. The research and
discussions went on day and night. Both
kids took time off work and became very
knowledgeable about all aspects of lung
cancer and its treatment. My computer was
busy too. Sending emails to relatives and
friends plus searching for positive sayings I
could print out, pin on a notice-board and
look at.
It was exactly a month before I commenced
treatment. It seemed like forever but my
medical oncologist and radiation oncologist
wanted the treatments to run concurrently
and everything had to be absolutely spot on
before they started.
nt “we can
The doctor’s initial comme
clear.
and
d
lou
s
cure this” still ring
My radiation oncologist had studied my scans
and at my first appointment inspired me with
his confidence. Although he discharged me
from his care over two years ago his initial
comment “we can cure this” still rings loud
and clear.
My medical oncologist has also been wonderful
- professional and knowledgeable on the one
hand, but displaying the utmost caring and
compassion on the other. On my first visit after
being widowed, he was about to sit down when
he changed his mind and instead came round
my side of the desk and sat in the chair my
husband used to take. I trust him with my life…
literally.
While on this tack I must mention the chemo
and radiation nurses. They are truly special
and I am forever thankful for their gentleness,
hugs and humour.
I completed my initial treatment of five weeks
of radiotherapy plus chemotherapy with
minimal problems. As the weeks went by I
did find the radiation burns to my throat and
oesophagus harder and harder to deal with.
Swallowing anything, even my saliva was
painful. To eat anything at all I would first have
to swallow an anaesthetic gel. I dropped two
dress sizes before I was comfortable eating
and drinking again.
I was just beginning to regain weight and had
fine fluff on my head when I commenced my
second line of chemo in November 2006.
The hair loss with this was more dramatic as
I also lost my eyelashes and eyebrows.
I became neutropenic (low white blood
cell count) and on Christmas Day 2006 I
was admitted to hospital with a very high
temperature which was eventually diagnosed
as PCP pneumonia. It took quite a while to
recover from this but I was home again on
January 9th. I had been allowed day release
on January 6th to attend my daughter’s
wedding complete with oxygen cylinder,
PICC line and atrocious oral thrush which
prevented me from eating the delicious meal
at the reception. Thrush doesn’t stop you
feeling hungry it just makes your mouth so
dry everything feels and tastes like cardboard.
On the way back to the hospital we called in
to McDonald’s and I got a large thick-shake,
which in essence was my wedding meal.
Since my final chemo on 25th January 2007 I
have not had any other treatment. The tumours
have shrunk and although x-ray and scan
results always mention radiation damage they
also have the magic words “No Evidence of
Disease”. My oncologist says six months is
soon enough for my next review. I’m happy
with that.
The up-side of living with a cancer
diagnosis
Although anyone with cancer would rather
not have it, there are some things that I am
very grateful for, which I wouldn’t have had
otherwise.
I have learnt to say and write what I feel
rather than just thinking it. My family knows
how much I love them. Even my brother with
whom I had infrequent contact before now
visits and emails regularly.
cer would
Although anyone with can some
are
re
the
it,
e
hav
not
rather
for, which
things I am very grateful
erwise.
oth
had
e
hav
n’t
uld
I wo
My friends know how much I value and
appreciate them no matter which country they
live in or how often I see them. I have had lots
of friends and relatives visit from both England
and America, which is wonderful. My Australian
friends are my angels.
My Mum seemed to minimise my illness.
She had an inexplicable belief that I would
be alright. I thought she was just burying
her head in the sand or in denial but now I
wonder… ‘There are more things in heaven
and earth, Horatio.’ She regularly tells me that
she loves and appreciates me.
I have travelled more in the last two years
than the ten years before that. One truly
memorable holiday in 2007 was with
my husband, both our children and their
spouses. It was a memory making trip to
sustain those left behind after I was gone.
The following year I lost my husband suddenly
to pancreatic cancer. Thank goodness we
went and we have beautiful memories and
photos.
I have learned that ‘things’ are relatively
unimportant and my belongings have and
are being streamlined. The new rule is that
for Christmas, Birthdays and Mother’s Day,
11
if it can be wrapped I probably don’t want it.
Little inexpensive gifts are still ok but since
my diagnosis I have received the best gifts
ever. Usually dinner out or a show. Plus on
my fridge I have photos of a cow, a goat and
a pig. Mine, but they live with a World Vision
family somewhere. I’ll be very happy if my
menagerie increases.
Finally, I have the chance to get my life in
order. It started out in a rush, completing
photo albums and recording memorabilia for
my children. Now it is an enjoyable project
and I’m taking my time.
Cancer, friends and good luck Talismans
When I was first diagnosed I was sent and
given lots of little good luck items. I received a
plush teddy with angel wings, a gilt angel to sit
by my bed and watch over me in the night, a
wooden owl from a Japanese temple, a lucky
elephant called Magic (my son’s since he was
3 years old) and a miniature fully jointed bear
called Boo. Boo was hand sewn by a dear
friend Gemma and he came with a poem:
My name is Boo
With not much hair
I’ve come to live with you.
My heart is big
With love to give
Together we’ll get through.
Well Boo and Magic accompanied me to
every appointment, every treatment and
every test. They were with me at home and
in hospital and of course when we went
on our big family trip they came too. I put
a rubber band around them to keep them
together in my bag. As my treatment had
been successful, my good luck talismans
had assumed monumental importance in my
life. I think I actually believed they were partly
responsible for my good results.
On our very first night abroad Boo and Magic
were stolen from our hotel room. When
I discovered the loss the next day I was
devastated and felt extremely vulnerable. I
know it’s illogical but that’s how I felt. Two days
later while looking at jewellery at a roadside stall
a native American Indian came up beside me,
pointed to a necklace and said “That one will
keep you healthy”. It was a lifeline. I needed
that necklace for my mental well being at that
time. I wore it constantly. In retrospect she was
probably a savvy saleswoman who had spotted
my wig and said the words I needed to hear,
but I am forever grateful to her regardless.
Back in Australia two years have passed. We
have had deep downs and now with a first
grandchild on its way, life is looking brighter
again.
had assumed
My good luck talismans in my life.
e
anc
monumental import
they were
ed
iev
bel
ly
ual
act
I think I
od results.
go
my
partly responsible for
Recently I had a prolonged chest infection that
resisted treatment. Gemma decided to cheer
me up and made another tiny bear especially
for me. I could barely see him through my tears
and I will always treasure him. I do know better
now though. It is not the “good luck” gifts that
may have influenced my recovery and well
being, but the love, prayers and good wishes
that accompanied the gift, card, hug or letter.
The best thing is that all that love and hope is
safe, secure, and can never be taken away.
For a more detailed, filmed
interview with Coleen visit
www.kjlcn.org.au
12
Helen
6
n, NSW • Diagnosed in 200
Helen Cayas, 44 • Croydo
Here I am, three years since diagnosis of
Stage 4 non-small cell lung cancer, with
tumours in both lungs, which has now
metastasised to the brain. I was dealt
my news on my 41st birthday. At that
appointment, only chemo could be offered
and the prognosis was six months.
Well, all I can say is we are living in extremely
fortunate times when new treatments
and trials keep surfacing and even more
importantly, finding the right team of doctors
who are prepared to seek and find new
therapies, renewing hope for all involved.
living in
All I can say is that we are
when new
extremely fortunate times
p surfacing
treatments and trials kee
I am extremely grateful for this time to
accept, reflect and make adjustments to my
life and my family’s lives. It is a proud and
defining time to still be here, to see your
family coming to terms with something which
was so devastating to begin with. To have
open, exhausting discussions about life and
death - a subject that we were too scared
to even approach beforehand. The chance
to share your most intimate moments with
people you love. What a blessing!
The most rewarding of all experiences so far
has been sorting through my own personal
myriad of feelings and emotional states and
embracing my own spirituality. There is no
room for hysteria, denial, victimisation or
despair.
Hope. Joy. Gratitude.
Since then, I’ve attempted five different
chemotherapy treatments including a
targeted oral cancer therapy and undergone
radiotherapy twice, all with some success. I
have recently resumed the oral therapy, which
I successfully trialed initially but had to cease
when it stopped working after 12 months.
The drug is now accessible through a PBS
listing and there is some hope that it could
work again if the dosage is increased.
13
A family’s journey: Michael (patient), Irene (wife),
Amber (step-daughter) and Alec (step-son)
Michael
Michael, 49 • Hobart, TAS
I have had two lung cancers, one removed
in January 2007 and the other in June
2007. Both were small cell squamous
carcinomas, both primaries, and both in the
left lung. The first tumour was fairly small
but the second one was big and, because
of its location, the surgeons did not achieve
a clear margin when it was removed. The
cancer was classified as a stage 4 disease.
My first lung cancer was, in fact, my
second cancer overall. In 2005 I was
treated for oesophageal cancer. I did not
recover well and in late 2006 I became
increasingly unwell but we weren’t sure if
my discomfort was a continuation in my
decline or the development of another
disease.
they
I think I felt relieved when
cers.
can
g
lun
the
found the first of
I think I felt relieved when they found the
first of the lung cancers. When one knows
that another cancer is likely, and one
develops those tell-tale signs of insatiable
exhaustion and unexplained weight loss,
there is a sense of relief when they locate
the new tumour. My worst fear was that I
would develop a cancer that they couldn’t
find or can’t cure making my demise
appear imminent. Unbeknown to me that
situation was to present itself less than a
year later.
14
7
• Diagnosed in January 200
Surgery for lung cancer isn’t very nice, but
for my first lung cancer it was over and
done with fairly quickly. They removed the
top half of my lung and reported that the
tumour was gone. The circumstances
surrounding my second lung cancer were
very different. In March I presented to my
respiratory physician as my breathing had
become laboured. I had an x-ray taken
and it revealed an unusual mass in my left
lung. To investigate further I underwent
a bronchoscopy and had three biopsies
taken. Pathology from those biopsies was
undetermined so another bronchoscopy
was required and ten biopsies were taken.
Those latter biopsies were found to be
non-cancerous.
After my second bronchoscopy I began
to cough up blood. After a week or
two of doing so, and the blood volume
increasing, my doctor placed me in
hospital. I was deteriorating and he
wanted me in a safe environment. I spent
about a week in hospital during which he
arranged for laser surgery to reduce the
mass and then implant a stent to protect
the artery. I was rushed to Melbourne by
air ambulance and the next morning I
was prepared for surgery.
After being taken into the operating
theatre I was not conscious for the next
fortnight. When they opened me up
they found that a large blood clot had
formed in my left lung. The lung would
have to be removed and the laser surgery
and stent were no longer an option. I then
bled profusely so the surgeons stopped
the bleeding, intubated me, paralysed me,
and moved me to the intensive care unit
to be stabilised. By the time I was well
enough to have a chance of surviving the
operation it was Friday so the surgery was
scheduled for the next Monday. Following
Monday’s surgery, and before I regained
consciousness, I went code blue and had
to be resuscitated on two occasions. When
I came to there were machines all around
me monitoring the performance of my vital
organs. Irene saw as many as three intensive
care staff working full time monitoring and
adjusting machines that kept me alive.
Fortunately for me I was oblivious to all that.
Travel has always been important to us.
In 2005, soon after receiving treatment for
oesophageal cancer, Irene and I went to rural
Queensland. The dinosaur stampede near
Winton and Big Red, the biggest sand dune
in the Simpson Desert, are awe inspiring
places to visit. They marked the beginning
of my capacity for spiritual healing. Shortly
after my first lung operation (2007) we went
to the warmer regions of Australia again. It
is really awe-inspiring to take one’s first ever
parachute jump at the easternmost point of
Australia, Byron Bay.
From the time I woke up I slowly got better
and better. After about a week I moved
from intensive care to high dependency.
From there I went to the lung transplant
unit. About two weeks after my release from
intensive care I was ready to leave hospital.
Two weeks later I was cleared to fly and
could return home.
Another example of our re-organised
priorities was, after losing the rest of my
left lung, learning to fly. Many young boys
dream about flying a plane and I’d always
had it in the back of my mind. Due to my
poor physical condition I would never pass
the flying medical exam, but there is another
way to do it. All you need is a motor vehicle
driving licence to be able to fly an ultra-light
aircraft so I enrolled at a flying school to
learn to fly a plane, a very little one. When I
started flying I went to the aerodrome in a
wheelchair!
Before I became ill I was fit and strong.
On each occasion I began at a healthy
80+ kilograms and then lost more than 20
kilograms. Each time I ended up looking like
a skeleton with skin. I had difficulty breathing
before I had lung cancer and now, with only
one lung, I am usually short of breath. I have
very little stamina and am awake for only
twelve hours a day.
Those are the physical impacts of my cancer
experience. From a mental perspective my
world is a very different place. It seems to me
that before I was unwell I worried about things
that really don’t matter at all. The threat of
dying prematurely has made me value what I
have so much more.
ing of
Travel... marked the beginn
ling.
hea
my capacity for spiritual
My objective wasn’t to qualify for a licence.
I only wanted to know how to fly. After 21
hours in the air I gave it up. I didn’t meet
their standard of excellence but I certainly
reached mine. These days I spend endless
hours totally immersed in the cockpit of my
computerised flight simulator.
By this time my body had become more
used to its reduced capabilities and we felt
bold enough to resume travelling. We began
with baby steps, not wanting to venture
15
too far from a hospital and all the specialist
services. As my recovery continued we felt
more confident about travelling. We have
since travelled to Korea, Europe, Hawaii,
Malaysia and Brunei.
Travel insurance is extremely limited for
someone with my list of illnesses and we
were reluctant to risk very large hospital
bills in the event that I became ill suddenly.
Despite what Medicare told us, we found
that reciprocal countries do treat pre-existing
conditions. We have also discovered that
non-reciprocal countries can provide low cost
access to medicine. Malaysia and Brunei are
good examples of this.
erience
As sad as my cancer exp
it has
t
tha
e
has been, I believ
ously.
rm
eno
n
enriched my childre
If I was to list the three major contributors to
my survival they would be Irene, Irene, oh and
Irene. From the beginning of my disease my
wife took on an absolutely herculean task.
She has spent countless hours on the internet
researching each and every component that
may be useful to my survival. Whenever she
hears of a new treatment, a new therapy, or
a new drug she hunts it down and finds out
everything there is to know about it. There is
no stone left unturned by Irene in the quest to
discover something of value to my health.
And she has done all that in very difficult
circumstances too. When things were bad she
took total care of me, as well as looking after
the children and running the house. She did
everything, often without acknowledgement
or thanks. I know that it is common for cancer
patients to strike out at the one they love but
that doesn’t make me proud of doing so. From
16
today’s perspective I realise that she is the true
angel that she is. A lesser person would have
walked away.
With the benefit of hindsight I can recognise
an unanticipated consequence that came out
of my cancer experience. Our children have
observed, at a very intimate level, a deep
and harrowing personal journey. They have
witnessed a strong, fit and healthy person
transform rapidly into a very sick man on the
brink of death. They have seen the gripping
daily struggle that Irene and I fought for me to
stay alive. They have also seen me progress
to living the life of a physically disabled man.
I have good days and bad days, highs and
lows, happiness and sadness just like they do.
I believe that my most important responsibility
with regard to my children is to prepare them
for life. As sad as my cancer experience has
been I believe that it has enriched my children
enormously.
If I came in contact with a recently diagnosed
cancer patient there is only one piece of
advice that I would offer. Whatever you do,
don’t give up hope. I have had three cancers
(oesophagus, lung, and lung again) and a
melanoma that had just turned malignant.
The survival rate for a stage 4 lung cancer is
a bit grim, and oesophageal cancer has the
same survival rate. Only two treating doctors,
out of heaven knows how many, believed
that I could survive. I am cancer free today,
and nobody really knows why (except Irene
who firmly believes that all the paw-paw and
mango I’ve eaten have made the difference).
If it can happen to me, why can’t it happen
to you?
Whatever you do,
don’t give up hope.
Irene
Michael’s wife and carer
My name is Irene. I have been married to
Michael for over 11 years - and his carer
for over four years.
To ignore Michael’s first cancer
(oesophageal) would, I feel, not do
justice to this story. The impact from
the oesophageal cancer for us as a
family was very dramatic and so very
devastating. The impact from his first lung
cancer was not as severe whilst the impact
from his second lung cancer was very
severe but for different reasons.
Prior to Michael’s first cancer diagnosis
our life consisted of running a transport
business, ballroom dancing, bush walking
and travelling as often as we could. In early
2005 we decided to make a sea change.
We closed our business, secured jobs in
Harbin China, arranged correspondence
education for the children and bought all of
the necessary clothing we would need to
survive in minus 40° Celsius. Life however
had very different plans for us.
As we were preparing to leave for China,
Michael became increasingly tired. It
also became extremely difficult for him to
swallow food. However, due to a preexisting congenital disease, alarm bells
did not ring loudly enough. Unbeknown to
us at the time, his pre-existing condition
was masking the symptoms of cancer. As
Michael started to lose weight we delayed
our departure. It was only after several
months of increased tiredness, weight loss
and breathlessness that an endoscopy
and MRI scan were performed. We were
told that there was a 12cm tumour in his
oesophagus that was only a few millimetres
away from blocking it completely. An
appointment was then promptly made
for us with a radiology oncologist. During
the appointment the oncologist rang the
hospital and made arrangements for us
to be admitted an hour and a half later.
When you get such a diagnosis for your
partner your world comes crashing down.
You are lost. It is like you are being tossed
around in a huge wave and you cannot
figure out where the surface is. It is hard
to breathe and your mind is racing a
million miles an hour. You are heartbroken.
