Louise Williams Story|
Louise's story starts
back with her father Norman.
Louise Williams saw the devastating effects of mesothelioma
she watched her father die from the disease in 1985.
Norman Geoffrey Heritage was born 6/1/1932
and died aged 54 yrs
on the 11/9/1985
of pleural mesothelioma.
He was the youngest of eight children.
Norman Heritage married Mildred Waters
on the 14th June 1954
John's Presbyterian Church,
Buckley St, Essendon. Melbourne,
Mildred's brother Reynold
(Lou's uncle) married them.
Reynold, Grandmother, Mildred and Norman.
They had four children
Louise being the
He was a great dad, husband and
loved helping everyone else
1981. Dad on his 50th birthday
Norman worked in the plastering trade
where he had been exposed
Little did he know that years later
he was going to diagnosed
with pleural mesothelioma.
20th Wedding Anniversary
At first it was miners and tradesmen
who fell victim to
Now the toxic product is stalking people at home.
Every evening in the 70's and 80's,
dads and husbands returned
from work and did what dads and husbands
they gave their wives and children
a hug and a kiss.
As they did, a cloud of dust
from their overalls
Cheap, strong, waterproof and
it was in building products everywhere.
No one realised its
50 to 200 times thinner than a human hair,
were working their way into people's lungs,
where they lay dormant for many years
before developing into the
lung cancer, mesothelioma.
An early asbestos exposure for
Lou Williams, could have been
from her dad Norm's hugs
from washing his overalls, vacuuming his car,
sweeping up the dust
after home renovations.
A plasterer who worked on stores
Norm was diagnosed with mesothelioma in 1985.
A visit to Queensland visiting us.
Dad was ill, and had just been misdiagnosed
hernia in January 1985.
Sitting with mum and their two little
grand-daughters Jo and Deb
(my beautiful little daughters).
He died six months later, aged 54.
Williams, however, never
she was susceptible,
too, and when doctors gave her
the diagnosis in 2003,
she went into shock.
I asked, "What's going to happen to me?"
and he replied,
"I think you should
go home right away
and get your life in order.
You've probably got a couple of months."
The mother-of-two said
her daughters, husband and the
rest of her family
Then she endured surgery and
eighteen sessions of chemotherapy.
"I was very ill.
I thought I'd die," she says quietly.
Despite enduring more chemo and surgery since,
miraculously still alive.
Every mesothelioma funeral she attends
and there have been fifty
in the past nine years
reminds her of that.
Most people diagnosed with mesothelioma
have a life expectancy of a few months
to a couple of years.
"I can't explain why I'm still here," she says.
She's pragmatic about the fact that it
will claim her life;
she doesn't plan more than four weeks ahead
moments she never expected to see,
such as the births of four grandchildren
and her 55th birthday
("I had lived one year longer than Dad").
A new little grandchild is due in August 2013.
According to the Asbestos Management
Review Report released in August,
there have been 4700 deaths
mesothelioma in Australia since
records began in the
It's estimated 25,000 more will die
over the next 40 years.
But as Asbestoswise
(an information, support and awareness
points out, considering
almost everyone has been
to some asbestos fibres,
these figures are mercifully small.
More than 2500 people are
with asbestos-related diseases
in Australia every
These include mesothelioma,
lung cancer, asbestosis
condition that restricts breathing
by hardening and scarring the
and pleural plaques
(thickened patches on the chest and lung lining).
Lou was a founding member of
the original Victorian support group
when first diagnosed,
and has served on asbestos
organisation committees including
a stint as vice president.
She now works tiredlessly with
the Bernie Banton Foundation
on a global scale raising awareness,
advocacy and support.
Now such groups field constant calls,
Facebook groups link
solicitors specialise in
and in September,
the government announced the creation
Office of Asbestos Safety.
This new body aims to improve awareness,
management and safe
asbestos in homes, offices and schools.
It is not before time.
One in three Aussie homes is
to contain asbestos and,
as you read this,
young couples all over
the country will be knocking down walls,
unaware they're playing 'renovation roulette'.
In the past,
victims were mainly miners
Now, DIY enthusiasts are swelling
a horrifying third wave.
A NSW study revealed 60.5 per cent
of renovators reported they'd
exposed to asbestos,
while a study published in the
Medical Journal of Australia
found 35.7 per cent of female
mesothelioma cases were attributable
to home renovation.
Louise's Diagnosis and Treatments
1985 to 1992
in Queensland, Australia I
continual slightly dull headaches
nothing really major just nagging
living in Brussels,
Visits to neurologist, head
all results came back
in Christchurch, New Zealand
I experienced 2
days of intense migraines.
A visit to the
local doctor where
my blood pressure was
through the roof/sky high!
He called an
rushed me to hospital.
Following various tests
again inconclusive results.
put on high blood pressure tablets,
helped to alleviate the
medical team could not
exactly what had caused all of my
and said it was better
to leave sleeping
1994 to 2003
Extreme chronic unexplained fatigue.
Visits to specialists/many blood tests
all inconclusive and simply diagnosed
with the term chronic fatigue.
While living on the Gold Coast,
Queensland, Australia from 1996 to 2001
I was working full time,
then eventually down to part time work
where I would have to have a lie down on a bench
during my lunch break due to unexplained fatigue.
My iron levels etc were fine.
My breathing at times would be quite shallow.
2001 to 2003
Living in Launceston, Tasmania, Australia
where we ran a successful bed & breakfast
(change of lifestyle),
I would have time for walking up and down
the hills there and along Cataract Gorge.
I would find exhaustion would settle in within
a short while walking and would have to rest.
At this time I had a pap smear done,
the pap smear result came back 'abnormal cells'.
My local doctor said
"Nothing to worry about,
we will check it out in a year".
Noticed a hard raised lump forming on the
right hand side of groin area.
While in Melbourne on holiday,
I had ultrasounds/tests done
at my mum's local doctor.
Nothing showed apart from a soft tissue lump.
I was told all okay and possibly due to injury.
In 2001 she was diagnosed with
peritoneal mesothelioma and bravely fought
that with extensive surgery and chemotherapy.
We returned to the mainland
Victoria, Australia early 2003.
I was quite fatigued still,
appeared to flatten into the
looked slightly raised but nothing serious
must be my imagination!
My breathing appeared shallow though
nothing to worry about
One night I
experienced the worst pain
imaginable coming from my spine
to this 'groin area'.
By the morning it has gone.
I went to see
the doctor who I had
seen about this problem in 2001. Her comment
'oh Louise, it hasn't gone away yet?'.
I asked her to refer me
to a specialist.
The specialist asked me why no one had ever
ordered a fine needle biopsy to the raised groin area!
this on the Monday.
On the Thursday night at 8pm, while home
own he rang me.
'Louise, there are tumour type cells there,
need you to come in to my surgery
in the morning and I will mark it
ready for surgery'.
I said to him 'What does this mean?'
response - 'Its malignant cancer, possibly ovarian!'.
tests done, waiting for hospital appointment.
Hospital operation overnight.
up and was told 'Not ovarian cancer,
it is a mystery, will know
lab results in a couple of days'.
Operation involved taking as many
that the surgeon could get at in the linings
abdomen and diaphragm,
plus heaps of flushing with a chemotherapy
The groin one was size of a golf ball and was still growing.
Visit 2 days later, Keith and myself
went back to see the
Mr Robert Pucius confirmed that is was a
He looked at me with tears in his eyes
'Louise, I am very sorry to have to
tell you this news,
it is me mee
soo th th ...'!
I looked at him, he was having trouble
I said to him 'Its not mesothelioma'!
He said 'Oh you
know about that cancer.'
I said 'Yes, asbestos cancer, my dad died
of pleural mesothelioma in 1985'.
His response was 'Oh I am so
I'd advise to go home and get your affairs into order.
refer you to an oncologist,
there are two that I would recommend
I asked him how long I had to live.
He said 'not long, this
is an aggressive cancer
and your tumours are showing to be very
Possibly a couple of months to a few months
on treatment and how you respond'.
We went home, fell into a heap on the bed
cuddling each other and basically
very numb and like our life was falling apart.
I could have handled any other cancer,
however not MESOTHELIOMA.
My dad had worked with asbestos products
I hadn't done this!
We stayed huddled on the bed for what
seemed like a few hours,
Keith would say to me 'you have to ring
your kids as they will be worried sick'.
My response was 'not just yet,
I can't tell them'.
A gorgeous girlfriend, Sue knocked on
our front window and called out
'Louise I know you are in there,
come on open the door,
I have your favourite muffins'!
Thank you Sue,
I'll never forget those magical words!
It brought us out of our nightmare
few hours huddled/cuddled on
the bed back into reality.
Keith said to me you have to ring the kids,
I said to please text them and I will ring later on
when I was able to breath without
it seeming like I was choking with emotions and anxiety.
My pain from the operation made me very weak
and in pain, and I remember
lying in bed one day and thinking if I just
close my eyes and not wake up
I'll be fine doing that.
Just to try and bend down and
shoe on my foot was unbearable pain.
To have a shower took all of my energy.
Next step was saying goodbye
to all family and
friends around Australia.
Lots of beautiful hugs and crying
for a few weeks until January 2004
John Strano's story and my commencing to take
control of living with mesothelioma
One night we were on the Gold Coast at a
in Robina having dinner.