You would do anything to be given more
time with them. I remember thinking just
how grateful I would be to have another
two years together. Fortunately for us
Michael’s oncologist was very lenient with
the truth about survival rates. It was only
after I cornered him a week or so later
that he revealed if the treatment did not
work he would only have around three
weeks to live. It is only now with hindsight
and experience that I firmly believe that
ignorance is bliss and that you really don’t
need to know how grim a situation is.
nce I
With hindsight and experie
bliss
is
nce
firmly believe ignora
to
d
nee
lly
and you don’t rea
is.
n
atio
situ
a
know how grim
After being admitted to hospital Michael
was started on chemotherapy, radiation
and dexamethasone. After two weeks of
twenty two hours a day chemo and an
almost daily trip to another hospital for
radiation, Michael was sent home.
On returning from hospital my usually
kind, introverted and helpful husband
had become this horrid demanding
17
monster. He went on a spending spree. He
started screaming constantly with a level
of aggression I had not witnessed before.
Anything would set him off.
Looking back, I believe it was a combination
of the dexamethasone, and the stress from
the prospect of death that triggered his severe
manic episodes. Michael himself attributed his
anger to feeling smothered, not having enough
time to process what was going on, and losing
his role and identity.
Michael’s last radiology treatment finished
just before my 40th birthday party. As our
relationship was still not on track and there
was an enormous level of resentment on both
sides we decided to do what we do best,
travel. It worked. We went away to Mount Isa,
Birdsville, Winton, Charters Towers and the
Whitsundays without the kids. As we did not
know how much time Michael had left, all four
of us then went on a trip to parts of Europe,
Asia and Egypt. It was the right thing to
have done, because 13 months after his last
radiation treatment, a PET scan diagnosed a
small lung cancer.
Michael began having trouble breathing again.
He was put on prednisolone and the nasty
behaviour and mania started all over again.
It was more extreme this time. It was during
this time Michael started coughing up blood.
He was eventually taken by air ambulance
to hospital and I followed later that day on a
commercial flight.
It was good having someone else take over his
care. I needed a break from all the responsibility.
I was too exhausted from living from one cancer
screening to another. For the first time in years
I was able to just close my eyes and fall into a
deep, deep, sleep at night.
In intensive care Michael’s life really did
hang in the balance. His temperature was
at an extremely dangerous level and lots of
18
machines were performing the functions of
his organs. The staff turned the heart monitor
off because his heart was beating well over
130 beats a minute and the alarm was going
off constantly. His oxygen saturation was not
good. The surgeons were able to remove
his lung, his clot, but not all the cancerous
tumour. He died twice but was revived. The
second time he was deprived of oxygen for
over four minutes. With that episode I had to
wait in the waiting room for over three hours
while they fought to keep him alive.
nate
When someone is passio
rgy
ene
ch
mu
it is amazing how
ieve
bel
ly
firm
I
n...
they can summo
l.
hea
to
dy
bo
it helps the
After returning from Melbourne Mike spent
a lot of time sleeping. I could see lots of
people thinking he did not have long to live. I
had different plans. As a child I used to read
stories of people who beat amazing odds.
When someone is passionate it is amazing
how much energy they can summon for an
hour or so. I firmly believe that it helps the
body to heal. I encouraged him to fly. I also
got him to watch the Funniest Home Video
show. I remember reading about this kid who
healed himself by watching funny shows and
trying to laugh as much as possible. I nagged
him to read Harry Potter. Although reluctant
at first he ended up loving the series. I also
got a new lung specialist.
Mike was emaciated again so we had to
increase his weight. I think maintaining weight
with lung cancer is an enormous job. You
can’t do it with carrots, lettuce and turnip;
their calorie count is just too low. Mike ate
heaps of milk products such as sour cream,
cream, cheese, yoghurt, milk and chocolate.
Heaps of protein such as meat, fish, and
eggs. And lots of veggies, fruit and juices. I
don’t think we could have done it, however,
without the hospital supplements. And
yes he drinks lots of coffee and tea.
Mike wanted to fulfil one of my dreams.
He wanted to take me to Christmas
Island to see the crab life-cycle. We
rented a house for close to two months
on the Island. I slept in a different room
because his wheezing was so bad.
As the Island had lots of wild paw paw
we started eating heaps of it. We also
ate lots of frozen blueberries. We used to
go everyday and soak in one of the small
beaches with easy access. The water
was just so warm that Michael did not
have to worry about getting cold. After
about four weeks his health dramatically
improved. I just have this gut feeling that
the paw paws and mango juice had
something to do with it. It was the only
thing that we were doing differently. When
I tell any medical person they just roll their
eyes and think I’m really stupid.
Twenty one months on there is no tumour
and our new lung specialist, with a tear in
his eye I’m sure, told us that he thought
Mike’s immune system has dealt with the
cancer. He then told us that Mike was the
first patient he has had whose immune
system had conquered remnant lung
cancer cells. Previously he had only read
about such cases.
If you are a newly diagnosed cancer
patient with a terminal illness I would say
get your superannuation out and enjoy
your life or pay some debts off. Do all
the things you have always wanted to.
Secondly don’t be an ass to your carer or
your family. They didn’t ask to be put in
this situation. The responsibility of caring
for you is overwhelming. They cannot relax
because they are so concerned about
your well being. They’re tortured about
the prospect of losing you. If you have a
family the carer has to be responsible for
everyone else’s well-being. They probably
can’t sleep and experience bouts of
anxiety. Thirdly, there is always hope.
cancer
If you are a newly diagnosed
gs you
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d
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be an ass to your carer or
e.
hop
ays
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re
Thirdly, the
I miss my ballroom dancing so much. I hate
the responsibility of having to be a carer.
I comfort eat. I can’t sleep. There have
been times where I just can’t get off the
couch from mental exhaustion. Sometimes
I remember the horrid things Mike said to
me when he was sick. However I want him
to be alive more than anything. His cancer
has made me not be afraid of loneliness or
taking care of myself. It has made me much
stronger. It has given my daughter amazing
opportunities with CanTeen. It has taught
the children great home care skills. It has
allowed me to be home when they come
home from school. It has given us, as a
family, time to have wonderful conversations
because we are usually at home. It has
given us the opportunity to see the most
amazing things.
My motto has always been ‘do things
sooner rather than later’. And I always
found Matt Pusey from Lungevity to be
an inspiration.
19
Amber
Michael’s step-daughter
My name is Amber and I am the stepdaughter of Michael. I am currently 20,
soon to be 21, and in my final year of
uni studying Fine Arts and loving it!
Dealing with cancer directly or indirectly is
most certainly a life changing experience.
Despite the three separate bouts of
cancer my stepfather Mike has fought
and survived since 2005, the toughest
thing I have ever had to deal with has
also been one of the greatest. Seeing a
loved one’s slow but sure deterioration
is tougher than I ever imagined. A few
months before Mike was diagnosed I
recall thinking about how much easier it
would be having time to say goodbye to
someone rather than it happen suddenly
without warning. It’s not.
In some ways it’s harder, seeing someone
who has had such an impact on your
life slipping through your fingers like the
sands of time. On the other hand there’s
also that time to really appreciate life for
what it is and to think about what you
make of it while you can. The things in life
that make it what it is shouldn’t be taken
for granted. Life is so precious and since
cancer has been introduced into my life
I realise this in a much broader sense. I
try to live every day knowing that it could
be my last and believe it is so important
to let the ones close to you know how
important they are to you. I also believe it
is important to try to replace your dreams
20
with reality. After all, the worst that can
happen is you fail and you can learn from
your mistakes and just keep trying and
trying. It’s amazing what passion and
persistence can do.
Although I know the stresses of cancer
can tear a family apart, Mike’s cancer
brought our family closer together. I
started to spend less time doing things
that didn’t really matter and began to
focus more on the things that did, at
the time being my family. Since this
rollercoaster, whirlwind of a journey I
am a changed person and now see the
world through different eyes.
sses
Although I know the stre
ily
fam
of cancer can tear a
t
ugh
bro
apart, Mike’s cancer
er.
eth
our family closer tog
Life is life – not just living, and the
prospect of death is real not just
something seen on the news headlines
or in a movie. In some ways it might be
harder seeing things this way, but I also
think it’s a whole lot more beautiful and
more real. I don’t think things shock
me as much anymore. I’m not sure
whether that’s a good thing or not
but it’s just the way it is. Before Mike
got sick the word ‘cancer’ seemed
like the forbidden fruit of vocabulary,
but now it all seems very normal. I think it just
scares people because they think it means
death is lurking in the shadows. In general
conversation people tend to avoid this
taboo topic, or if they hear that such and such
has cancer they simply say how sorry they
are instead of wanting to know how they
might be able to help. I know there were a
lot of friends and family of Mike’s who only
bothered giving him the time of day when
they thought he was lying on his death bed.
It’s just a guilt act, like those people who turn
up to a funeral after ten years of no contact
with the deceased. This really made me think
about who was important to me and why.
Second to my changed outlook on life,
the next greatest thing that Mike’s cancer
brought to my life is CanTeen. CanTeen
has been a whole new chapter in my life.
Before my first camp I thought this charity
organisation was just a bunch of lame feel
good camps with a heap of little annoying
kids running around. I was 16 at the time
and really didn’t feel the need or want to go,
but my mum convinced me otherwise.
I clearly remember my first camp in late 2005,
shortly after Mike was diagnosed. I was flying
interstate to spend about a week with a heap
of people I didn’t know. When I arrived at the
office I discovered there wasn’t just a bunch
of young kids to pull on my hair. In fact, it
was quite the opposite and there were other
members my age and older. There was a
warm, friendly atmosphere and the staff made
every effort to make sure everyone was feeling
included. I was feeling slightly nervous for the
out
It was refreshing hanging
ple
peo
er
with and talking to oth
of
t
sor
who understood the
h.
things I was going throug
first part and I lingered in the background while
observing everyone else hugging and laughing
within their friendship groups. It wasn’t long
until we were on the bus and a boy one year
older came and sat next to me and we started
talking. After that moment I felt like I was ‘one
of them’ and came out of the camp feeling
much better. It was refreshing hanging out with
and talking to other people who understood
the sort of things I was going through. It was
also nice to hear the points of views from kids
who had cancer or were in remission, other
members who had parents and or siblings
who had cancer or were in remission or that
had passed away. The camp not only let me
put other aspects in perspective but also
enabled me to let my hair down and to come
out of the camp with a few more friends.
As time went by I became more involved
with CanTeen and went on more camps and
recreation days. I also become a role model
for younger members and in 2007 joined my
state committee board where the members
held the power to decide what was most
beneficial for the broader membership. I
enjoyed this so much that I ran for and was
elected as the 2008 state president. It was
a really empowering experience and it felt
so fulfilling to give something back to the
organisation that had given me so much. It
was also a good confidence booster and
gave me an understanding of some sort
of professional practice. Currently, I’m not
so involved with CanTeen due to my study
commitments but it has all been an amazing
experience. CanTeen has for a large part
been like another family to me. There is a
great support network across Australia and
I have made a bunch of friends locally and
interstate that I know will be an important
part of my life for years to come.
21
Alec
Michael’s step-son
My name is Alec, I am seventeen years old, I
am currently in year 12, and this is my story.
My step-dad, Mike, had reported feeling ill
in early January 2005, and though it seemed
inconsequential at the time, it grew gradually
worse over the course of the year. It was
September 2005 when I first visited the
hospital. My step-dad had been there for
several days before I was called in by my
mother. She told me the bad news, that Mike
had developed oesophageal cancer. The
chance of survival in Australia was roughly
4%. I was thirteen at the time.
At the time of the diagnosis I was living at my
father’s house, as I constantly changed from
household to household. The next two weeks
consisted of anxiety, distress and sleepless
nights, as well as the occasional visit to the
hospital. For the first time in my life I was
confronted by the reality and possibility of
losing someone particularly close to me.
It was pretty obvious, and for obvious
reasons, my sister, mother, and step-dad
were as devastated by the news as me. I
didn’t discuss the impact of the cancer with
my social network, with the exception of
one or two friends. The only people my
age who knew, knew from their parents.
I think I preferred it that way.
During this time I came into contact with
CanTeen. It was the only place where I could
relate to kids my age about cancer. CanTeen
camps provided a welcoming way to come to
terms with cancer. Its members consisted of
people who were not just going through what I
was experiencing but also teenagers who had
experienced and recovered from the impact
of cancer. This provided me with comfort and
reassurance. I discovered that many kids my
age who have or had close ones affected by
cancer separate their experience with cancer
22
from their social network. Although reluctant to
join CanTeen at first it has become increasingly
clear to me that CanTeen was the biggest
source of support and guidance outside my
parents.
a welcoming
CanTeen camps provided
h cancer.
wit
way to come to terms
Due to the dire circumstances of Mike’s
cancer we took a number of holidays. Though
the holidays coincided with the experience
of cancer they are easily some of my most
memorable and happy experiences. The
potentially reduced quantity of time seemed
to make the quality of the holidays far greater.
They allowed us to escape the stress of living
with cancer at home, and enjoy what could
be numbered days together.
As time progressed Michael’s condition
became progressively better. By early 2006
the oesophageal cancer had disappeared.
Chances of the cancer reappearing were
relatively high. A number of weeks later my
sister, mother, step-dad, and I travelled across
Europe for roughly three months. Because
of the cancer and the treatment Michael was
unable to walk for extended periods of time,
so for the first week of the holiday he was in a
wheelchair. For the remainder of the holiday he
was unable to carry any weight. I don’t think
any of us minded physically supporting him
during the holiday and beyond, but it was very
tiring sometimes. It also meant that when we
got back I was suddenly experiencing a vast
increase in housework. Not that I really minded
that much in the grand scheme of things.
In late 2006 Mike was diagnosed with lung
cancer. Shortly thereafter the cancer and his
left lobe were removed. I was living at my
father’s house during this time. The prognosis
for this lung cancer was much more
promising than the first one. There was
barely any time between the diagnosis
and operation. As a result I was affected
minimally by the second one.
After the operation Mother and Mike
went on holidays to New South Wales.
My sister and I stayed at our father’s
house. Mike began to feel ill again while
visiting my grandparents. Consequently
an x-ray was taken, which showed a
growth. Three samples of the growth
were cut off and tested, all came back
inconclusive. Later ten more samples
were taken. Seven were inconclusive,
the other three negative. Then he
went to Melbourne for surgery. There
they discovered the mass was in fact
cancerous. This was in mid 2007.
The left lung was completely removed
although a section of the cancer still
remained. Hence the chance of it
growing again was almost certain. After
Mike had recovered to some degree they
travelled back to Hobart, where Michael
rested at the hospital.
As if reliving a nightmare from the past I
was called into the hospital. My mother’s
voice had been alarming on the telephone.
My fears were confirmed when I walked
into the hospital room, tears ran down
my mother and Mike’s face. I can clearly
recall the words as she looked up to me,
“It’s terminal”. In many ways the third
cancer wasn’t as shocking. I had already
experienced the shock of the first two. I
was used to my reaction, as well as the
reaction of people around me. I was also
more mentally ‘tougher’, though it still had
(obviously) a devastating impact. Changes
in my life were also not as drastic, for
example I was already used to many of
the alterations in my life, such as hospital
trips, household arrangements and the
emotional impact.
On the other hand it seemed almost
cruel that to miraculously survive the first
cancer Michael was suddenly affected
by a life threatening cancer for the third
time. It felt as if you had just reached
a summit, only to be confronted by a
vertical cliff. At the time there had been
no doubt in my mind that the cancer
would eventually kill Mike. Every three
months or so Michael would go into the
hospital where they would check for the
appearance of a tumour. Four years have
passed since Mike was first diagnosed
with cancer. Two years since the terminal
lung cancer. This year Michael was finally
declared cancer free.
Words would not adequately describe
the relief that we all shared once the
ordeal was over. Michael has a weakened
body as a result of the treatment and
the removal of one lung. He also has a
weakened immune system and is prone
to catching diseases. On the other
hand he’s alive and surprisingly well.
I believe that there would not have been
such a strong family bonding over the
years had it not been for the cancer. As
a result I think I have a better relationship
with my mother and step-dad then I
would have otherwise.
activity
Involving oneself with an
y
is a healthy way to not onl
r
you
ar
enjoy yourself but also cle
ts.
ugh
mind of unwanted tho
Involving oneself with an activity is a
healthy way to not only enjoy yourself
but also clear your mind of unwanted
thoughts. I’ve noticed many people with
different outlets; some might choose
to involve themselves in some form of
physical activity. Others may take a more
mentally involving activity. In the case of
my step-dad I think learning how to fly
was one of his ‘distractions’. I personally
did not take full advantage of this, though
I would suggest it to anyone dealing with
a similar experience to mine.
23
Gay
I had experienced a peculiar, dry, unresolving
cough for around six weeks. The GP on
repeated visits reassured me that this was
viral. A matter of fact comment at a friend’s
60th birthday party by a complete stranger
“that is a nasty cough,” was unsettling.
This was followed by a sleepless night due to
even worse coughing episodes, which was
the turning point. The next morning I went
back to the GP and insisted on an immediate
chest x-ray. An hour later I received a call on
my mobile telling me I should return to the
GP. The x-ray showed two tumours in my left
lung, one against the bronchus and one in
the site of an old scar in the left lung.
My response was shock and disbelief as I
have never smoked and have been in good
health for the last twenty years (in complete
remission from breast cancer diagnosed
20 years ago). My GP and I set in motion
several referrals and further tests. I was not
impressed but set about finding out sufficient
information before collapsing in a heap.
I did immediately tell family and close friends.
I have supportive close friends and that
was very therapeutic for me. That evening
a dear girlfriend peeled the spuds for my
family’s evening meal whilst we cried onto
the peelings. As I believe in transparency, I
told my family, friends, and colleagues either
personally or by email so that they would
understand I would be out of action in the
near future. Also I did not want everyone to
unintentionally make the story too grim (at this
stage) as I was not about to drop my bundle.