This friend, Kevin said to me 'oh you
should go and visit my mate John Strano,
he has asbestos cancer and
still alive after a few years
He is living on the Gold Coast'.
the next day we rang John and
visited him at his home.
He told his
story to us.
5 years ago he was diagnosed with breathing
difficulties/a cough and coughing up
blood/pain in his chest and
went to see the doctor.
He ended up in hospital where two specialists
told him he had asbestos cancer
and was going to die.
wanted to operate,
the other doctor wanted to wait and see
pain took over then give palliative pain relief.
John had been a
deep sea diver and
it was through the equipment he used that
asbestos was where his exposure happened.
went discharged himself,
went to Burleigh Beach
dived in and swam
around to the next cove.
Coughing up blood and finding it hard to
he thought to himself if he made it
then he would heal
He made it. That was the end of 1999.
Today (2013) he
is alive and reasonably well.
Winter plays havoc with his health,
so he takes himself off to bed and
armed with many natural healing
he lies low for a few weeks.
John said to me that he
believed that a
natural diet and calming mind was very
survive any length of time
He did not believe
medical treatment helped,
in fact his feelings were it
did more harm than good.
My Chemotherapy story with
Peritoneal mesothelioma cancer.
The visit to see Allan Zimet, oncologist
was a very emotional day for Keith and
I was in turmoil after seeing John in
what should I do? keep my oncology appointment
have medical treatment or follow
John's advice and his strict health
and have no medical intervention! I decided that
brave/strong enough to just go it alone
without medical treatment,
however I would also heal my body myself
with other natural organic
keeping my mind in a positive state throughout
healing and living in the moment,
letting the universe take care of
At last the day arrived for my very first appointment
Allan Zimet, a leading
Oncologist in Melbourne, Victoria.
It was a
very emotional day for Keith and myself.
Allan looked at my scans,
asked a few questions,
ordered some more scans and blood tests and
said he would like to commence chemotherapy,
a combination of
cisplatin and gemzidabine
for 18 sessions.
I asked him if he had
surviving mesothelioma patients on his books
to which he
"yes I have 4, one died recently
that lived with meso
for 8 years.
Currently 2 who are up to the 8 years mark
and one who is
now up to 5 years."
I asked him how long he thought that I had,
comments were 'a couple of months
if treatment does not work,
couple to a few months maybe a couple
of years if treatment is
in stabilising/shrinking the tumour activity'.
patients decide not to ask these
questions up front, for me I like
to know what I am
up against from the start.
It is the 'average
statistics' not always true!
I was determined to get to 5 years and
assess my situation then.
So within a week I
commenced chemotherapy treatment.
Chemotherapy consisted of day chemo
for gemzidabine and overnight
hospital stays for cisplatin,
plus weekly changes of my 'port'
that was put in place for the chemo needles
to go into rather
to get a non-existence vein that
would continue to just collapse making
the huge chemo needles
and the procedure would be tried again
making my veins/arms very painful.
Honestly have no idea how I got
through the chemotherapy,
I remember the first few days of just
through them by following the
instructions to a tee with steroids,
anti nausea meds etc and trying not to throw up,
trying to get some sleep,
and to calm the anxiousness of my situation
as this was enhanced thanks to the steroids.
As time went on with my treatment
I lost more weight,
looked ill and couldn't
regain my strength.
Finally the chemo was over,
my port taken out and the final scan done.
Shrinkage had happened.
That magical word for meso!
So within a week I
Chemotherapy consisted of day chemo
for gemzidabine and overnight
hospital stays for cisplatin,
plus weekly changes of my 'port'
that was put in place for the
to go into rather
to get a
non-existence vein that
would continue to just collapse making
the huge chemo needles
and the procedure would be
making my veins/arms very painful.
Honestly have no idea how I got
through the chemotherapy,
remember the first few days of just
through them by
instructions to a tee with steroids,
nausea meds etc and trying not to throw up,
trying to get
and to calm the anxiousness of my situation
this was enhanced thanks to the steroids
As time went on
with my treatment
I lost more weight,
looked ill and
regain my strength.
Finally the chemo was over
port taken out and the final scan done.
Shrinkage had happened.
That magical word for meso!
My oncology visits were now down
to fortnightly in place of weekly.
Eventually two monthly visits were
the normal procedure for me unless
something presented itself then I
would give my oncologist
a quick ring
and an appointment arranged,
usually followed up with a
full CT/Pet scan, blood tests and
a visit back to
see my oncologist for results.
Then in 2009, Lou received a second blow
she had developed pleural mesothelioma.