People’s reactions were interesting. Some
immediately told me depressing stories about
people whom they had known who had died
of lung cancer, but most were interested to
24
5
W • Diagnosed July 200
Gay, 61 • Cheltenham, NS
hear the story and understand as we went
along the decision-making path.
Some friends were really devastated and
I spent a lot of emotional energy (in short
supply) reassuring them. Some were so
terribly eager to assist and although their
hearts were in the right place, I had to say
“back off, please”. I seldom say “no” so
that was a learning experience for me. My
husband and sons were wonderfully loving
and supportive. Their usual black humour
was actually reassuring.
I knew no other people with lung cancer
personally, but I had plenty of friends/
acquaintances with breast cancer whom
I had been delighted to help in the past.
When I was 37 I had been diagnosed with
left breast cancer; had a mastectomy,
chemotherapy and radiotherapy and was in
remission. I still am. The scarring of my left
lung is a late effect of the 1985 radiotherapy
to the left chest wall. In 2005 one of the lung
tumours was in that exact position of the
scarring! Fortunately radiation oncologists tell
us today’s radiotherapy is more refined and
better targeted.
One small mercy was that the cancer
was identified as non-small cell type. This
is considered to be more amenable to
treatment. Off-setting this was the finding
that a mediastinal lymph node was impinging
on my right lung. Surgery was generally
considered as having the best prospects of
successful treatment but I was considered
inoperable unless this node could be drawn
away from the right lung using chemotherapy.
So I had chemotherapy for three months
which involved having an infusion of drugs
every three weeks. I was nauseated and
tired for approximately four days after each
treatment but recovered to feel well enough
just before the next treatment was due! It
felt like diving into a wave, getting your head
above the water, a gulp of air, and another
wave hits. My hair disappeared and I wore
a wig and the local wits told me I looked
like one particularly attractive ABC female
news reader. That made me feel better!
Incidentally the hair grew back well and
robust. My veins were already compromised
by the chemotherapy twenty years earlier
so I was most grateful to the skilled and
compassionate nurses who set up the drip
into reluctant veins - unsung heroes.
these
Drugs are so much better
side
days and management of
developed
effects is so much more
and staff are well trained.
Usually on Monday I would have the
chemotherapy and initially I stayed overnight
for observation. For subsequent treatments
I came to the ward as an outpatient.
Sometimes a friend would come with me to
distract me, depending on my mood/needs;
occasionally I really wanted no one with me,
preferring to be introspective. The next few
days were a bit of a blur and then I would
recover my appetite and the metallic taste in
my mouth would dissipate. However, it did
put me off wine for a few months. I would
strike each chemotherapy treatment off the
calendar and felt pleased when I achieved the
half way mark. The availability of the nursing
staff meant that at any time I could ring if I
had a query. Drugs are so much better these
days, the management of side effects so
much more developed and staff well trained;
the side effects were not as devastating as my
previous chemotherapy twenty years earlier.
Feline effect - at home I had a very stand
offish cat who usually ignored humans,
treating them disdainfully but he sat on top
of me whenever I was recovering in bed from
chemo purring incessantly and loudly.
After completing the chemotherapy, the pesky
tumour against the bronchus had shrunk but
the lung surgeon was once again pretty up
front. He said that I should now have a full
body scan including brain and if there was
any brain tumour there would be no point in
removing my left lung. The brain was all clear
so fortunately I was a candidate for a left lung
pneumonectomy. I recovered quickly and with
minimal pain due to a terrific surgeon, a skilled
anaesthetist and compassionate nursing
staff. I have a scar down my left back which
occasionally aches depending on the weather.
After a break I had radiotherapy to the chest
area, going into the radiotherapy department
as an outpatient each day for five weeks. I was
not expecting to feel so tired. I just crawled
into bed after each treatment and tried to beat
the cat in. I noticed only that when we were
clambering up hills on archeological sites in
Sicily, I could not talk and climb at the same
time. My body said “just one at a time”. That is
a hard one.
I had three monthly scans and blood tests and
was well for approximately three years. Then I
noticed that I had a lump behind my left clavicle
and was experiencing tingling sensations down
my left arm. Various tests showed that it was a
single lymph node spread from the lung. I was
naturally disappointed but felt that I had already
managed the hurdles presented to me to date
and besides my oncologist had a cunning plan!
So I then had another six months of a different
chemotherapy. My hair thinned but did not fall
out. It was so thin however that I decided to
have a # 1 hair cut much to my hairdresser’s
dismay. I had similar side effects to the
chemotherapy three years previously. Once
again family and friends rallied round. I worried
that they were already burnt out but they do
seem to be most resilient. I think they took their
cues from me. That is hard if the patient is not
given hope.
My oncologist tells it like it is. He gave me
a copy of a paper he had presented with a
couple of ghastly realistic photographs about
an oral cancer therapy and told me about
25
acne, diarrhoea etc and I was frankly not
overwhelmed to start on it, imagining myself
back with teenage skin issues and always
having spare knickers in the handbag. But we
discussed the outcome statistics to date and
I was pleased to have an option. I have now
been taking this oral therapy for 10 months.
Initially my face developed an acne-like
rash including my eyelids which was most
painful. I did not take the medication for a
week with my oncologist’s approval. But
I received excellent support from a team
conducting a treatment side effect trial at
the Skin and Cancer Foundation, suggesting
various skin creams, which I use religiously.
I also experience some toe and finger nail
infections (paronychia), which are treatable
early for best effect. Wearing thongs in winter
is not the end of the world – just cold. The
treatment (sliver nitrate cream) colours the
nail black, which may clash with the preferred
nail polish.
The anti-diarrhoea medication works well
and I now recognise the pattern of certain
rich foods. My eye lashes have grown curly,
which is incidental. My three monthly scans
since have been clear so I am pleased with
the outcome so far but I never take it for
granted. I do have an occasional slight cough
which is not sinister, just a nuisance. I think
the bronchus is easily irritated. My oncologist
is also so helpful; listening and devising
strategies for dealing with side effects.
These days I do not get fussed about small
issues or peeves. There are some people
whose company I do not enjoy so I don’t
fuss about them. In the past I would have
over analysed the situation and tried to reach
a compromise. I was very pleased to have
shared both the bad and good news with
my immediate family and friends and I think
our relationship is stronger because of that.
I don’t want them to become morbid but I
think we all need to get on with our lives and
enjoy each day.
26
Now to my soap box - It saddens me when
I hear people preaching that if you have a
positive attitude you will survive cancer. I
have plenty of friends who really wanted to
live and had many and real reasons to be
positive, however, they died nevertheless.
Some of them died feeling they had let their
family down by not wanting enough, to
live. I believe that having a positive attitude
improves whatever time you have left. Let
the clichés go.
My work colleagues were also supportive
and seemed genuinely interested to learn
about lung cancer, especially seeing I had not
smoked or worked in a vulnerable situation.
I think my family and friends have also learnt
from me that you need to persevere if you feel
you have a problem – don’t be intimidated.
Sometimes at social events I surprise myself
by becoming tired so I simply say “I am going
to bed,” even if we are having a dinner party!
I also say “no” when people ask me to assist
them, when in the past I would have thought
it was my role/duty.
To others diagnosed with lung cancer I would
just say after you have got over the initial
disbelief seek out professionals who give
you hope. I don’t mean a positive prognosis
necessarily; I mean the hope to manage the
situation with compassion and honesty. If
you have family/friends that cannot support
you, suggest they obtain help for themselves
and don’t try to be everything to everyone.
Tell people how they can help you; they
cannot second guess. Maybe say “I need no
help at the moment but I will tell you when I
do and how you can assist me”. It is scary
stuff for the friends as well. They are pleased
it is not them but terrified of not being able to
help you or not appearing to be helping you.
Some GPs may need targeted education and
support. Lung cancer is not a “sexy” cancer
like breast cancer. I believe that publicity and
sensible advice is the best way to educate
the public and telling a few stories, warts and
all may assist.
Felicia
D • Diagnosed in 2007
Felicia, 56 • Brisbane, QL
My name is Felicia and I am 56 years old. I
share my time between Brisbane and Hong
Kong, where my husband John, has business
interests.
We were travelling through Europe, Africa and
Asia in 2007 when I found myself becoming
very tired and losing a little weight. At first, I
didn’t give it much thought - after all we had
been travelling for some two months, walking
extensively and had crossed various time
zones. It wasn’t until we got to India – last
stop before returning home to Brisbane – that
I developed a rather nasty dry cough that
concerned my husband more than it did me
at the time.
This stubborn cough remained with me for
the duration of our stay in India, right up
until we returned home. When I coughed
up blood, it confirmed my husband’s initial
feeling that something was not quite right.
We immediately went to see my doctor – I
wanted an x-ray to ensure I had not caught
TB while travelling. Lung cancer did not even
cross my mind at this point - why would it?
A biopsy and CT scan confirmed that I had
cancer, which had spread to both lungs. I
could not believe it! I was absolutely shocked
to the core, as was my husband. ‘How could
this be?’ I asked. ‘Surely it’s a mistake...
I’ve never smoked!’ How little did I know at
the time that it is a disease that does not
discriminate!
I remember asking my oncologist how long I
would survive and feeling totally floored when
I was told that the cancer was inoperable and
it could be a few months, maybe two years
at the most. Here I was feeling healthy, having
just returned from a wonderful holiday and my
life was given an expiry date. I tried to keep
strong and calm but deep down I was already
preparing for the worst and worried how this
news would take its toll on my husband and
immediate family.
After the initial shock subsided, I accepted
the diagnosis. This is life - I could not change
it. However, I was determined that I would
not give up and immediately wanted to start
treatment.
nge it.
This is life - I could not cha
uld
wo
I
t
I was determined tha
ly
ate
edi
not give up and imm
.
ent
atm
wanted to start tre
My initial treatment began with chemotherapy.
I remember being so surprised to see so
many cancer sufferers in the chemo ward.
As heartbroken as I was to see so many
other cancer patients, at the same time I felt
reassured and comforted as I no longer felt
27
alone. I was not the only soldier in this war. The
nurses and the friendship formed with the other
patients helped keep me positive and eased my
nerves during this time. Despite the anxiety – I
still had hope and this is what got me through.
ship
The nurses and the friend
ts
ien
formed with the other pat
ed
eas
and
helped keep me positive
e.
tim
my nerves during this
I underwent two types of chemotherapy,
however neither helped in controlling the
cancer – it had spread to my bones and liver.
It was at this time, as my hope started to
slowly disappear, that my brother who lives in
the United States told me about a medication
he had read about on the internet. Like many
family members of people first diagnosed with
cancer, my brother spent countless hours
researching the internet. He had learnt about
an oral cancer therapy and encouraged me to
ask my doctor about it.
At my next appointment with my oncologist,
one of her peers was also there. I asked them
about the oral therapy and it so happened that
I was good candidate for this new treatment.
I was so pleased – my hope was renewed. I
started it immediately and have been on it now
for the last 18 months.
am now
The oral cancer therapy I
nce.
on has made a big differe
well
as
I’m living my life almost
sis.
as I was before my diagno
The oral cancer therapy I am now on has
made a big difference. I no longer feel like a
cancer patient, as I did when I was undergoing
chemotherapy. I’m living my life almost as well
as I was before my diagnosis.
28
Although my treatment is working well, I also
do my best to help ease the burden. I practice
tai chi every day. This has not only been a great
form of relaxation and exercise for me but has
helped immensely in controlling my breathing,
which is so very important when you have lung
cancer. I ensure my diet is also rich in fresh fruit
and vegetables.
My husband John has been extremely
supportive during my journey, even though
at times he has felt completely helpless. This
journey has brought us so much closer. Sadly
before my diagnosis, life was just one big
rush - we never made enough time for each
other. Now though, we treat every day as a
blessing, we make the time for one another
and have learnt to treasure every moment we
continue to be blessed with. It’s as though
we’ve fallen in love all over again and are
just beginning to date. It’s been wonderful to
experience this renewal in our relationship.
s just one
Before my diagnosis, life wa
I never
and
d
big rush - my husban
other.
h
eac
made enough time for
as
day
ry
eve
Now though, we treat
’ve
we
ugh
a blessing. It’s as tho
fallen in love all over again.
My message of hope to others living with
lung cancer is simply, don’t give up. The
medical world continues to improve in leaps
and bounds, and we don’t know what lies
ahead. Continue to ask questions of your
doctors – don’t be afraid. I used to think a
cancer diagnosis meant an immediate death
penalty – but I’ve been proven wrong.
Make the most of every day. As soon as
you give up hope, you give up life!
Jamie
Jamie, 34 • Sydney, NSW
I have a de facto spouse, Jenny, of 11 years.
We have two children, a daughter Wonita (10)
and a son Riven (6). My father, Tony, is 59
years old. I have a younger brother, Beau.
My Mum, Joanne, was diagnosed in November
2008. She had just turned 55 in September
and both her and my father had recently retired
from work. They planned to move out of
Sydney and in October had just settled to buy
a place in Lake Macquarie. With all the moving
plans underway, Mum started to feel lethargic in
late October. She put it down originally to trying
to give up coffee. When she coughed up some
blood in the first week of November she saw
her GP who organised for a CT scan the next
day. The report on November 4th indicated a
likely diagnosis of stage 4 lung cancer, with
significant spreading to her pancreas, adrenals
and lymph nodes.
everyone
I always knew that one day
nature
is bound to get news of this
regarding a loved one.
I always knew that one day everyone is bound
to get news of this nature regarding a loved
one. I have had some shocks in the past and
I was determined never to feel that way once
more. I had often prepared myself for hearing
such news again, and although my initial
reaction was quite measured and accepting,
in hindsight I had never really thought past
that initial point of receiving the news. It was
just the very beginning of the process and the
journey with Mum over the next few months
was something very new to me, something I
hadn’t faced before and something I was naive
to think I could prepare for.
nne
• Son of, and carer for, Joa
Following Mum’s diagnosis we had support
from extended family and friends, many of
whom were positive and encouraging. However
both Mum and I had a prior understanding of
the disease. We didn’t need to be told by an
oncologist how grim the prognosis was. We
appreciated the efforts of everyone around us
but we understood what she was facing. I’m
not sure if others had the same understanding
or not. Mum was always a private person and
was prepared to face it in her way.
Surgery was never an option and Mum
was wary of commencing chemotherapy.
Throughout November she deteriorated
quickly and with delays in getting a confirmed
diagnosis we lost our window to commence
chemo. On the day she was due to begin she
had absolutely no energy left and we moved
her into a palliative care hospital. She spent
two weeks there fine-tuning her treatment
regime, her morphine doses, and fortunately
she gained a lot of strength and was able to
return home. She spent three weeks at home
in December with daily visits from nurses.
She was also on hand to celebrate Christmas
with her grandkids, which was very important
to her. It was noticeable that with each day
she had a little less energy than the previous.
On New Year’s Day she asked if she could be
moved back into hospital. We saw a gradual
decline in her energy and alertness over
the next few weeks and she passed away
peacefully on 19th January 2009.
Mum didn’t suffer some of the typical
symptoms that other lung cancer sufferers
have. She had no respiratory issues. It was
all about her energy levels and managing her
abdominal pain. Her journey simply saw her
29
body slowly shutdown. She had immediate
family on hand to see her care matched
her wishes and that she had the mental
resources to cope.
She had immediate family
matched
on hand to see her care
had
she
t
tha
her wishes and
e.
cop
to
ces
the mental resour
The impact on life goes barely unnoticed
when you’re in the middle of it. Looking
back now, a lot of things happened fast. I
was living in New Zealand when Mum was
diagnosed. I briefly travelled back to Australia
by myself in early November then went back
to New Zealand to coordinate the logistics
of re-locating Jenny and the kids. We had
completely moved our lives back by the end
of the month. Fortunately my brother was
able to help my father with the move up to
Lake Macquarie. Despite the diagnosis, my
parents had already signed the papers and
still had to go through with the move.
From the time of Mum’s diagnosis, I found
myself in a position where I was coordinating
Mum’s care. Dealing with hospitals, oncologists,
nurses, appointments, administering
breakthroughs… everything. Although, I’m sure
any one of the immediate family would have
gladly taken on the role if needed, I found myself
doing it spontaneously.
The public hospital system experience was
disappointing. You really need someone’s
energy to drive the process through. I feel for
people who don’t have that support available
- an advocate to make sure they get the best
out of the system.
I was always very close to my Mum and I’m
thankful that I was in a position where I could
become a carer for her. The flexibility of my
family, my work, all enabled me to take it on.
Sometimes life moves fast and you don’t pause
to take in the significance of your relationship
with loved ones. Despite the terrible disease,
30
it did provide the whole family time to come
together and be with Mum.
Typically, the disease is detected late and
if you’re involved in one of those cases
it’s important to come to terms with the
prognosis, and quickly. I know some people
might not agree with this but I believe there
are worse things that can happen than dying
to this disease. As a carer, it’s important
that any suffering and loss of dignity to your
loved one are minimised or even avoided.
It’s important to get the most out of the time
left whilst remaining respectful of the needs.
You and your extended family and friends will
have needs too, but don’t over-burden your
loved one. Get the balance right.
I can appreciate that our story is just one of
so many, both with common elements and
yet unique. Mum was very accepting of her
situation and didn’t aggressively look to be
cured. Her focus was quality of life, minimal
suffering. I sometimes wonder if we had
adopted a different approach what difference
in the outcome we would have seen. Maybe
we could have prolonged her life, maybe
she would still be with us now. Despite the
possibilities, it was a chance Mum chose not
to take. She wasn’t prepared to pay the cost
for the struggle. I know others would have.
At the end of the day, I don’t question whether
or not we did the right thing. I know we did
the right thing. It was right for Mum. Each
sufferer of the disease has to face it in their
own way.
Kathleen
ba, QLD • Diagnosed in
Kathleen, 69 • Toowoom
2006
As told to The Australian Lung Foundation
Kathleen is no stranger to lung cancer – she
has lost two brothers (one a never smoker
and the other a heavy smoker) to lung cancer.
In 2006, Kathleen had retired to Tweed
Heads in NSW and was actively involved
in volunteer work as a Point Ranger, which
included logging in boating activity and
responding to mayday calls.
However, she started to notice that her walks
up the hill to Point Danger were leaving her
breathless. Initially, she put it down to a
bad flu but she then started to experience
palpitations.
Kathleen found herself being taken to hospital
by ambulance. In hospital, she had a chest
x-ray, which she was told revealed “a mass
of pneumonia” in her right lung. She was
prescribed antibiotics and sent home.
“The expression “mass of pneumonia” played
on my mind – I’m a trained nurse and I couldn’t
recall pneumonia ever being referred to as a
mass,” Kathleen said.
Kathleen decided to go back to her local GP for
a follow up visit. Once again, the GP wanted to
prescribe her more antibiotics.
“I just sat there in his surgery and said I want
another chest x-ray and a second opinion on
it and I’m not leaving your surgery without a
referral,” she said.
x-ray and
I said I want another chest I’m not
and
it
on
n
inio
op
ond
a sec
t a referral.
leaving your surgery withou
Securing the x-ray referral, Kathleen went
directly to the radiology clinic and waited
for the images. That same day, Kathleen
took the x-ray back to her GP for a second
opinion.
“He took one look at the image on his screen
and said ‘you need a CT scan’,” Kathleen said.
“I had a golf ball sized mass in my right lung!”
The GP referred Kathleen to a thoracic
physician on the Gold Coast but she was
told she would have to wait five to six weeks
for an appointment.
“I had to be assertive and say to the
receptionist – I have a golf ball on my right
lung and I need an appointment now!”
Kathleen said. Three days later, Kathleen
saw the specialist who confirmed she had
non-small cell lung cancer.
say I
I had to be assertive and
t lung
righ
my
on
l
have a golf bal
now!
ent
tm
oin
app
an
d
nee
I
and
Kathleen then had a biopsy and an endoscopy
and was booked in for lung surgery in Tweed
Heads.
31
However, Kathleen’s daughter intervened with
the treatment plan and persuaded her to move
to Brisbane for treatment so that she could be
near extended family.
Kathleen moved up to Brisbane and proceeded
with her lung surgery, which involved surgery to
remove the lower right lobe, half the diaphragm
and lymph nodes.
“After my operation, the doctor told me I was
cancer-free,” Kathleen said.
Within three months, she started back on her
10km walks with her walking group and lawn
bowls.
Then in January 2008, Kathleen went for a
check up and was shocked to discover her
lung cancer had returned.
“It was like having the rug pulled out from
underneath me,” she said. “I was angry and
shocked and just sat there staring daggers
at my doctor.”
ek from my
I found myself taking che
defeated y
ver
ling
fee
and
n
childre
one day
up
ke
wo
and then I just
doing I
am
at
‘wh
t
ugh
tho
and
self!
my
for
up
I have to stand
Kathleen then had chemotherapy and
radiotherapy and found herself very
exhausted from the treatments.
“I started to prepare for death – I starting
giving things away to my family, sorting out
photos – I lost a lot of confidence in myself,”
she said.
32
“I found myself taking cheek from my children
and feeling very defeated – and then I just
woke up one day and thought ‘what am I
doing – I have to stand up for myself’,” she
said.
But when Kathleen’s doctor told her once
again there was no sign of cancer following her
treatment, her reaction was one of disbelief.
told her
When Kathleen’s doctor
cer,
can
of
n
sig
no
s
there wa
belief.
dis
of
one
s
wa
n
ctio
rea
her
“I actually felt very depressed – I had been
preparing to die!” she said. Kathleen was able
to access counseling from a psychologist at
her hospital and that really helped her get on
top of things again.
“Apparently my reaction was quite a common
one,” Kathleen said. “The counseling helped,
and my grandchildren really helped to bring
me around and pull me out of my negativity.
They really reinvigorated me.”
“It’s as though your life as you know it is taken
away from you and you have to rebuild your
life – one day at a time,” she said.
Kathleen’s advice to others: Get on with life
and enjoy it as much as you can!
Get on with life and enjoy
it as much as you can!
Lynda
Lynda, 52 • Dandenong
North, VIC • Diagnosed
in January 2006
My name is Lynda. I’m 52, married to Albert,
the love of my life for 31 years and the most
supportive husband I could ask for. We have
four children, Kate (23), Justin (25), Sean
(27), who still live at home, and Dion (29)
living in Colorado, USA who is married to
Sammie. We are blessed with three beautiful
granddaughters, Anya and Emma, and most
recently Mileigha.
I continued feeling well and got on with life
as normal. I pushed myself even harder with
a boot camp to be in top condition as I was
selected through work to be a volunteer for the
Commonwealth Games. It was the opportunity
of a lifetime. During that time my husband had
broken his ankle and I had to nurse him for
three months. By the end I was exhausted but
kept plodding along.
Two and a half years ago I wouldn’t have
thought life could change so much. I always ate
well, and kept myself fit by walking and going to
gym. I was always busy as a working Mum.
Whilst travelling to the USA when Anya was
born in June 2006, I noticed I had this irritating
cough all the time and hoped I wasn’t keeping
other plane passengers awake at the time.
Then at my son’s I found the air conditioner
irritated the cough and I had to have a window
open in the house and the car when it was on.
When we came home I just tried to ignore the
cough, thinking it would go away. By the end
of October I got a really bad chest infection,
which three courses of antibiotics didn’t fix. I
was worried. A chest x-ray showed something
and I was sent off to a chest specialist. He
decided to do a bronchoscopy. It drew no
conclusions and stunned the doctor as to what
this mass that looked like pneumonia was.
t life
I never would have though ays
alw
I
ch.
mu
so
nge
cha
could
fit by
ate well and kept myself
gym.
the
to
ing
go
and
g
lkin
wa
Around April 2004, I had an unusual blood
test followed by an abdominal CT with the
conclusion of possible Hodgkin’s lymphoma.
I was terrified. A pet scan showed a shadow
on my lung, diagnosed as a pneumonia scar,
the result of a really bad bout of flu a couple
of years earlier. The oncologist was sure there
was nothing wrong with me, I should go and
enjoy my life, but if I ever developed a cough
to do something about it.
So far they were sure it wasn’t cancer so in
January 2007 I had a lung biopsy. But yes, it
was the BIG C. He announced that lung cancer
patients don’t usually do so well but because
33
I was young and fit I had a better chance. I
thanked him for calling me young and giving
the glimmer of hope, then collapsed in a chair
in the quiet room and howled my eyes out. I
discovered I’d locked my keys in the car and
had to call my husband. I must have known
something.
ling me
I thanked the doctor for cal mer
glim
the
me
ing
giv
young and
in a
of hope... then I collapsed
.
out
s
eye
my
led
how
chair and
A lower lobectomy was performed and I had
a 10cm mesothelioma. I felt good. Three
months later I had an intense three months
of chemo. I hated being sick and the way I
looked. Towards the end of treatment I had my
50th birthday combined with my daughter’s
21st. I was determined I was going to have fun
even though all I felt like doing was lying down.
I had friends and relatives from overseas and
interstate come for it. We had the best night.
A month later I had the scare of a pulmonary
embolism (large blood clot) on my lung, a
side effect I found out later quite common so
the rehab doctor tells me. A week in hospital
and warfarin for six months afterwards fixed
that. “Good news you are cancer free,” is
like music to your ears and you feel you have
another chance with life once again.
cer free” is
“Good news you are can you feel
and
s
like music to your ear
with life.
you have another chance
At Christmas my cough returned slightly and
I kept my suspicions to myself. To distract
us we shouted the kids home from the USA.
A follow up scan in February showed it had
come back as non-small cell lung cancer.
We were devastated. There’s no easy way to
tell the family so we just came right out with
it. The kids found it hard to talk about it and
34
confided in their friends as they didn’t want to
cry in front of me for fear of upsetting me. We
eventually came to an agreement that it’s ok
to speak and cry as it helps me to know how
they are all coping.
The oncologist then suggested a targeted oral
cancer therapy which was a tablet you took
once a day. At the time, it was expensive (it’s
now on the PBS) but my work was absolutely
marvellous. They rallied around with a raffle
especially for me and handed over funding
towards it. You have no idea what that did
for my family. The drug stabilised most of
the cancer but a couple of cells of a different
strain kept growing.
After six months, a month travelling over 8,000
kms on our motorcycle, I became ill with the flu
and for various reasons I changed oncologists.
Don’t ever be afraid to get a second opinion, it
can make a huge difference to your health and
attitude.
a second
Don’t ever be afraid to get huge
a
ke
ma
can
it
.
n..
inio
op
attitude.
difference to your health and
It was decided I would have a different chemo
treatment. This drug made me extremely
tired, depressed, I didn’t care much for food,
and my hair thinned. Work gave me anytime I
needed and I returned when I could. After three
treatments it didn’t change a thing.
I then tried yet another chemo treatment.
I was told I would lose my hair quickly, but
it thinned gradually and I still have a small
amount. This treatment was better for me,
only the muscle pain side effect would keep
you grabbing for the pain relief. It gave me a
ravenous appetite, minimal nausea of which I
handled by chewing crystallised ginger (instant
relief) and I found dry ginger ale easy to drink.
My other support network is our Shearwaters
(Ulysses) Motorcycle Club. They are our
extended family. They have not only supported
us emotionally, but provided the suggestion
of the Wild 08 ride to raise money for the
Kylie Johnston Lung Cancer Network. They
approached me to do something to help find
out more about lung cancer and the funds
would go to whom I wished. It was during my
research that I read about Kylie and it gave me
inspiration from her enthusiasm on the hot air
balloon trip in the Simpson Desert and what
she did for lung cancer research.
I am so grateful and lucky to have such a
wonderful network of friends and family.
Without them I don’t know if I would have
gotten this far still smiling and planning.
to have
I am so grateful and lucky friends
of
rk
wo
such a wonderful net
I don’t
and family. Without them this
know if I would have gotten
ng.
far still smiling and planni
and grab those hugs when you need them.
I hate the way I look some days, but my
girlfriend took me along to the ‘Look Good,
Feel Better’ program and it does wonders
for your ego.
...don’t ever give up,
work as long as you can,
keep planning,
pamper yourself,
cry if you need,
laugh heaps,
d them.
grab hugs when you nee
To Albert, I will always love you with all my
heart. You are my best friend and soul mate.
To Dion, Sean, Justin, Kate, Sammie, Anya,
Emma and Mileigha, I am totally blessed and
love you.
A special mention to Amanda, Cathy and
Kerry, Susie and my dear sister Angela and
sister-in-law Stefanie.
At present I am having a break from chemo, it
has shrunk quite considerably and stabilised.
I am having tests to see if I have a particular
active gene, done in Boston with the sample
they kept from my lung to see if I am eligible
to go on a trial to have a new drug. I am
hopeful everyday of something new.
I take 2ml of Ordine 2 at night to settle
the cough. Apart from that I am well. After
twenty years I decided to retire from work
to do unfinished things whilst I am still well.
We went overseas to America to visit the
granddaughters, and Austria (where my
husband was born and has never been
back) for six weeks holiday.
I will do anything to stay in this world a bit
longer, don’t ever give up, work as long as
you can, keep planning, use all those favours
owing if people want to help, pamper yourself,
cry if you need, it relieves a lot, laugh heaps (it
takes a while in the beginning to laugh again)
35
Bruce
3
nt, QLD • Diagnosed in 200
Bruce, 61 • Sandstone Poi
Hello, my name is Bruce Giles and I have
mesothelioma.
I was angry at the news and wanted to kick
a wall or something.
I am 61 years of age, am very happily married
to Sharyn and have two beautiful daughters
Deborah and Karen.
Sharyn and I left the hospital with our minds
in a daze, walked back to the car, held each
other and had a cry.
Deborah is married to Aaron and they have
two children, Kiara aged 5 and Finn aged
17 months. We love spending time with the
grandchildren. Karen and her partner Neil
enjoy working during the week, playing sport
and raising cattle in their spare time.
Next day we told our family and friends who
were also shocked.
We are a very close family.
It is hard to accept that you have a terminal
disease when there is no pain or other
physical injuries. I found one of the hardest
things to deal with was a feeling that I was
letting my family down.
I have always been a reasonably active person
and a scuba diving instructor since 1974.
Diving was my passion.
I guess our initial reactions were normal but
we couldn’t change the diagnosis so it was
life as usual because “it wasn’t going to
beat us”.
I started my career in the steel industry in
Newcastle as a fitter and machinist, and then
changed to air conditioning after studying
mechanical engineering, moving to Brisbane
in 1972.
that I was
I came to the conclusion
my life to
of
t
res
going to enjoy the
friends.
and
ily
fam
h
wit
est
the full
After a fairly easy dive in March 2003 I felt
very tired and short of breath. I went to see
my doctor who gave me a spray for 6 weeks
but it made no difference so x-rays and a CT
scan were done. It was found that my right
lung had collapsed because of fluid in the
pleural cavity.
A thoracic specialist drained the fluid and took
biopsies. I was diagnosed with mesothelioma
- it was terminal and I was given six to twelve
months to live.
Sharyn and I were devastated, “it can’t be
true, doctors are wrong, why me?” I guess
36
I came to the conclusion that I was going
to enjoy the rest of my life to the fullest with
family and friends.
Unfortunately the fluid returned so I had an
operation called a pleurodesis where the fluid
is drained and talc powder is used to glue
the lung to the pleural lining. The idea is to
stop the irritation of the lung by the tumour
thereby reducing the amount of fluid build up
and making it easier to breathe.
This didn’t work in my case and in July 2003
I developed blood clots in the left lung and
leg, which were treated in hospital, and I now
take warfarin every day.
It was then suggested by my oncologist
that I should try chemotherapy using an
experimental chemotherapy drug.
My family, especially Sharyn has been
inspirational to me. I love them. They are
my life.
I agreed and had chemotherapy over a period
of 18 months and a port-a-cath fitted. I found
that during this period I was very tired and got
a bit depressed about the third day after the
treatment.
I continue to have great support from my
oncologist and her staff.
re
Simple things become mo ore
bef
e
aus
bec
you
significant to
nted.
you just took them for gra
I had constant pins and needles in my feet,
and my legs felt cold even on the hottest of
days, mainly when I lay down. My feet have
never been ticklish but they are now.
I had some nausea during this time but it
was well controlled by drugs. My taste buds
changed and my favourite foods didn’t taste
very nice anymore, even red wine which was
disasterous. This made it very difficult for
Sharyn when preparing my meals because I
couldn’t tell her what I felt like and would often
change my mind.
When I was taking the steroids I felt like I
was on a high, couldn’t sleep. So I booked
holidays and bought things on the internet,
a lot of fun, much to the amusement of my
family. We still joke about it.
The chemotherapy also lowered my immune
system and affected my fitness. I dislocated
my left shoulder twice, had shingles, meningitis
and numerous skin cancers removed.
I retired in 2004, bought a caravan and
started to travel in Australia and overseas.
Simple things become more significant to
you because before you just took them for
granted.
The truth is that I can still do nearly all the
things I used to do except for running up a
hill, but I can walk up it. Just have to stay
within your own ability.
I often talk things over in my head because I
get all these different thoughts one after the
other. By doing this it helps me put things in
order so to speak.
I know that my family and friends are also
feeling my frustrations from time to time and
are the first to help.
You must believe in yourself and set goals.
WHAT DO I DO?
I accepted that I can’t change the outcome
I maintain a positive attitude
I try to stay reasonably fit – gym, bike ride,
walking
I believe my professional advisors
I have regular check ups
I don’t second guess
I drink red wine
I travel
I have fun
I don’t eat fat
I try to live a normal life and do what I can
do comfortably
I am a radio operator at volunteer marine
rescue, Bribie Island
SUPPORT IS VERY IMPORTANT
You need your friends
Family
Professional team
Most of all, you need your partner
It can be very tough on your partner, don’t
lose sight of that
Don’t be bitter, be positive
Most of all, live and enjoy life
I wish you and yours the very best of luck.
lf
You must believe in yourse
and set goals
37
Natalie
For a more detailed, filmed
interview with Natalie visit
www.kjlcn.org.au
y 2006
D • Diagnosed in Januar
Natalie, 71 • Camp Hill, QL
My name is Natalie. I have three sons, and
four grandchildren - three boys and one girl.
All my boys and their families live no more
than twenty minutes drive from my place. We
have always been a close family and see one
another quite frequently. As I like to entertain,
we share many meals together and enjoy one
another’s company.
I was diagnosed in January 2006 with stage
3B adenocarcinoma of the left lung…never
having had a cigarette in my life.
I actually accepted the news in a positive
manner and have not worried about it. I feel
extremely healthy and have continued to live
as I would have done before being diagnosed.
The hardest change to accept was giving up
work. My oncologist strenuously encouraged
me to retire from teaching, something that
I loved doing every day of my life. Dealing
with children in a secondary school has
always been a challenge, but one with great
satisfaction. However, I still keep in contact
with the school, and do some voluntary work
at a local primary school.
I have also continued with many other activities
between treatments. Frequent dinner parties
(a passion of mine), skiing, ballroom dancing,
and travelling including South America, Machu
Picchu, Bolivia, the crusader trails in Jordan,
Syria, Lebanon and many more. Journeying to
these hands on and adventurous places are
achievable if the desire is there.