Lou now has the distinction of having
rare and unusual case of mesothelioma
as her peritoneal mesothelioma
separate from her pleural
"outbreak/strain" of mesothelioma.
Once again, Lou and her family
faced an aggressive
therapy to battle her mesothelioma.
Through care from
very brilliant oncologist
(Allan Zimet) and cardiothoracic surgeon
Lou endured three major operations,
a three week stay in the hospital,
sessions of alimta/cisplatin
chemotherapy involving overnight
in the hospital.
Last round of chemo.
Fitzroy Garden. 2010
Keith and Louise
Enjoying our holiday in Nice,
south France very much.
Catching the Euro bus to
Antibe and Cannes tomorrow.
Slight tightening in my lung/chest
area probably just fluid escaping!
Just have to pace myself
just get on with the day.
December 1st, 2010
Saw my oncologist for results tonight
of my big scan/mesothelioma
marker blood test/CA125 and liver function tests
meso marker not back yet however all other
results still same as last time - yay!
Still cruising and doing well
according to my oncologist !!!!
February 24, 2011
A good report from my oncologist yesterday,
blood tests good.
The meso marker had not come back from the lab
however the other tests were fine!
Next visit in three months.
April 5th 2011
July 20th, 2011.
I feel guilty for getting a good report
from my oncologist last Wednesday
after a 'false alarm'!
Appears no tumour(s) in bowel
My oncologist cannot explain it other than
to say 2% of PET/CT scans show up
like this on rare occasions!
He said possibly elsewhere outside
bowel however for moment to 'leave it'
and to come back in two months
and have blood tests done.
September 21, 2011
A good report from my
oncologist this evening!
'Going well Louise,
come back in three months instead
of two months for your next visit
blood tests looking good
June 2nd, 2012
Yay! It is 2 years today since I finished my
last rounds of chemotherapy in hospital
yay! It is also our 11th wedding anniversary!
We are celebrating in Hobart tonight!
Now, it is nearly four years
since completion of
her last round of
chemotherapy and Lou has barely missed
a beat in
life with her family.
Lou is a mother to six children
(2 beautiful daughters) and
(4 great step kids) and proud
Nan/Nanalou to four
beautiful little grandchildren,
two step great grandchildren.
Photo taken November 2012, Nice, France
December 10th, 2012
near Melbourne, Victoria.
Well!!!!!! GOOD NEWS!!!!!
Cancer stable after two mths!!!
In other words it seems to have halted
its aggression for the moment
so no surgery/chemo atm and to come back
in two mths unless something
happens in the meantime!
Alan (my oncologist) said it is
quality not quantity that matters!
So excellent news -
I am really working on staying well
and keeping it shrunk.
There is more thickening which means
tumour build up however it is
not racing ahead atm!
Thank you to everyone for
your beautiful and positive words,
thoughts and prayers.
I luv U all! xx
Thursday, February 7, 2013
After one lost blog of a couple of year's ago
I have finally started a new one
and this is my first entry!
Every morning when I wake up and
ask myself what is on my list
of things to do today,
make a blog pops up always
and I remind myself 'today is the day'!
However up until now it has
been in the too hard basket.
Not sure what I will write in this blog
as so much has happened over
the last few years,
in particular with mesothelioma
Random thoughts I will jot down
from time to time and try to
put dates to these thoughts.
Depending on how exhausted I am will
also determine how much blogging that I do.
Sunday, February 24th 2013
A slow start for today
just trying to grab back some lost energy,
no doubt an earlier night
meditation and waking up tomorrow
after a goodnight's sleep
will see me
regain my energy levels!
This is part of living with
I go with the flow
while my energy levels are good
I keep on going and work thru tiredness,
usually it works, sometimes
I have to stop and smell the
roses for a day or so!
I woke at 7am and couldn't
lie in bed any longer, got up,
fed our beautiful siamese cat
with his brekkie
(free range chicken that he loves),
Made a green tea and toast for myself
then sat in my comfortable chair
and watched TV to get the latest headlines
and also see if it will be a
high fire danger day here
Luckily there are not major outbreaks
of fires close by, although there have been
a few started by 'nutters'
most of these have been able to be contained thanks
to the dedication of our CFA
(Country Fire Association)
members and volunteers.
Later today - depending on whether it is safe
to return home or if we need to
evacuate due to the high fire warning
will determine what the day brings!
March 3rd, 2013
Time to call my oncologist
Last night I had a very uncomfortable sleep.
Went to bed with a back pain coming
through to the right lung area
that started a few minutes prior to getting in bed.
Within a couple of hours the pain was
thick and fast coming
with a throbbing sensation,
similar to the pain when peritoneal,
and then again when pleural meso
presented itself all those
Both times it was overnight and
then went away in the morning.