Telling my family and close friends was hard
for me as I could see the shock and surprise
in their faces as amongst many of our friends.
I was the only one that did not smoke and
was the most active. After discussing it, the
boys all wanted to speak to the doctor about
it and ask questions. Knowing how positive
I am in everything I do, there was now no
need to discuss it anymore. Life continues
38
as though there is no problem, I keep setting
goals…always something to look forward to.
I have had two different types of treatment.
Chemo and then my oncologist put me on
a daily oral cancer therapy which I call “the
miracle drug”. Both have been successful on
a short term basis. I have been very pleased
with the results and have experienced very
few side effects. Although with the tablet
some effects have been strange. My hair has
always been short and straight, however it
changed and became a typical afro style tiny, very tight curly, frizzy hair and extremely
thick. Most distinctive!
My lifestyle has not really changed much. Just
trimming my hedges takes a little longer. I also
find it harder to bend down to pick up the
rubbish. Coughing is becoming a nuisance
and at the moment I am back on the chemo.
I credit my continued survival to my positive
outlook and making and achieving short term
goals.
Words that I would share with other lung
cancer patients would be - be positive and
remember that every day new treatments
and cures are being discovered by groups of
very talented and dedicated scientists and
researchers. Even during the three years since
my diagnosis much has been improved on.
allenge life”.
I believe in the motto “ch
My mother was a great inspiration to me.
She was a real academic and had such an
enquiring mind, passion for learning and a
desire to achieve the best there was. One
thing which has always remained with me
was her “love for life”.
This is my story.
Lesley
Lesley, 45 • Doncaster, VIC
Where does the story really begin? I could
go back to 2002, when I was diagnosed with
a stage 2 breast tumour. Or I could go back
further to the early 80s when I nursed my
mother during her journey with breast cancer,
which led to her death. Or, I could start late
2008 at a time of my life when everything
was falling into place.
My partner Chris and I had just bought a
house and land package ‘off the plan’, and
along with my 5 year old son Dylan were very
excited about the future. I had not long got
my motorbike licence and was very excited
about joining forty of my ‘breast friends’ on
a motorbike ride/breast cancer peer support
event called Amazon Heart Thunder, planned
to leave Brisbane in May 2009 on a seven
day trip to Sydney.
t I had
I had felt a little smug tha
... as
cer
can
ast
conquered bre
ual
ann
r
ula
reg
my
long as I had
s...
und
aso
ultr
and
mammograms
I had the good fortune of encountering one
particularly amazing woman in the early days
of preparing for the Amazon Heart Ride.
Tanya was the first person I had ever met
who had metastatic cancer. At the time, it
shook me to the core and made me sit up
and pay attention to what my own body
9
• Diagnosed in January 200
was telling me. Up until then, I had felt a little
smug that I had conquered breast cancer
and as long as I had my regular annual
mammograms and ultrasounds…I’d be ok. I
procrastinated about making an appointment
with the breast specialist, but finally did early
in December 2008.
It came as a bit of a surprise to discover that
I had a new primary breast cancer in the
opposite breast, yet at the same time I felt
very calm and relieved. “Only breast cancer,”
I thought to myself. I can handle this! Though,
my specialist wouldn’t let it rest there, as I had
mentioned to her in my first appointment that
I just didn’t feel right, that I felt like a ticking
time bomb. The week before Christmas, there
was much rushing around having CT scans,
chest scans and bone scans.
The absolute terror of being told I had
enlarged lymph nodes in my chest and neck,
and what looked to be scar tissue in my right
lung was incredible. After consulting with a
thoracic surgeon, we were hoping like heck
that it was something like sacordosa, or
even lymphoma. A PET scan was done two
days before Christmas and we weren’t able
to get results until after New Year’s as all the
specialists were on holidays. It took a bit of
chasing to finally get the thoracic surgeon
to schedule a biopsy, but I finally went in for
surgery on 13 January 2009.
39
A few days later, we got the news. Non-small
cell lung cancer which was also present in the
mediastinal lymph nodes and neck (stage 3b).
The thoracic surgeon advised that surgery
to remove the lung or the lymph nodes was
‘off the table’, and referred me to a medical
oncologist. Much of the next couple of weeks
was a blur, though I know I was determined
to stay positive and arm myself with as much
information as possible.
It wasn’t until we met with my medical
oncologist that I started to feel a little saner
and calm again. I knew straight away I was
in good hands and felt comfortable in asking
him everything and anything about my
condition, treatment as well as being able to
run by him any nutritional or lifestyle changes
I wanted to make. Both my doctor and his
personal secretary have been absolute rocks
of support.
e
I have to say, the whole tim
and
c
isti
my mood was optim
my belief in healing strong.
I started chemo the last week in January
2009. I think I must have called the chemo
unit daily during the first week as I wasn’t
managing the side effects well at all. The
nursing staff were also rocks of support and
nothing was too much trouble. Within days,
they had my side effects well managed and
I virtually sailed through the next few months
of treatment. OK, so there were small niggly
things like allergic reactions to the chemo,
and a six day stint in hospital after my 45th
birthday as my neutrophils (white blood cells)
‘dropped through the floor’. Though I have to
say, the whole time my mood was optimistic
and my belief in healing strong.
While undergoing chemo, I made time to
attend a three day meditation and healing
retreat at the Gawler Foundation. Learning how
to meditate has been a huge part of my healing
journey, as was meeting so many inspiring
people who were also experiencing life limiting
conditions. The experience helped me foster
40
a new outlook on healing, and how to live well
physically and more importantly, spiritually.
With the help of a couple of CDs and books,
I’ve managed to keep up the practice of
mindfulness mediation. I’ve also tried very hard
to change my eating habits, though sometimes
this causes more stress than it is worth. One
commitment I made to myself on leaving the
retreat was to embrace all healing options
available to me, mainstream medicine as well
as alternative and complimentary.
Once chemotherapy finished in late April, it
was time to start radiation treatment. At first,
the radiation oncologists were hesitant to
offer treatment, due to their concerns that
my brachial plexus nerve could be damaged
due to the lifetime load of radiation being
exceeded. Back in 2002, I had received
about 50 Grays of radiation to my neck and
chest. After much pushing on my part, and
an exhausting round of second opinions,
they decided to give me a second PET scan.
The team were very excited to discover that
I had had a ‘complete metabolic response to
induction chemotherapy’ and on that basis
decided it was worth having a shot giving me
radiation treatment.
They designed a treatment plan to minimise
the risk to my brachial plexus nerve. It was
also decided that I should have further
chemotherapy concurrently, on a weekly
basis. For the first few weeks, I found myself
bumping into the same familiar faces at the
chemo clinic and at radiotherapy. It never
ceases to amaze me the good humour and
positive outlook cancer patients have. The
last couple of weeks of treatment were a
little heavy going as the side effects kicked
in. While I expected to feel fatigue, I wasn’t
prepared to feel as tired as I did. Also, I
had no idea that I would lose my voice or
have trouble with swallowing. At the time
of writing, it has only been a few days
since finishing treatment, and I am waiting
patiently for my voice to return. Eating was
a bit of an issue, though I did manage on
a soft food diet. I’m still not eating a lot of
solid food, but learning how to chew really
well. Meantime, I am driving my darling Chris
crazy as I make all sorts of dreadful noises
when I am sleeping.
So, what happened to Amazon Heart Thunder
you ask? Well, treatment became my first
priority and I gave up my opportunity to go on
the ride to someone else who would benefit
from it. I didn’t miss out on a thing, as my
“Sistas” kept me in the loop, continued to
support me and included me in everything.
I even flew to Sydney to meet them at the
end of the journey and got myself in the local
paper! I’d be lost without them, in particular,
my ‘breast friend’ Jo Lovelock. Not only is
Jo a breast care nurse and Support Group
Coordinator, she also manages to work as a
midwife, and take care of her marvellous family.
She is my favourite ride buddy, and I find her
laughter and generosity infectious.
Speaking of breasts, the next step in my
treatment plan is to have the tumour in my
left breast removed. I’m scheduled to have a
lumpectomy but I’m not expecting anything
out of the ordinary and know I am in the
good hands of my surgeon.
th...
I certainly do not fear dea
well.
life
my
g
what I fear is not livin
Where are my friends and family in all of
this? In many ways, I suspect the journey
has been harder for them than me. It is has
been hard for them to move past feeling
fear, and that fear is largely based on not
understanding much about cancer other
than people do die. I likely haven’t made it
easy for them as I don’t want the focus of
my relationship with everyone to be a blow
by blow account of my treatment and status
of disease. I am also very independent by
habit, and this makes it hard for my friends
and family to find ways to be involved and
‘help’. The more time we focus on what
cancer is doing means there is less time we
are focusing on actually living well. Death is
inevitable for all of us, irrespective of what
disease we may or may not have, or risks we
take in our lives. So why do we live in fear of
what is going to happen ‘one day’? I certainly
do not fear death....what I fear is not living
my life well. It is of paramount importance to
me that I inspire my darling son to live well,
to live passionately, with wisdom and insight.
To live each day with joy, and with purpose,
even if that purpose is to simply delight in the
sunshine and fresh air.
with
...live each day with joy, and
is to
se
po
pur
t
tha
if
purpose, even
..
ne.
shi
sun
the
in
simply delight
The journey so far has been extremely
positive. There have been dark times, though
these have been few. I have learnt so much
from so many kind, loving, and caring people.
New friendships have developed, some old
ones have come to an end when tested, and
others have undergone a period of growth.
Having cancer hasn’t made me a perfect
person, or a living saint. It has helped me to
become a ‘real person’. I no longer try too
hard to be ‘everything’ to ‘everyone’, and I
hope I have learnt to be more pragmatic and
gentle towards people.
I have no idea what the future holds, and
frankly, I think that is the way life should be. I
still get out of bed everyday looking forward
to what is ahead of me. I believe 100% in
my ability to heal fully, or if not heal fully to
live well for a very long time with cancer. My
family and I are still excited about moving into
our new house in the New Year. There are
many motorbike trips and holidays planned.
There is a large list of things my son and I are
planning to do. It’s all about keeping it real,
living normally and well for as long as good
health allows me to. Isn’t that all any of us
can do?
me a
Having cancer hasn’t made
saint. It has
perfect person, or a living
l person’.
helped me to become a ‘rea
41
Barry, 68 • Logan Village,
Barry
I have always been in good health but in
November 2007 I had surgery on my ankle
to remove a grade 4 melanoma. Once it had
healed I returned to the gym, which I had
been doing twice weekly for some years.
I noticed that while previously I could run on
the treadmill for 40 minutes that now I was
becoming fatigued after 10 minutes with a
slow recovery. I also developed a dry, continual
cough at the same time. Apart from that, my
general health at this time was excellent.
I consulted with my medico who was
convinced that this was exercise-induced
asthma. So over the next month I was
given a number of different inhalers and
told to exercise as normal. However, my
exercise tolerance continued to worsen. After
going through cardiac stress tests with no
appreciable change to my health I asked for a
referral to a thoracic specialist for assessment
and chest x-rays. This was done about five
months after the initial onset of symptoms.
The results of spirometry and x-ray indicated
a restrictive lung disease. There was a primary
mass in my left chest with secondary lesions
throughout both lungs. Biopsy results showed
the cancer to be an adenocarcinoma.
Because of my training (I am a veterinary
surgeon) I was fairly certain that the probability
was the presence of some form of malignancy.
I had read the x-rays myself before giving
them to the specialist and the diagnosis was
42
e 2008
QLD • Diagnosed in Jun
obvious. However, it was somewhat surprising
as I had never been a smoker, and had led a
very active physical life with a well balanced
diet and responsible alcohol intake. I accepted
fully that I had a malignant disease and just
got on with my life. Because of my poor lung
function I retired immediately from veterinary
practice.
a malignant
I accepted fully that I had h my life.
wit
on
disease and just got
We told our family and friends immediately
and in the majority of cases as most had a
strong medical background and training there
was no need to explain the disease other
than the correct terminology of the cancer.
While the reaction was generally balanced
the most common reply was that I had never
been a smoker and that I was the fittest
cancer sufferer they had known.
After discussions with my oncologist as to the
prognosis and available options I decided to
go with a daily oral cancer therapy. I noticed a
marked improvement in health and reduction
in coughing within six weeks of beginning
treatment.
For the initial period of four months post
diagnosis I was virtually house bound owing
to the debilitating effects of the cancer on
my ability to perform normal tasks. My social
life was reduced but not abandoned and
relationships with friends and family were
strengthened.
However, after four months I was playing golf
again and walking the course, something I
could not do prior to treatment. I also started
playing social squash again and was only
halted in this when I tore a hamstring (old
age). I was back to leading a normal life in
terms of work and play. I was sleeping much
better and totally relaxed with my disease.
ssed due to
I had been reasonably stre discussed
I
so
the sale of my practice
partner.
my
h
wit
nge
cha
a lifestyle
The major side effects of the treatment were
diarrhoea, which lasted about five months,
although this may have been exacerbated
by the juices I was taking. I have developed
a generalised dermatitis and had some nasal
bleeding as well.
Overall, the result has been excellent and far
and above my expectations.
Prior to my diagnosis I had been reasonably
stressed due to the sale of my practice so I
discussed a lifestyle change with my partner
and we agreed to become vegetarians and
began researching alternative methods of
supplementary support.
I consulted with a naturopath and
attended a twelve week course run by the
Queensland Relaxation Centre based on the
experiences and teachings of Ian Gawler
and which covered all aspects of cancer
and its treatment. The group consisted of
twenty people with varying malignancies
and at various stages of progression. This
was a wonderful leveling experience seeing
how other people were handling their
respective problems. We had the sobering
experience of losing one of our group, a
young fellow of 28 with a wife and two
very young children, and this reinforced
in my mind just how lucky I was. A major
part of the course was the introduction to
meditation which I have religiously followed
each day since, and to which I attribute my
calmness and peace of mind.
My day usually starts at 6.30am with 45
minutes of meditation. After feeding the
animals I have breakfast of fresh lemon juice
and organic oats as well as drinking Herb
Robert Tea and eating some of the fresh herbs
I have growing in the garden. In the morning
I usually read and get up to date with my
emails. I have an organic lunch and then work
around the property in the afternoons. Evening
meals are based around soy as protein intake
with a wide variety of vegetables.
Through the day I drink dandelion tea
and distilled water, and take all my other
supplements (zeolyte, selenium, spirulina,
vitamin C, bromelain, curcuminoid forte,
digezyme, co-Q Max, mega B vitamins,
vitamin E and fish oil capsules). I also make
up concoctions of juices with spinach leaves,
apple, carrot, garlic, shitake mushrooms,
beetroot, echinacia and pawpaw.
My approach to life is now very laid back. I think
because of my meditation I have accepted the
disease and have been determined to get on
and enjoy each day as it occurs. Nothing tends
to worry me anymore and my relationships with
friends and family are much stronger. I tend to
take more notice of what people say and try to
involve myself more in living.
anymore
Nothing tends to worry me friends
h
wit
and my relationships
r.
and family are much stronge
My message to other people who have been
diagnosed with lung cancer is to be positive
and get the best help you can, depending on
your beliefs. Have a balanced outlook and love
of life. Just because you have been diagnosed
with a malignant tumour/s does not mean a
death sentence.
and love
Have a balanced outlook e been
hav
you
e
aus
bec
t
Jus
of life.
tumour
diagnosed with a malignant tence.
sen
th
dea
a
an
me
not
does
43
A family’s journey: Maggie (patient)
and Linda (daughter)
Maggie
My name is Maggie and I am 54 years
young. That’s right, I am not old but I am
young. I have been happily married for
33 years and have three children - Linda
(30), Diana (27), and Harrison (20). My
husband is the best husband anyone
can ask for. All his life, he has worked so
hard to give me all the wonderful things
life has to offer.
I am a very, very active individual. My
husband and I have a business. I also
help out my children with their lives and
their own businesses. I love my job and
doing things for my family.
In March of this year, I joined a gym and
had a personal trainer who was working
with me to strengthen my muscles and
to keep me fit. However on 30th March I
had a small sharp pain in my left chest like
a needle pressing into it. This happened
a few times that day. I had a very busy
day so I ignored it. That night, the pain
was still intermittent so I went home and
had dinner with my husband and son and
after they went to sleep I went to my local
hospital. I did not tell my family as I did not
want anyone to worry as it was probably
nothing.
When I arrived there, the routine questions
were asked but when I mentioned my
chest pain, they took me straight in to
see the doctor and then an x-ray and
blood test were ordered. An hour later,
the doctor saw me again and advised me
to take analgesics and that nothing was
44
9
W • Diagnosed in May 200
Maggie, 54 • Marsfield, NS
wrong with me. He told me that the blood
test went to another hospital and that the
results would be in about 4am. He did
not give me a letter to take with me as he
confirmed that I was well. I went home
and set my alarm to ring at 4am, and I
rang the same doctor and he told me the
blood test was normal. End of story.
Six weeks later I received a call from the
local doctor’s surgery asking me if I can
come in that afternoon. I said OK but
when I got home I started to prepare
the evening meal and put some clothes
in the washing machine, when my son
reminded me that I should see the
doctor. I hesitated to go, but then went
anyway. The doctor was waiting for me.
She took me inside and showed me a
report with my name on it. She explained
that it showed there was a lump on my
right lung about 35mm long. It also had
URGENT REPORT written on.
cer
I told her we have no can s
ent
par
nd
gra
My
ily.
fam
in my
lived to over 95.
When I saw this, I could not breathe.