Enough to sounds alarm bells for me.
This time, pain tablets have done nothing
to relieve it and the only mild relief
was my old faithful wheat bag that
I heat in the microwave for a few
minutes and then put it on the area
of pain to give warmth to that area.
The pain has now eased so I will contact
my oncologist and get an appointment
this week to discuss bringing the
PET scan forward before I go to Washington
as I need to know what is happening so
that I can deal with it.
Living with Mesothelioma is dealing with
what presents and getting on
with daily life in the meantime for me!
Below is an extract from a recent article
in March 2013 written by Nancy Meredith
In addition to travelling extensively
throughout Australia and Europe,
Lou has travelled to the United States
to Santa Monica,
Disneyland and San Francisco,
to Chicago, up the Michigan coast,
and to Niagara Falls.
When asked what her quality of life is,
Lou responded with a resounding,
"Excellent" She added,
"I live in the moment and
universe take care of the big picture."
Although Lou has endured countless
surgeries and rounds of chemotherapy,
it hasn't crushed her spirit.
If anything, Lou's energy is buoyed
by her passion to prevent others
from having to suffer the
consequences of asbestos as she and her father.
Lou is one of the best known
mesothelioma advocates in Australia,
and perhaps the world.
As a representative of the
Bernie Banton Foundation,
an Australian foundation that provides
and information to
asbestos-related disease sufferers and
their families while raising awareness
of the dangers of asbestos,
Lou will take her advocacy to Washington,
DC later this month as a participant in
the 9th Annual Asbestos Disease Awareness
Organization's International Asbestos
Monday, April 1, 2013
Lou's Washington DC Asbestos (ADAO)
global conference speech.
Well I am back home safe'n'sound
after 11 wonderful nights in America!
As part of the Bernie Banton Foundation team (BBF)
we all met at Melbourne airport
on Tuesday 19 March 2013 7am.
Geoff Fary, John Carter, Rod Smith,
Karen Banton and myself.
After a quick check-in and
through customs we were ready
to board our 10am flight
(Qantas A80) bound for LA.
Thanks to John, Rod and Karen
I was able to secure three seats
together making the flight
bearable to lie down, sit up
and more importantly stand up when
I felt my breathing getting tighter.
We landed safely on Tuesday morning
(LA time) after a 15.5hr flight
and a taxi to the beautiful
art deco Georgian hotel.
The ADAO 9th conference officially
started on Friday,
however by being there a day earlier
we were able to make contact with
lots of wonderful people who were
attending the conference so by
the time the conference started
we were all old friends who
had actually met in person rather
than on face book/emails.
Heather Von St James and Lou
Raya Bodnarchuk, Louise and Ivana Mihajlovic
A great conference to raise
global awareness and one that
I am so
proud to have been able
I feel that our BBF team
did us all proud and it has continued
to keep Australia on the
with raising awareness,
advocacy and support
Sat morning breakfast, registration
and 30 speakers from around the world.
A very proud moment when Karen was
presented with her inspirational award.
Geoff was the last speaker and was absolutely
wonderful in what he presented.
Australia is really at the forefront of
asbestos education, advocacy and awareness!
Sunday brunch with keynote speaker Karen
presenting a wonderful insight
to her life with Bernie.
Karen Banten and Rod Smith
I followed with my speech
and then presented an award to Linda Reinstein
on behalf of all the mesothelioma
warriors around the world.
April 3rd near Melbourne, Victoria
Keith and myself saw my oncologist
Allan Zimet this evening.
All went well, long talk.
CT scan before next Wednesday to see if
any progression since 2 weeks ago
there is any fluid.
I am happy with this.
I am in control for the moment! xx
Now, my visit on Weds to see my
oncologist Allan Zimet and see what the
medical round the table team at the
Austin Hospital had to say.
Basically the jury is out.
they cannot decide/agree what to do
Malcolm Feigen was there and put his
hand up for me to come and see him in May
for an appointment and discuss radical
radiation treatment to the
diaphragm area for starters.
As Allan said 'quality not quantity and
cancer still growing'.
I am happy for the moment and
most importantly IN CONTROL!
At the moment my pain is on hold
I am working through this at the moment.
My mesothelioma is having a respite holiday in Tassie!
We have been here for 3 weeks now and
I am feeling very relaxed and
so it my meso.
Beautiful walks along the beach,
lots of reading and pottering in the garden.
Drives in the beautiful countryside
to Launceston (Cataract gorge walking)
and Hobart (Mona art gallery)
plus catching up with friends etc.
Visiting our favourite cafes
with views of the Tamar river.
Go back to the bad pain I was experiencing
prior to my trip with Bernie Banton
Foundation to Washington for the
ADAO annual asbestos conference when it was a
case of quality over quantity of
life and trying to get a balance of this
through my mind
(mental and meditation) and medication.