My head felt faint. I told the doctor that
it wasn’t my report but only my name
- the information was right but it must
belong to someone else. I told her we
have no cancer in my family. I told her
my grandparents lived to over 95 so it
was impossible to be mine. My phone
kept ringing and it was my husband. I
kept hanging up on him as I could not
talk. Finally, I answered him, and when he
said “what’s wrong,” I said, breathing and
sobbing, “It is the letter c” - I can’t say the
word. I hung up on him. The doctor came
and put her arms around me and when I
refused to believe it, she said, “Okay, why don’t
we have another scan tomorrow. Maybe it is
a shadow or something”. She wrote a referral
for a CT scan and said that if they cannot fit
me in that morning to come back and that
she will come in and make sure they can do
it as we already had a delay of six weeks.
The next morning, my husband went to a
meeting and I went to have the scan done.
He joked about it as he said, “You’ll see that
there is nothing wrong with you. You will
outlive me”. After the scan, I had to wait
one and a half hours for the results. As soon
as I received it, I opened it while walking
the twenty metres to the doctor’s rooms. I
saw similar words and it was what we were
hoping it was not. It confirmed that I had
something on my lungs.
A hot sweat came rushing to my face and all
over my body, my heart started revving but I
was not going anywhere. I was sitting in front
of the doctor’s door and could almost hear
my heart, I had uncontrollable tears coming
down my face, my mascara was getting
smudgy. I was not prepared for this - what is
going on? I want to rewind my life and play it
slowly so I can understand this terrible movie
I am in. The door opened, I went inside and
gave the letter to the doctor. I burst into
tears, she held me again. A stranger to me,
she comforted me and calmed me down.
She rang several doctors until she got a
respiratory doctor who could see me within
two hours. I thanked her and I don’t know
how I left the car park, because when I was
on the main road I remember passing my
street, then at the roundabout I did not know
what to do, so I kept going, round and round three times around the roundabout. I rang my
husband, sobbing. He told me to pull over
and he was coming over straight away. He
assured me that it is probably something like
a shadow and not to worry.
My daughter Linda and my husband came
with me to the specialist. The doctor read
the report and said not to worry. She said
that there is a growth on my right lung about
35mm and that I had to have a biopsy on
Monday. I had the biopsy and Linda and
Harry came with me again to hear the results.
Harry was sitting on my right side and Linda
on my left. I only had to look at the doctor
to find out it was not good news. She said “I
am afraid it is malignant cancer”. I could not
speak, Harry took my right hand, and Linda
took my left. I started to break down, crying.
Harry and Linda were also in shock. How can
this be? No way, I don’t smoke. I was so antismoking, I had signs up everywhere at work.
How can this be? I did not hear much and
Linda took charge of what the doctor ordered
regarding tests. I remember, I wore my best
clothes and I looked fabulous. I did not look
sick or act sick. I had rosy cheeks, and what
more do you need?
I don’t
How can this be? No way, ng, I
oki
i-sm
ant
so
s
wa
I
smoke.
at work.
had signs up everywhere
That evening I switched my mobile off, took
the house phone off the hook, and drew the
blinds as I did not want to see or hear anyone.
I got a pillow and blanket and lay in the lounge
room with my family, we were all frozen. No
appetite, no conversation, stunned, in total
shock. How can this happen to me?
The worst part was waiting for results.
Meanwhile, I did not go to work, I could not
concentrate. My world turned upside down.
The worst part was telling my parents. How
can a child tell her parents that she has lung
cancer of all things? You can hide most
sicknesses or illness, but not lung cancer.
Four weeks after seeing the respiratory
physician, finally chemo and radiation started.
45
I was not comfortable with the comments
that the doctor made when I asked him about
the survival rate. He told me 12-18% survival.
In months, I would have 15-18 months.
What? Does that mean I am going to die in
15 months? No way! What is he saying, am I
hearing things? That day, Linda searched for
a second opinion. I had my third radiation at
6.30am and then went to meet the second
doctor. I felt more comfortable with this
doctor. I had the weekend to think about my
decision to change doctors and treatment as
I had radiation booked for Monday morning
at 6.30am. It was also my son’s 20th birthday
that Monday. I asked him what he wanted for
his birthday, he replied “For you to live”. OK
my decision was made for me. I decided to
change doctors and give this doctor a go. I
had nothing to lose.
y...
It was my son’s 20th birthda
d...
nte
wa
he
at
wh
him
I asked
”.
He replied, “For you to live
That week I also went to see a Chinese Herbal
Medicine doctor only five minutes from my
house. I felt comfortable and understood
what he was trying to do. He was trying to
get my immune system to fight the cancer. I
had to swallow 54 tablets three times per day
and on top of this I would take other Chinese
mushroom herbs, together with an elixir which
I pour into a milkshake.
By now, most of my Armenian community had
heard and was shocked that it had happened
to one of the strongest of people. I kept getting
messages of prayers, phone calls, private
messages on Facebook. It turned out that
everyone was supporting me, telling me how
positive I should be, advising me that I am
such a strong person that I will beat this thing.
I had many, many people, people I did not
know, people all over the world praying for me.
I started to feel very special.
46
I started to go to church and visit Mary
Mackillop. I knew that she was to be
Australia’s first saint and that she needed
one more miracle before she could be one.
I believed I was that miracle and still do. I
believed she could heal me. I imagined her
hand on my lung and that she was curing
me. I went to the shops and bought a large
canvas and an A4 photograph of Mary
Mackillop, a key ring for my car, a sun visor
and also a statue of her. I photocopied her
picture and started to create a portrait of her
on the canvas. I was receiving chemo when
I started this. It was a pleasure for me, when
I was not sick from chemo, and I dedicated
a lot of my time to this portrait. I completed
the portrait and had it beautifully framed and
drove over to give it to the Church. I asked
a passerby to help me carry it inside the
church and we placed it in front of her tomb.
I said a prayer to her and then went and saw
Sister Bridget who promised that they will
hang it somewhere and offered three tickets
to be inside the Church for mass on the 8th
August, 2009 for the 100 year anniversary of
Mary Mackillop’s death.
life with
Now I am on a journey in
home
at
sit
not
do
I
.
cer
lung can
self.
my
for
ry
sor
and moan or feel
Now I am on a journey in life with lung cancer.
I do not sit at home and moan or feel sorry
for myself. I am full of energy and I want
to help others with lung cancer. Not many
people know about it and I want the whole
world to know. Smokers have decreased
but lung cancer is on the increase. Why?
Does anyone know? I want there to be more
awareness of lung cancer. I believe that we
should all have a voice in doing so. I am
starting a lottery of one of the paintings I did
two years ago which is beautifully framed.
I also want to reach the business sector
to make donations towards lung cancer
awareness and research and early
detection. Now that my head is
more normal - I have had this
terrible sickness for the past three
months - I can see clearly and I
have my husband’s support to help
and do whatever I can to support
lung cancer awareness.
I have learnt that a person must be
strong, be positive and try to heal
yourself. There is an art to doing
that. You just have to imagine that
there is no cancer, and believe
and imagine yourself before cancer.
Fighting this thing is not easy. It
takes a combination of things, not
just one thing to fight it. It could
be chemo, radiation, Chinese
medicine, nutrition, prayers, God,
believing in miracles and most of
all, a loving family and friends’
support. My sister from Orange
County in the U.S.A. came to visit
me because I was sick and only
left last week. All these go hand
in hand. I have three children who
would be lost without me. I plan
on seeing their children. Yes, I
want to be a grandmother to them.
I want to hold them in my arms
and baby-sit them and take them
to the zoo and do fun things that
I planned before cancer. I love life
and I am too greedy to let it go.
I worked so hard in my life that I
want to enjoy the family and things
I have. It is now my time to enjoy,
except this cancer got in my way, I
am not going to let it take my life - I
will kill and destroy it.
One of us will lose.
is
It not going to be me.
Linda
Maggie’s daughter
Hi, my name is Linda. I live in Balmain with
my husband and led a ‘normal’ life until
recently when my best friend (my Mum) was
diagnosed with non-small cell lung cancer
(NSCLC).
No one in my family ever gets sick, in fact,
no one in my family dies of anything other
than old age (only recently, my two great
grandmothers peacefully passed away at
the age of 102 and 99 years old). My Mum is
one of four children; she has never smoked
and never been around smokers. She is fit
and active and everyone knows her by her
nickname, ‘Action Maggie’ because she just
never stops! Mum and Dad have worked
very hard to build their business. As us kids
are older now they want to start to travel
and they just got council approval to build
their dream home… then this happened…
(I suppose it doesn’t happen at a good time,
never is the best time).
Mum’s cancer got ‘found out’ much the same
way as others – it was an accident. Something
unrelated provoked a test which revealed this
asymptomatic terror in her body.
47
30 March 2009: Mum has a sharp pain in her
chest and goes to hospital at around 11pm.
They do some tests including an x-ray and
tell her she is ok to go home and to take
some pain killers.
13 May 2009: Mum gets a phone call on
the way home from work from her GP. The
doctor asks her to immediately come to see
her. She says she’s busy, can it wait until
tomorrow to which the doctor replies ‘no,
please come now’. The doctor explains that
she found a letter ‘floating around’ with my
Mum’s name on it. The letter is dated 30
March 2009, the day she got her x-ray. It was
not addressed to anyone and that’s why it
was lost for 6 weeks in the paperwork. The
doctor explains that the letter states there is
urgent attention required as there appears to
be a 35mm lesion on her right lung. My Mum
says that there must be a mistake because
the hospital told her she is ok and she should
go home and take an analgesic. A repeat
x-ray is ordered.
14 May 2009: Mum gets another x-ray. Same
thing – a spot on the lung. That same day,
Mum sees a respiratory specialist. A biopsy
is ordered.
20 May 2009: Back to the respiratory specialist
for the results. The worst is confirmed. It’s
malignant and its name is adenocarcinoma. The
respiratory specialist gives Mum hope – she
says that you need to be positive. She also, in
my opinion, ‘prematurely’ offers her hope of
surgery, that they will cure her, without having
done the work up and without understanding
the extent, if any, of lymph node involvement.
25 May 2009: A CT-PET scan is performed.
Around this time, Mum also starts to feel
pain in her back. She describes it as sharp
stabbing pains.
26 May 2009: Mum does a lung function test
so they can see if she would be fit for surgery.
48
27 May 2009: We all go to get the results
(Mum, Dad, and us three kids). Well, there is
some good news – it hasn’t spread outside
the lungs, but it has spread to some lymph
nodes. It appears to be a stage 3A. I rush
home and jump onto the internet, Google
searches tells me the prognosis is very poor,
I despair but then I find the Lungevity forum. I
find some hope because I see so many long
term survivors of advanced stage disease!
Chemo is expected to start next week,
followed by surgery.
the
... I despair but then I find
e hope
Lungevity forum. I find som term
g
because I see so many lon eases!
ge dis
survivors of advanced sta
1 June 2009: We meet the oncologist who says
he would like Mum to have a mediastinoscopy.
This will provide a ‘pathological’ diagnosis and
help map out a more accurate treatment plan
which may involve surgery first, then chemo or
maybe chemo then surgery.
2 June 2009: We meet the thoracic surgeon
and the mediastinoscopy is performed. Mum
spends three days in hospital recovering.
5 June 2009: The thoracic surgeon requests
a CT scan and Mum gets it done.
10 June 2009: We meet both the oncologist
and respiratory physician so we can find out
when treatment will start. The nervousness
is mounting. It’s been four weeks since it
was discovered (10 weeks since it should
have been discovered) and no treatment has
begun. The doctors tell us they have some
bad news, the CT scan showed a bi-lateral
pleural effusion. This means surgery is ruled
out. Mum is re-staged to 3B ‘wet’. A new
plan is developed, one which no longer
includes surgery (which had been touted as
the best chance for a cure). Mum is to have
concurrent chemo and radiotherapy.
Later the same day, we meet the
radiotherapy oncologist. He tells us the
prognosis is very poor. He tells us Mum
will most likely die in twelve months if she
has no treatment and fourteen months
with treatment. He tells us there is little
hope for a cure. He destroys the positive
thoughts which we had lovingly planted
in my Mum’s mind – we will just have to
start again and plant some more!
12 June 2009: An old friend who Mum
has not seen in over five years comes to
visit. She has heard the news and insists
that Mum see the Traditional Chinese
Medicine (TCM) doctor who helped her
husband overcome prostate cancer. That
same day, Mum asks for an appointment
and the doctor fits her in that night. He
tells her that he will help her T-cells fight
the cancer – he will ‘wake up the guard
dogs’ in her body to fight away the bad
cells. Mum starts to see the TCM doctor
weekly and he makes her feel better
and makes her laugh. She has weekly
acupuncture and she takes five different
types of Chinese herbals pills (little black
ones, eleven of each, three times per
day!). The pain is gone! (Is it the herbs or
is it the placebo effect?) She also changes
her diet. Now she doesn’t eat any red
meat, dairy, potatoes or eggplant. She
eats organic food as much as possible,
lots of fresh salmon (no tuna) and chicken
and legumes, especially mung beans.
17 June 2009: FINALLY, treatment starts
with the concurrent chemo and radio
regime. Weekly chemo and daily radio.
We show the oncologist the herbs Mum is
taking to make sure it does not impact on
the chemo. All is good and the oncologist
is supportive of Mum’s decision to use
complementary TCM.
I discover an online world of lung cancer
survivors, fighters and carers and tap into
the online resources. I start to do my own
research. I subscribe to various thoracic
journals, oncology journals, medical
research search engines, articles, and read
clinical trials on treatment approaches,
drugs, and complementary therapies. I find
the cancergrace website and tap into other
online forums and sites. I start to ask lots
and lots of questions:
hy didn’t we test the fluid to check it
W
was malignant?
If Mum responds well to chemo/radio
and the tumour shrinks and the lymph
nodes are sterilised, can we have surgery
afterwards? (No, once you have radio
on the mediastinum area, most thoracic
surgeons won’t want to operate on you
– too risky).
So why did we close the door on the
surgery option and start radio if we are
not sure if it is malignant - does this not
restrict our treatment options?
How did this pleural effusion so suddenly
develop? It was not there on 27 March
2009 on the CT-PET but somehow
only appeared a week later after the
mediastinoscopy on the CT scan.
Is it common to get a bi-lateral pleural
effusion when the tumour is localised
on only one side?
What about my Mum’s rheumatoid
arthritis – can it cause a pleural effusion?
Is it possible that surgery related trauma
could have caused the pleural effusion
seeing as though it only appeared days
after the mediastinoscopy?
How many patients have you treated
with the chemo and radio regime and
how many of them were the same stage
and age as my Mum?
Oh and by the way, why did it take so
long to start treatment?
49
Where I was scared of learning about what
this cancer is, now I feel armed with the
knowledge that there are others who have
been down this very same road that my Mum
and my family are on. Now I am in battle
mode for Mum. This is not going to happen
to our family without a real fight! We have
a family meeting at Mum and Dad’s house.
We decide together as a family that we are
not going to accept the prognosis from the
Doctors. They have based it on statistics and
Mum is not a statistic. I persuade Mum to
seek a second opinion and I manage to get
an urgent appointment for 19 June 2009.
ily
We decide together as a famept
acc
to
ng
goi
not
that we are
ctors.
the prognosis from the do
19 June 2009: Mum and I see another
thoracic surgeon for a second opinion. He
looks through Mum’s file and scans and says
that he will talk to Mum’s current doctors
then call Mum back with what he thinks.
Later that afternoon, we get a call from the
doctor with the second opinion. He agrees
that there is a reasonable chance the pleural
effusion is not malignant. Mum is a good
candidate for surgery – she is young, fit,
otherwise healthy and hasn’t lost too much
weight, the lymph nodes on the opposite
side of the tumour are clear, and if the pleural
effusion is not malignant (which we will test
after the chemo) then there is a good chance
that she could have surgery. BUT we would
need to immediately stop the radiotherapy.
Mum has the weekend to decide what to
do as her next radiotherapy session is early
Monday morning…So do we stop concurrent
chemo + radio in hope for surgery that may
not even be a possibility and risk further spread
in the interim whilst neo-adjuvant chemo is
pursued OR do we continue with the current
journey and close the door on future potential
for surgery?
50
We (Mum) choose to stop radiotherapy, we
change doctors and hospitals. My Mum is
now under the second opinion doctor’s care
- the other doctors are all very supportive
and understand Mum’s decision. They are
interested in her progress and want to be
copied in on future reports. They care for Mum
until she is ‘handed’ over to the new hospital.
26 June 2009: The new chemo regime starts.
The dose is 3.5 times stronger than when it
was being taken with concurrent radio. Now
it’s once every three weeks.
Mum is taking her herbs three times per
day. We also find another one called PSK (a
mushroom) which the Chinese Doctor is ok
with. It’s been two weeks since chemo and
Mum has had no side effects (just one day
of fatigue, six days after chemo) – life is great
and she is doing all the things she would
normally do. We start to keep a food log
book to track what Mum eats because she
has dropped down from 68kg to 63kg in the
last eight weeks.
8 July 2009: We meet the new oncologist
who will be taking over from the next round
of chemo. He listens to Mum’s chest and
tells her it sounds clear. He thinks the fluid
may be gone (but that we will see when we
have the follow up scan). Mum says that
she is no longer breathless when she runs
up the stairs. He tells us that Mum will do
three rounds of chemo then have a CT scan
to see how things are going. Depending on
the scan, Mum will have another final round
before surgery. He says we need to take it
one step at a time. It all depends on if the
cancer tumour shrinks or not.