I was so glad that I went to America,
at the time I felt if it was the
that I ever did then I had achieved
so much by just being there and hopefully
helping put Australia on the map with
the Bernie Banton Foundation
as to what we are achieving here
with awareness, support,
research and advocacy.
I cannot thank BBF for giving me this opportunity.
Today we lost another beautiful warrior in the UK
My heart goes out to his family.
May he be at peace
surrounded by beautiful love.
So many living with an ARD
(asbestos related disease)
are not travelling well at the moment.
My heart goes out to them.
We cocoon them with love, strength and hope.
Today we drove to Launceston,
walked around Cataract Gorge,
had a drink there in the sun and
watched the peacocks and their
I am off to bed, tomorrow breakfast
at Beauty Point overlooking the Tamar River.
A week of heartache thanks to deadly asbestos!
More beautiful lives have been taken early
thanks to deadly asbestos and pure greed
of those who knew that asbestos
was deadly and did absolutely
nothing to warn innocent people of these dangers.
Instead they chose to mine and use asbestos
in everything possible without warnings that
asbestos exposure is deadly.
To name a few beautiful warriors,
Debbie, Helen, Noura and more recently Janelle.
Janelle (USA) lost her life at the young age of 37 yrs!
This morning at the Olivia Newton-John
Cancer Wellness Centre for my
appointment with the radiation
I was lucky to catch up with Diane
(a beautiful meso warrior)
who was also there for her follow up appointment
with her two
Amanda and Briony.
My results from yesterday's visit
to see the radiologist
more CT scans needed early next week
then back to medical
oncologist for results.
Tumour activity is also now near the heart,
a bit closer to the liver,
in right diaphragm
and some in my back near spine
So the bloody thing is growing.
However I still alive and kicking!
Janelle with her husband Andrew and son Carson.
How cruel is asbestos and greed!!
We must continue to globally ban asbestos,
the mining, production and use of asbestos
and also heavily subsidise assessment,
removal and disposal of this terrible and
deadly product before it kills many
millions of innocent lives.
no safe asbestos,
asbestos kills - simple
So many people think that
as they have been
exposed to asbestos in
that they are immune to
getting an ARD
(asbestos related disease)
Well unfortunately for many of these
innocent and naive people
it may be wrong
Usual time until diagnosis can be 10 to 40
and also leading up to their
they may experience strange
mine were bad migraines and
chronic fatigue to name a couple of things.
Minimal exposure is possible to getting
there is no hard and fast rule that
the exposure can be minimal or
Asbestos does not separate,
it grabs whoever is in its deadly path and
laughs in our faces as does the greed of
some parasites who feed of it!
opportunity to grab a photo.
Amanda Lee Diane, Lou and Briony Duff-Tytler.
I had my appt this morning with the
radical radiologist, and
because my tumours are starting to
form up/pleural/heart and peritoneal
and close to liver/around heart
he is thinking twice about
giving me any radiation.
A CT scan/round table talk with
my oncologist and medical team to
discuss if he can do anything
There is also a slight possibility
of a phase 1 clinical trial
June 30th, 2013
I found it hard to get out of bed today,
very fatigued and it took
until midday to come good.
My breathing was a bit shallow,
swelling of fluid, tightness in the diaphragm
area and under the chest area though
nothing major that I
couldn't work through myself!
We went for a drive up to Mt Macedon
and stopped to get our mail there
then did a short walk.
Half way up the hill I started to get
chest tightening so we turned around and
walked back to the car and
Tonight I feel better although my tummy
area is still tight with fluid.
It will pass.
No word on my appointment with my oncologist as yet.
I will phone in the morning.
The radiologist, Malcolm Feigen was presenting
my case last Thursday to the multi
discipline medical team
and will then report back to
my oncologist Allan Zimet.
So hopefully this did happen Thursday,
if not it will take place this week and
my appointment will be scheduled for then
Monday, July 1st, 2013
Today I seem to have no energy,
I took my time getting up this morning and
probably would have stayed longer except
Charlie (my siamese cat) decided he wanted
his breakfast so would jump over me in bed
onto the floor then repeat this exercise
until finally I got up and he got fed!
My oncology appointment is now scheduled
for this coming Friday 5th July at 5pm in Melbourne.
Results of my recent scans and also
Tuesday, July 2, 2013
Palliative diagnosis and care for mesothelioma
When I was first
diagnosed all the
"it is palliative treatment only for
mesothelioma as there is no cure."
That is fine, whether it is invasive
treatments or not, it is how we live our
lives with this palliative care that
I believe living in the
moment is vital for
Don't stress about the
let the universe take care of
We have no control over that
so why worry about it.