17 July 2009: Second round of treatment with
the three week cycle at the new hospital. Mum
weighs in at 67.8 kgs. The weight she’s lost is
back.
whole family
The most painful part for the s the first
wa
m
and especially for Mu
like zombies...
three weeks. We were all
ething
but then it passed and som r us.
ove
e
cam
rgy
ene
happened
ess and let
You feel a sense of calmn forward.
k
loo
and
’
me
y
go of the ‘wh
Reflecting on the journey so far, the most
painful part for the whole family and especially
for Mum was the first three weeks. It felt like
the world was ending, we were certain our
Mum was going to die and we kept asking
why. We were all like zombies…but then it
passed and something happened – energy
came over us. You feel a sense of calmness
and let go of the “why me” and look forward.
Now there is a new ‘normal’ and it includes
living and fighting lung cancer. Life is 10%
of what happens to you and 90% how you
deal with it. I hope you have the strength and
courage to deal with your diagnosis or that of
your loved one. Keep a diary of questions you
want to ask your doctor then don’t be afraid
to ask them.
postscript
After the three rounds of
chemo, Mum’s Oncologist
orders a CT scan to see the
response to treatment and
on 24 August 2009 we got
the wonderful news we were
hoping and praying for: the
bilateral pleural effusion has
completely gone and the
tumour has shrunk significantly!
The next step in this journey is
a fourth and final pre-operative
round of chemo then surgery
in the next few weeks…
For a more detailed, filmed
interview with Maggie and
Linda visit www.kjlcn.org.au
51
Phil
1
200
ast, QLD • Diagnosed in
e Co
Phil Martyn, 61 • Sunshin
I’ve been a builder on the Sunshine Coast for
many years and I’ve also worked in Brisbane.
I was first diagnosed with mesothelioma in
2001 (approximately nine years ago) at the
Prince Charles Hospital. My first thoughts
were that it was just another small set back in
life and that I would get over it. I felt fine and
confident that I would make a full recovery
and move on. Little did I know upon reading
up and researching this cancer, the challenges
that lay ahead.
I was married for 35 years (now divorced) and
have two sons, Troy and Grant and a daughter,
Tia. I have six beautiful granddaughters –
Ebony, and Maci, Brianna and Kayli, and Lexi
and Demi – they are my pride and joy.
e of me
My family is very supportiv
rney.
jou
my
on
and helps me
We called a family meeting and told everyone
my prognosis and about what lay ahead for
me – the outlook was not good. The doctors
had given me six months to two years to
live. Tears were shed from all in the family –
reassuring hugs were shared. My family is very
supportive of me and helps me on my journey.
52
My next thought was “What do I do, where
do I go?”
Somebody told me to read Dr Ruth Cilento’s
book, “Healing Cancer”. I began reading
and about one third of the way through, I
decide to give her a phone call at home and
ask her some questions. I asked her when
I could come down and see her. Dr Cilento
asked “Have you read my book yet?” When
I admitted I hadn’t completed the book she
told me to finish it first and then we would
talk about a meeting. I felt so honoured that
this tremendously eminent doctor would
see me.
At our meeting, Dr Cilento was very direct
and to the point. She took all my details
and then proceeded to give me details of
natural medicines and vitamins to take. Her
parting words to me were “I have given you
vitamins and natural medicines to fix you up
– if somebody says to take or do something
else, do not ring me”. We agreed to a follow
up consultation in twelve months.
I headed home ready to take up the biggest
challenge of my life. I was too young to
leave this world and this was not going to
beat me.
this world
I was too young to leave
beat me.
to
and this was not going
I have sacrificed a lot. I changed my diet
– gave up all alcohol (VERY HARD – the
alcohol!).
Twelve months later at my visit with Dr
Cilento she said she was very pleased with
my progress and told me to come back
in another 12 months if I thought it was
necessary.
I am very grateful for the support and care
my first wife Alison has given me over the
last five years. I have met a loving, caring,
beautiful lady, Glenys whom I have shared
the last three years with and we have just
become engaged. Glenys is very supportive
and I would not be here today without her
support.
How lucky and grateful am I. Life is what you
make it and what you put into it. Be positive
and never give up, believe in yourself and
make miracles happen.
e up,
Be positive and never giv
ke
ma
and
lf
believe in yourse
.
pen
hap
miracles
Love, laugh and enjoy life. Life is a magical
journey – surround yourself with family and
friends and you will always have unconditional
support and love.
To anybody with cancer, I say “you have
been hurt and nothing and no one can
hurt you any more …
SO GO FOR IT …
Be strong and enjoy life to the full.
While living with Mesothelioma, I have
travelled overseas to England, France, Italy,
Bali, Thailand and many trips within Australia.
My motto - to enjoy my family and life as
much as possible.
Inspiration... myself! And all the beautiful
people around me. And many, many thanks
to Doctor Ruth Cilento – you are my saviour.
all
Inspiration... myself! And
me.
und
aro
ple
peo
ul
the beautif
53
Cornelius
Cornelius, 69 • Randwick,
uary 2008
NSW • Diagnosed in Jan
I was born in 1941 and am a non-smoker.
My lifestyle is pretty simple and my wife, Mary
takes very good care of me making sure I
have a healthy diet. Apart from my clerical
work with the NSW State Government my
passion is teaching martial arts and health
exercises and I have been involved in this
since 1962. My wife has always been very
supportive of my activities and I am very
thankful for her support and patience.
I contracted viral pneumonia in August 2005
and was admitted to the Prince of Wales
Hospital, Sydney emergency ward, treated
and discharged. Less than a year later I
had surgery to correct an enlarged prostate
which was non-malignant. At the beginning
of January 2008 I had a persistent cough
which wouldn’t go away after two courses
of antibiotics. I consulted another GP who
suggested having a chest x-ray before
prescribing medication. The x-ray showed
a shadow on the lower part of the left lung
and following a CT scan and biopsy it was
confirmed there was a malignant tumour in
the left lung and had spread to other parts
of the lungs.
On being told of my condition my wife broke
down and I was in shock and disbelief that
I had non-small cell lung cancer stage 4.
My wife was devastated and I was worried
whether she would cope with my illness.
At this critical time she stood strong and
travelled the journey with me through my
ups and downs during my treatment. It was
due to her dedication and loving care and
steadfastness that I have managed to survive
up to this moment in time. My siblings,
54
For a more detailed, filmed
interview with Cornelius
visit www.kjlcn.org.au
relatives and friends were also informed and
all of them were shocked and sympathised
at my illness.
ication,
It was due to my wife’s ded
ness
ast
adf
loving care and ste
vive
sur
to
that I have managed
e.
tim
in
up to this moment
My journey started with seeing my oncologist
to discuss my treatment. I was very reluctant
to undergo chemo as three of my friends with
stage 4 lung cancer passed away less than
three months after starting chemo. I was told
that without chemo my life expectancy would
be around six months but with chemo treatment
it could be from eight months to a year.
My chemo treatment started in February
2008 and during the treatment I was mentally
distressed and physically exhausted. At times
I considered stopping chemo altogether as
I lost the desire to carry on living. My wife
had to push me to attend the treatment and
it was physically and mentally exhausting for
her. I was very fortunate that she remained
strong as a rock throughout my trials and
tribulations. I am not ashamed to say that I
have frequently considered ending my life.
The chemo treatment had to be put on hold as
I had to spend a few weeks in the cardiology
ward for surgery to drain the accumulation of
fluid surrounding the heart. During my recovery
from surgery I was visited by a priest and after
confession given the last sacrament. Following
that I was seen by three different psychiatrists
who made me feel upset and distressed.
On the resumption of my chemo, due to my
poor frame of mind, my oncologist detained
me in the cancer ward for observation and
put on a twenty four hour nurse to monitor
me. During my stay in the cancer ward, I
experienced severe depression. I had daily
visits from psychiatrists asking how I felt and
my reply was always that I am not happy with
my situation.
As medication and the constant visits from
psychiatrists did not change my frame of
mind, I had to undergo a brain scan and
was told that unless my mind was more
positive I would have to undergo electric
shock treatment and be transferred to the
psychiatric ward. My oncologist and the
staff of the oncology department were very
supportive and thanks to them I was not
moved to the psychiatric ward. At this stage
I decided to be in a more positive state
of mind to avoid being committed to the
psychiatric ward. On the next visit, when
asked how I felt, I told the psychiatrist I felt
happy and was looking forward to doing
the things I like, such as lawn bowls, tenpin
bowling and other activities.
rs every
...I spend two to three hou
breathing
day doing meditation and
lungs
exercises to strengthen my
d.
and my mental state of min
The psychiatrist was doubtful at my sudden
change in attitude but allowed me a few
hours out of the ward. After a while, I was
allowed a few days and then a few weeks
and eventually I was told I need not see the
psychiatrist unless my mental condition had
become negative again. After my mind had
been sorted out, my chemo treatment was to
resume. My oncologist decided that further
chemo treatment was not suitable for me
and prescribed a drug in tablet form which
helped to stop the growth of the cancer.
Since then, I feel very positive and spend two
to three hours every day doing meditation
and breathing exercises to strengthen my
lungs and my mental state of mind.
Apart from constant side effects to various
part of my body which at times are quite
unpleasant, my life is very active and enjoyable.
My wife/soul mate and I recently went on a
two week cruise of the Baltic countries with
three other couples from Australia and we had
a great time. We also engage in short trips of
a week’s duration with friends to see more of
Australia.
.
...with help and support..
and
h
I have found the strengt
ss.
courage to fight this illne
My attitude is to live life from day to day with
optimism as no one knows what tomorrow
brings. In my opinion, no one deserves cancer
in any kind or form. I always thought I would
be strong when faced with a terminal illness
but being confronted with the illness I found
myself weak and lacking in courage to fight it.
But with the help and support of my wife/soul
mate, my oncologist and supporting staff, and
my siblings, relatives and friends, I have found
the strength and courage to fight this illness.
From my frequent visits to the oncology
department I can see that they are
understaffed and an increase in staff will
help lighten the heavy load they presently
experience. My attitude after having gone
through this experience - which is still
ongoing - is that the reality of my illness will
not disappear no matter how I feel and I must
accept the seriousness of my illness and
carry on living to the best of my ability in a
positive frame of mind from day to day.
In closing, I must mention my heartfelt thanks
to my wife, my oncologist and supporting staff
for their care and constant support during my
most troubled times. I also wish to express
my thanks and appreciation to my siblings/
relatives/friends for their moral support during
my illness.
55
Elizabeth
My name is Elizabeth. I have been married to
Barry for 53 years. We have a son Greg and
his partner Bella.
Cancer has a very bad image, especially when
it concerns you or your loved ones. “Cancer
is just a word, not a sentence.” Although a
cliché, it’s one well worth noting. There is life
after that first frightening diagnosis; a life to be
valued and enjoyed every precious day.
a
“Cancer is just a word, not
hé,
clic
a
gh
sentence.” Althou
it’s one worth noting.
The five-year anniversary is always reason for
celebration in cancer patients. How about two
lots of five - ten years and still going. That’s me!
I was first diagnosed with cancer in my right
lung in June 1999. A non-smoker, except for
a short light flirtation with the habit thirty years
before, I had been exposed to regular passive
smoking in the months prior to the diagnosis.
I normally enjoyed a healthy active lifestyle,
played social tennis, travelled, gardened and
continued to work as a long-term casual relief
teacher. In 1982, after using a chlorine-based
tile cleaner in a confined shower recess, I
suffered a severe reaction. Over the following
months I had repeated respiratory infections
and two bouts of pneumonia. I was left with
a persistent chronic cough.
On the Queen’s Birthday weekend in June
1999, following a strong coughing spasm I felt
a severe stabbing pain in my right rib cage.
The pain persisted. An x-ray showed a small
56
9
W • Diagnosed in June 199
Elizabeth, 77 • Berry, NS
lesion on my right lung and a biopsy proved
the lesion to be malignant. A bone scan a
few weeks later also showed evidence of two
recently healed rib fractures in my right side.
How lucky was I? Without the Queen’s Birthday
weekend coughing bout that cracked my ribs
the cancer might not have been discovered
until it was too far advanced for treatment.
Lung cancer often doesn’t show symptoms in
its earlier stages.
Scans also showed I had plaques on my left
lung that could be attributed to exposure to
asbestos. In the early 60s we had asbestos
insulation sprayed onto the metal ceiling of a
sunroom. Parts of the material failed to adhere
at first and the workmen returned a couple of
times to fix it. I was close by while the work
was carried out. Fortunately the plaques
condition has remained stable over the past
ten years. My doctors thought my cancer had
developed fairly recently (18 months?) but
couldn’t give an opinion of why it had.
It was proposed that I undergo immediate
surgery for removal of the upper lobe of the
right lung. In early July I had the operation.
Things had happened so fast I didn’t have
time to think too much about what might
eventuate. We were all very optimistic about
the outcome. The pathology showed the
cancer to be contained within the removed
lobe. It hadn’t spread to the lymph nodes.
No further treatment such as Radiotherapy
or Chemotherapy was recommended. The
twice-yearly reviews were positive. After five
years I was given the all-clear.
For some months during 2004 I had been
experiencing twinges of pain in my right hip,
which were becoming worse. I put it down
to a water-skiing injury about thirty-five years
before. In August 2004, x-rays showed nothing
apart from some minor degeneration in the
lower spine attributed to ageing. Over the
next six months I tried chiropractic treatment
and extensive physiotherapy. There was no
improvement. I was fast becoming worse and
by February 2005 I could only walk with the
aid of a stick.
The physiotherapist referred me back to
my GP who referred me to an orthopaedic
surgeon. He ordered an immediate MRI (for
that day). He stayed back late (till 6.00 pm)
to get the result, then came to the radiology
department to escort me back to his rooms.
I knew something was ‘fishy’ when he offered
me a wheel chair! Secondary cancer had
lodged in the right pelvis. Neither Barry nor
I had expected that. We were stunned this
time. I had been so well in the five years
following the surgery.
I think I handled the news better than Barry!
We were frankly but gently told the diagnosis;
that he was referring me for CT and bone
scans, with other tests at the Mater Hospital,
Sydney for the following day. “If you can’t
get an immediate appointment get them to
contact me!” I got the appointment for the
next morning. When I enquired as to whether
my doctor had been in touch I was told,
“Someone rang up this morning and made a
bit of a fuss”. That doctor was wonderful!
Once again things happened quickly. That
next day, and those following I had tests,
biopsies, scans etc. I was then referred to the
radiologist. Her prognosis was not optimistic
in the long term but she recommended a
two-week daily course of radiotherapy that
she believed would get me walking again.
For that I got a tattoo! My first and last; a
small dot on my back in the pelvic region so
the radiotherapy would “shoot straight”. I
was lucky that I suffered no radiation burns.
I experienced some nausea in the second
week. For that I was prescribed a pill that
stops the various drugs and other treatments
from fighting each other to cause the nausea.
By mid March, with my walking improving,
my doctor felt her work was finished for the
time being. She referred me to my medical
oncologist who I have seen for the past four
and half years.
nce my
By just a happy circumsta
g trial
dru
new
oncologist knew of a
y.
rap
the
cer
using a daily oral can
By just a happy circumstance my oncologist
knew of a new drug trial using a daily oral
cancer therapy. She rang then and there and
was told I might be accepted for the trial. I
would receive the actual drug. It was not a
double-blind trial as is often the case where
some patients get a placebo and others the
drug. I wouldn’t have been in that. My doctor
said, “Go home, talk it over with your family
and think about it before you decide because
there will be some side effects, some of
which are still unknown”. Think it over? We
didn’t need to do that. Barry and I looked at
one another, nodded, and immediately said
I’d be in it. The original prognosis had not
been good back in February so we felt there
was little to lose.
The next few weeks were taken up with
establishing the routine for taking the drug
and the other protocols connected with my
treatment for which I needed to be in Sydney
regularly. By early April I received my first
month’s prescription plus an infusion of a
specific treatment, which protects the bone
structure. The oral cancer therapy, a small
white tablet which is a little smaller than a
headache tablet, is taken daily two hours after
food or one hour before food. In over four
years I have never missed taking it. Wake up,
take the tablet with its 200 ml of water, then
wait at least an hour before breakfast.
The bone treatment takes about fifteen
57
minutes to be administered intravenously
in the chemotherapy department of Royal
North Shore Hospital, Sydney. On the rare
occasions when I feel down or sorry for
myself I think of those I have seen in the
radiology and chemotherapy departments of
the Mater and Royal North Shore hospitals
and count my blessings. There are many
who appear to be in a much worse state
than I, some quite young.
My treatments and consultations take place
at Royal North Shore and North Shore Private
hospitals. At first I had monthly CT, bone
scans, blood tests, bone treatment infusions
and appointments with my doctor. Because
I have responded so well to the oral cancer
therapy, over time those appointments have
now been reduced to every three months.
CT and Bone Scans are now twice a year
and once a year respectively. In August 2008
the drug trial ended and it was placed on the
Pharmaceutical Benefits Scheme.
The oral cancer therapy (which I have now
been taking for more than four years) does
have side effects, particularly affecting the
hair, skin and nails. My nails split, crack and
break easily; my skin is often dry and scaly.
My hair has thinned to some extent; is dry
and “fuzzy” like fine steel wool, grows very
slowly and breaks off (haircuts twice a year).
I still laugh at my doctor’s rejoinder one day
when I was having a slight whinge about my
‘bad hair perm’. “Don’t worry about it, some
people pay good money to get hair like that.”
It was just the right response.
Everything is manageable and a small price
to pay for the benefits I enjoy. My friends and
family have been wonderful. I’ve had offers
to be driven to Sydney to save me the three
hour train journey, phone calls, prepared
dinners, cakes and other goodies etc. I can’t
repay them but try to show my appreciation
in other ways.
I’ve known only one person with lung cancer.
58
She was a friend and colleague who did not
smoke when I knew her and was diagnosed
about the same time as I was in 1999. She
died within three months.