Sunday, July 7, 2013
Oncology appointment Friday 5 July 2013
2 week's ago I had a
full CT scan following
a visit to see the
who requested a CT scan and a
with the Multi Disciplinary medical
on a Thursday at the Austin hospital
to see what they thought
and if it were
possible to do some radiation zapping,
he felt it was pretty well impossible
get to the area that would need it
being close to the liver and heart.
Last Thursday the 'team' met to discuss
and my appointment to follow up
was with my oncologist Friday
My oncologist Allan
Zimet told us
that unfortunately the 'team'
up online, my scan results so
had to rely on my previous pet scans
been already discussed
two months ago at a
Multi Disciplinary meeting
and no one put
their hand up to touch me
other than the
radiologist who was
prepared to discuss my
case with me then.
Allan said the
CT scan was okay,
not much increase since
the last one
and that the team were still
going to touch me due to the spreading
of the mesothelioma tumours.
the radiologist put his hand up
appointment to discuss
my CT scan with him
radiation close to the heart
as some nodules there are of concern,
if he decides that he cannot do radiation
then a possibility maybe of some form of
chemo for the heart area only.
back to see the radiologist
Mon 29th July.
Our trip home in the car unfortunately
found myself being pretty quiet
Keith drove in the
peak hour traffic and
had to put up
with silence from me!
It takes a while to digest the information
from my oncologist and the reality
can seem overwhelming,
particularly when I seem so well and
the meso is still travelling.
though I meditated and
went to sleep
I was awake early hours of the
and got up, made a green tea
and sat in a lounge room chair
(cat) for a couple of hours
back to bed and eventually some sleep.
I awoke with a tight chest and
that has plagued me
both yesterday and
Maybe it is just the cold
I know I am fine now after
digesting this oncology visit.
Thursday I caught the train (coach)
the city and visited a
beautiful friend in
hospital who is
doing it pretty tough at
my heart goes out to her and
On a bright note they have
had another little grandchild come
into their lives to
love and cherish
I then wandered around the
sat down in Degraves Lane at a
with a nice china pot of tea
when an old friend who I haven't seen
couple of years walked past.
down for a chat then
we walked over to
where I continued walking
my daughter Jo and little grandkids
at Disney on Ice show
it was fabulous and
to see the
litte kids faces light up was
Altogether for the two
I went on 8 trains and 2 trams!
So easy to get around Melbourne
surrounds when public transport is working!
Tomorrow is another day and one
will be just perfect!
night I am taking Keith along to see
Engelbert at Hamer Hall, Melbourne city!
This will be my 5th time seeing this
wonderful showman and singer!
you some/many people
would not agree with
July 25th, 2013
We have only recently returned from 12 days
in south east Queensland
catching up with
friends and was so pleased to be
able to meet up with some of our
mesothelioma family while on the Gold
The first evening we attended
a birthday dinner for Keith's brother -
Ross who turned the big 60.
night spent with family
The next night he held a party and we
caught up with grandkids and son Elton.
So very proud of him,
he has just moved
back to Queensland/Brisbane
where he is
working in a profession
that he loves and
is so good at too
- Building Design.
Friday morning I caught the bus to
Pacific Fair shopping town and met
her beautiful mum Margaret.
their brother/son Peter
We had a lovely time catching up
remembering Pete and his kids.
to spend time with my
my 2 little Brisbane grandkids
Lux who is 4 and little Evie
who turned 3
while we were there.
We went up to
Sunshine Coast for a couple of
celebrated Evie's birthday there.
The boardwalk is so amazing and beach
I did heaps of walking
with the stroller!
Monday night we
visited Steve and Gail Cook
for a wonderful meso dinner
party with Pat, Marilyn and
A wonderful evening catching
up on meso/and we all got along so well.
Thank you to Steve/Gail for hosting
night at their place.
Steve had chemo
that morning while
Pat was going to have
chemo the next day
Two very brave and
Tonight we had a
birthday dinner party
for our wonderful
neighbours who very kindly
looked after our
siamese cat Charlie
when we were in
On another note, the day
went to Queensland I had an
appointment with Dr Feigen/radiologist
Olivia Newton-John cancer centre.
went through my last scans and
said that he
couldn't help me.
So back to see my
Monday afternoon and
chemotherapy around the
I have just finished
skype with Jan from UK
- she is doing it
tough at the moment,
my heart goes out to her.
I hope the medical team can help
through this big hurdle
she is facing.
It appears that the medical team
basically given up on her.
I know she
is much stronger
than what they give her
she is a fighter and I love
her so much.
There are others who
are doing it tough
around the world and my
heart goes out to them.