I haven’t experienced any adverse reactions
to the fact that I have lung cancer from
anyone. Very few of my friends or those I
come in contact with smoke. My family and
friends were immediately caring, supportive
and encouraging and have remained so.
I‘ve had to resign myself to the fact that I am
now a “pill popper” – I need to take other
prescription drugs to maintain my comfort but
I always let my doctors know if I am taking
other non-prescribed drugs and/or vitamin
supplements. My doctor has supervised my
care and treatment very diligently and with
great compassion. Whenever a question
has come up about my condition she has
referred me on to an appropriate specialist. I
have received prompt attention and excellent
treatment. The wonderful care and attention
from the many doctors, nurses and other
medical professionals I have seen over
the past ten years is commendable. Their
compassion and professionalism, good looks,
glamour, and sense of humour have all helped
me to cope. They’ve been forthcoming with
information and readily answered any queries
I’ve put to them. I claim there aren’t many
parts of my body, either inside or out, that
haven’t been checked out, including my brain!
attention
The wonderful care and
ses
from the many doctors, nur
nals
sio
and other medical profes
ten
t
I have seen over the pas
years is commendable.
I haven’t felt the need to seek out any type of
support group connected with the disease.
I know it’s available should I feel the need.
Our social life has not changed all that much
although I do space the odd late night or
busy day so that I don’t become over-tired.
Everyone is always very considerate and I’m
never made to feel I’m a ‘party-pooper’ if we
leave early. I’ve tried to maintain a positive
outlook on life and believe it is important to
value and make the most of every day.
sitive
I’ve tried to maintain a po
e
iev
bel
and
life
outlook on
and
ue
val
to
ant
it is import
.
make the most of every day
I have a philosophy I’d like to share:
1. Every day’s a good day but some days
are even better.
2. When you first look in the mirror each
morning ignore the wrinkles and other
blemishes just say to yourself “Hello,
you’re still here, have a happy day”.
3. When people ask, “How are you?”
always reply positively and with a smile,
“I’m fine” or “I’m still hanging in”. They’ll
usually respond with a compliment
of some sort which bucks you up.
Don’t depress them with the details or
maybe next time they might not bother
to enquire. It pays to remember that
others have their own troubles.
4. It’s a privilege to have another birthday
and get older so NEVER complain about
it. Not everybody gets the chance.
5. Try not to feel you’re dying. We all are
when you think about. Life is for living.
Make the most of it, every day!
6. Everyone needs someone to love,
something to do and something to
look forward to. We’ve followed that
to some extreme.
Not wanting to move from our beautiful
mountain with its magnificent views, pleasant
climate, lovely fertile soil and close circle
of friends we, as a family, decided to build
a new home as owner-builders before
the old one fell down around our ears. By
employing tradesmen and other labour only
when necessary and with much help and
support from Greg and Bella who work all
week in their own Sydney business and
then come down to help at weekends, work
has progressed well. Quite a challenge
for two oldies; Barry is remarkably fit and
enthusiastic. He has his 80th birthday in
December 2009! I act as catering officer,
occasional painter and “gopher-girl” (go for
everything). We hope to move in by early
2010. We certainly have had something to
do and something to look forward to!
I try to remain positive, active and busy. I do
get tired easily and don’t have the strength,
stamina or staying power I once had. When I
mentioned that to one doctor she was brave
enough to venture that I’m not getting any
younger. “Wash out your mouth” I admonished.
We both laughed.
We have a large garden that we love although
it has suffered recent neglect because of the
building project. We play lawn bowls and are
members of a local group who meet once
monthly for drinks and good company. We
are never at a loss for something to do or
somewhere to go.
o
For those of the public wh
of
nty
ple
is
re
the
w,
want to kno
and on
information in the media
forms
ny
ma
the
ut
abo
the web
cer.
can
g
lun
ing
lud
inc
,
of cancer
For those of the public who want to know,
there is plenty of information in the media
and on the web about the many forms of
cancer, including lung cancer. Non-smokers
as well as smokers can be afflicted with the
disease. Pollution, chemical residues, the use
of tobacco and its derivatives, environmental
and lifestyle factors all contribute to the
disease. There is still much to learn about its
causes and treatment but that is improving
as time goes by.
Life is good.
59
Dr Pavlakis
of Medical Oncology
Dr Nick Pavlakis • Head
tal, Sydney
Royal North Shore Hospi
As a medical oncologist who specialises in
lung cancer I have seen a broad range of
patients over the years, and have therefore
also witnessed a spectrum of journeys.
By the time people reach me, their diagnosis
has been made and my role is to discuss
the best treatment plan. The first meeting
involves understanding the individual situation,
for example details about the person (health
history, ethnic background), what type of tissue
is involved, and what stage the disease is at.
Based on this, I then try to offer as broad a
list of options as possible. I firmly believe in
offering patients all the possible options for
treatment, whatever stage they are at.
It is natural, when first diagnosed, for people
to want to know their outcome. Is it curable
or not? However it is important to realise
that each person is different. I have been
surprised many, many times over the years.
What is important is that I am able to assist
in offering a level of hope. I encourage my
patients to look at the positive aspects of
their diagnosis. It’s not possible to change
the facts, but you need to make the most of
it. Even the most challenging situations can
be offered hope.
Many patients have had an impact on me
over the years. I have learnt from each. In
particular the importance of being open and
honest with family members. When you try to
protect someone it can create a lot of angst
and tension. I have seen family members
struggle with grief and anger on losing their
loved one, when they realise how much
they hadn’t shared with them. I am often
asked about whether children should be told
and involved, and again from watching my
60
patients I believe that the truth is always the
best, it is how it is worded which is important.
Other questions I am asked involve travel. Can
a patient go overseas? I definitely encourage
this as it’s important to set goals - travelling,
reaching a personal milestone such as a
birthday or new grandchild. I like a challenge
and patients making me work hard to meet
their personal goals.
My hope for the future of lung cancer care is
a loss of community negativity. I hope that we
can move beyond the stigma associated with
the disease. Survival has improved and lung
cancer treatment will become more and more
personalised. We will also see more specialist
lung cancer doctors. We need to get the
message out there that a simple chest x-ray
is not a lot to do or ask for. If someone has a
cough that’s not going away, seek advice. If it
doesn’t feel right, pursue it. And if an individual
is not happy, at any stage, seek help elsewhere.
There is a definite need for research funds. We
are seeing an increased rate of lung cancer –
concerningly in non-smoking, younger women.
Lung cancer struggles for resources. Lung
cancer nurses should be mandatory. The needs
of people with lung cancer are far greater than
many other cancers as people are often shifted
between different areas of care, and can end
up meandering through a complex system. The
psychological support that can also be offered
by a specialist lung cancer nurse cannot be
underestimated.
The will to live, the human spirit is pretty
amazing. No matter what I do I’m only a
small part in a patient’s journey. I have seen
enough people beat the odds to not be
surprised anymore.
Mary
Nurse Coordinator
Mary Duffy • Lung Cancer
tre, VIC
Cen
cer
Can
llum
cCa
Peter Ma
I have worked in lung cancer care for eighteen
years and have been in the role of lung nurse
coordinator for the past seven years.
Lung cancer treatment can be very complex,
with patients seeing a variety of health
professionals in a short period of time. The
Lung Cancer Nurse Coordinator (NC) is the
single point of contact for patients through
their entire cancer journey regardless of the
stage of their cancer or treatment type they
are receiving. The NC is the familiar face
and voice for patients and their families as
a resource to provide support, information,
and help guide them through the maze or
complexities of the healthcare systems.
role of
People have described the
‘polyfill’
a lung cancer nurse as the
ether.
that holds everything tog
The lung cancer nurse can be found wherever
the patient is, and whatever point they are
at – from diagnostics and staging, active
treatment, follow up, through to end of life.
From woe to go if you like.
People have described the role of a lung
cancer nurse as the ‘polyfill’ that holds
everything together – the lynchpin that is
pivotal to continuity of care.
When first meeting a patient the initial step
is to understand and meet the individual
needs of that person. This includes providing
access to experts such as a dietitian, social
worker, and psychological support. I don’t
attend doctor/patient consultations but see
each patient separately following their medical
consultation. Some people want a lot of
information, others want the bare minimum.
The important thing is that the patient feels
they are part of a team who are working to
support them with individualised, tailored
care. It allows the team to meet the needs of
the patient at whatever stage they’re at and
wherever they are.
some
Lung cancer patients are
ngs
bei
an
of the bravest hum
h.
wit
d
rke
I’ve ever wo
Lung cancer patients are some of the bravest
human beings I’ve ever worked with. They
frequently face bad news or a poor prognosis
right from the very beginning. The different
ways people deal with it is inspiring. Lung
cancer patients have more distress than any
other group of cancer patients. Many have a
short period of time to deal with things and
are confronted with changing news all the
time. Sadly there is still the public stigma
associated with lung cancer to deal with too.
Coming to the Peter MacCallum Cancer Centre
for the first time can also be very confronting as
it is a cancer centre. For many this isn’t the first
crisis in their lives, and they don’t look for pity –
they want empathy, compassion, honesty and
to be treated as an equal. In my experience,
I find that patients trust you implicitly and will
share with you their deepest thoughts. Many
are humbled that you’re interested in who they
are and extremely dignified in their journeys.
61
My goal is to make sure we can work through
things together. I don’t actively advocate for
people, but facilitate them advocating for
themselves. I am able to act as a sounding
board for possible questions they may like
to ask their treatment team.
On bad work days, patients will always remind
you of why you do it. One person who had a
particular impact on me was a young man,
Matt Pusey, a fit and healthy 30 year old who
was diagnosed with an unusual form of lung
cancer. He was very frightened but incredibly
brave and strong. He wanted to live life to the
full, and he did.
Travelling was very important to Matthew and
his aim was to put his cancer and cancer
treatment into schedules between his travels.
By sharing this goal with the treatment team we
were able to facilitate that to happen. It wasn’t
necessary to make a choice between cancer
treatments and travelling – both were possible.
He reached out and touched the lives of
many people at Peter Mac through his warm,
generous and entertaining personality. He
dedicated considerable time and effort to
promote the hidden needs and face of lung
cancer, and left no stone unturned in seeking
options for his own treatment. Matthew was
always very generous with his availability and
time to attend media events and speak as
a lung cancer patient on advocacy. He also
pioneered the notion of a lung cancer patient
getting accepted onto a lung transplant list in
Australia. He was active on lung cancer forums
and gave considerable comfort to many.
Matt was one of the many people I have
worked with who has reminded me of just
how important life and living is.
I would encourage anyone faced with a lung
cancer diagnosis not to let the cancer take over
their life. Put it into a ‘corridor’ in your life and
keep it there. It’s hard to do, but important in
order to maintain a level of normality in your life.
62
There’s no recipe for the best way to manage
a diagnosis of lung cancer. No one size fits all
but you can get it tailor made to fit. There is
always something we can do or help with if
we know about it.
I would like to remind people that there is no
such thing as a silly question. Feel free to ask
as many questions as you need to from any
member of the team. It might not be directly
about your cancer, but about how you’re
feeling, practical areas like employment or
anything else that is important to you. While
there are two things we don’t have - and they
are a magic wand or crystal ball - patients
have the right to expect us to be open and
honest with them. And we will.
re all lung
My wish is that in the futu
access to a
cancer patients will have
se...
specialist lung cancer nur
It’s important to know that no-one ever has
to make their lung cancer journey alone. If
they have access to a phone, ring a cancer
nurse in any of the cancer councils nationally
and talk to a professional. My wish is that in
the future all lung cancer patients will have
access to a specialist lung cancer nurse –
something that is in desperately short supply.
In Australia the majority of patients will never
have access to this vital support.
Lung cancer gets a minimal amount of
healthcare funding. We need more research
undertaken, not just on treatment and cures,
but also on supportive care, managing life,
and raising awareness within the community
at large.
Over the years, I have seen patients from all
walks of life. I have heard many great stories.
We have also laughed together, and celebrated
responses to treatment, symptom relief, and so
on. What I would like to say to all those reading
this story is try not to focus on the ‘can’t’ but
focus on the ‘can’. Keep living and keep doing.
Rosemary
Information Group
Lung Cancer Support and
As a lung cancer patient, when you heard the
words “support group” you may have reacted
angrily… “I am strong, not weak! Support?!”
After all, you are feeling well but the doctor has
given you shocking news that is unbelievable.
You want to fight this devastating diagnosis.
Did you imagine a support group as a collection
of defeated people, who have nothing to be
cheerful about? Perhaps with oxygen tanks and
in need of someone to lean on both physically
and mentally?
tal, Wahroonga NSW
• Sydney Adventist Hospi
another to
They are empowering one
disease.
air
live fully and fight this unf
Try replacing that image with this: In a tastefully
furnished room, between ten and twenty people
who look well and are functioning normally,
greet one another with smiles and laughter.
They make cups of tea and other drinks and sit
around in a group enjoying a biscuit or some
homemade fare that someone has produced.
63
They are empowering one another to live fully
and fight this unfair disease.
Why do people participate in our Information
and Support Group?
Meeting others in the same boat and
finding that you are not alone
Information about your cancer treatment,
side effects and coping strategies
Relaxing with people who understand
your feelings and fears, because they
are going through the same experience
Learning about other lifestyle changes,
diet, nutrition, relaxation, meditation,
acupuncture, Qigong
Learning how others have coped with the
challenges that you might be about to face
Sharing with health professionals, including
oncologists, in the safe environment of the
group
As a group facilitator, it is important to
acknowledge privacy, so everyone can
share in a non-threatening, non-judgemental
atmosphere, where trust is quickly established.
Everyone can share in a
gemental
non-threatening, non-jud
trust
ere
atmosphere, wh
ish
is quickly establ ed.
Where else can you share these feelings and
fears of lung cancer, from a patient or a carer’s
perspective, than with fellow travellers who
can really understand?
Carers spend part of the group time meeting
separately from patients. Both groups value
this time to share particular needs and issues.
It provides an opportunity to discuss practical
or emotional issues related to dying and death,
something which, at the right time, is helpful
to share.
64
Yes, there are times when we are upset
because a group member dies. A little piece
of our heart breaks, but our life is richer and
stronger, from the inspiration we received as
we shared their lung cancer journey.
It is now five years since I started this group,
open to anyone from anywhere who could
get to Sydney Adventist Hospital, in Sydney.
Telephone connections have also become
established for those further away.
e
Telephone connections hav
for
also become established
ay.
aw
r
the
fur
se
tho
Yes, there are survivors, who joined the group
at its commencement. There are survivors who
are back living their usual lives! Many have not
survived; late diagnosis of lung cancer provides
a challenge.
Everyone who comes to the group finds hope.
This hope is able to empower patients to take
control of their lives again. By learning and
sharing with group members, it is possible to
find real and sustainable peace of mind, which
is independent of other circumstances.
As one group member said, “This is like a
train journey. Belonging to this group is like
travelling First Class. We don’t know how
long the journey will be, but it sure makes
it a whole lot more comfortable when we
travel First Class!”
It is truly a privilege to be the facilitator of
such a strong and inspirational group of
people who share there most vulnerable
moments with me.
the
It is truly a privilege to be
and
ng
stro
a
h
suc
facilitator of
.
ple
peo
of
up
gro
inspirational
Australian websites
The Australian Lung Foundation
www.lungfoundation.com.au
Kylie Johnston Lung Cancer Network
www.kjlcn.org.au
To access the Lungevity patient forum
click on ‘online forum’ at the above
address. New users will need to register
and existing users will need to log in.
Cancer Council
www.cancer.org.au
Local cancer councils can be
accessed via this site.
Cancer Connections
www.cancerconnections.com.au
An online community that links people
with cancer, their carers and families.
Cancer Voices Australia
www.cancervoicesaustralia.org.au
International websites
Cancerbackup
www.cancerbackup.org.uk
Roy Castle
www.roycastle.org
Mesothelioma UK
www.mesothelioma.uk.com
Grace
www.cancergrace.org
www.cancergrace.org/lung/
Lungevity Foundation (USA)
www.lungevity.org
Support Services
The Australian Lung Foundation
1800 654 301
Cancer Council Helpline 13 11 20
Sydney Adventist Hospital (NSW)
Cancer Support Centre
02 9487 9061 or 02 9487 9062
Peter MacCallum Cancer Centre (VIC)
Cancer Information and Support Centre
03 9656 3754
Brisbane Lung Cancer Support Group
1800 654 301
CanTeen
1800 226 833
The Relaxation Centre
15 South Pine Rd, Alderley QLD 4051
07 3856 3733
www.relaxationcentreqld.com.au
The Gawler Foundation
55 Rayner Court,
Yarra Junction, Melbourne VIC
03 59671730
www.gawler.org
Perth Meditation Centre
08 9381 4877
www.perthmeditationcentre.com.au
Working Carers Support Gateway
www.workingcarers.org.au
A website to help people who are
juggling working and caring roles.
Dr. Chen
787 Victoria Rd, Ryde NSW 2112
02 9807 8688
www.chineseherbal.com.au
Asbestos Support & Advocacy Groups
NSW Asbestos Diseases Society of Australia
Free call 1800 006 196 | www.adfa.org.au
QLD Queensland Asbestos Related
Disease Support Society
07 3834 6647 | www.asbestos-disease.com.au
VIC Gippsland Asbestos Related
Diseases Support Group (GARDS)
03 5127 7744 | www.gards.org
SA South Australian Asbestos
Victims Association (AVA)
08 8212 6008 | Toll free 1800 665 395
www.avasa.asn.au
65
www.kjlcn.org.au
The publication of Lungevity Stories 2009 has been made possible
through an unconditional educational grant from Roche Products.