Sunday, July 28, 2013
Asbestos Cancer Melbourne Gala Dinner 2013
Biaggio Signorelli Foundation
1st Annual Melbourne Gala Dinner
to raise funds to create awareness,
earlier detection and improved treatment,
and ultimately find a cure for Mesothelioma
Last night in Melbourne I was very
honoured to be able to attend this
beautiful gala event with my husband
Keith and Rod Smith/Karen Banton
all representing Bernie Banton Foundation.
A black tie event, it was a good excuse to dress up,
kick our heels up and enjoy a
spectacular night with other like
minded people who were there for a good cause
raising much needed funds for mesothelioma research.
Associate Professor Paul Mitchell,
Olivia Newton John Cancer
spoke on the aggressive and deadly nature
of mesothelioma and how much
needed funds are very vital.
I spoke to him after his speech and about me
being past my use by date as there is
no treatment available for me as it is
now about those who have just been diagnosed
and helping those patients with treatments.
That is where the focus is on now.
The longer that I live the more likehood of
running out of options for treatments
due to the nature of the tumour activity.
I did think that long term survivors such
as myself living with this deadly and aggressive
cancer should be acknowledged for
exactly what we are
brave mesothelioma warriors making the
best of a bad situation by living
with this cancer and dealing with
what life throws at us.
After all, being diagnosed with this
cancer should not be a death sentence,
let us live with it well
and carry on helping others who have it,
their carers and those who are
yet to be diagnosed.
We are in it together as a united
Those that think I should be dead
because their partners/parents have been
taken much sooner (such as my dad too)
to mesothelioma need to remind themselves
that I am a fighter and also continue to
fight for their loved ones
who are no longer able to do so
thanks to deadly mesothelioma.
I stand up for what I believe in and
fight for justice namely asbestos awareness,
advocacy and support!
I will keep on fighting for myself and
everyone else until there is a global
ban on asbestos, and when asbestos assessment,
removal and disposal is heavily subsidised
in Australia for all to have access to.
We need to remove all asbestos from every place
in Australia because until we do that,
we will continue to have innocent
lives being exposed to deadly asbestos fibres.
Asbestos kills, there is no safe asbestos!
I live my life in the moment,
enjoy my life and fight for what is right!
Pet scan Weds 31July, 2013
My meditation time!
This morning was my PET scan at the
Austin hospital, Melbourne.
My previous PET scans have been in the
duration of 2 hrs to 3 hours,
this one took 1.5 hours due to
the new machines and rather than
undressing and putting a gown on
it is now possible to leave clothes on
apart from anything with zips or metal.
The radio active dye inserted lying down
then on my own lying totally still for 1 hour
pure meditation time for me!
Then I was ushered into the twin domes
where I had my head put in a hold and
was told to lie absolutely still for
30 minutes while going in and out of these domes.
Easy peasy and out of there by midday!
Results on Monday afternoon with my
oncologist Alan Zimet at Epworth hospital.
Sunday, August 4th, 2013
Weekend and visit to oncologist tomorrow!
Yesterday we slept in after a busy week
spent mostly in Melbourne.
say, because of this sleep in,
was a night where I
couldn't really sleep
and just laid
there until I got up about
made a green tea and turned the
Saturday we went up to
Mt Macedon Trading Post/
and where we have our
post office box for
As it was absolutely
when we left here,
I put a
on and jumped in
when we got up to our gate
there was a family of kangaroos
a row watching us,
usually the whole family
stand there including uncles/aunts
however yesterday there was the big
kangaroo, mummy kanga
with a little joey in
her pouch and
the little kanga next to her.
Keith went to take a photo but
too cunning and jumped away.
visit into Gisborne
for the monthly
where we bought 4 Rosemary
replace those that died in the
Now the rosemary hedge will
be complete once again.
in the garden this
then made dinner, 2 banana
free range chicken in the oven
for Charlie (our siamese cat)
... just because the
oven was on
and I felt like it!
Normally I cannot be bothered to
do lots of
I find it too exhausting whereas
used to love cooking/entertaining.
Guess my energy levels are depleted
my breathing at times
NOT THAT IT STOPS
Tomorrow a visit to
my appointment with
oncologist in Richmond
for results of the
recent pet scan
(last Wednesday) and to
compare with the
previous pet scan of March
possible chemo where tumours
close to heart area,
my oncologist is
this might be causing my
I hope to see my
daughter in Melbourne
and little grandson
My daughter is expecting her
third bub next week,
so I am on standby
race down there and mind the
kids when needed.
Yes lol I am a
I feel for some warriors
who are doing it tough
at the moment around
all I can say is to just live
in the moment and get through it,
with the pain
and always remember we
are here for you.
Monday, August 5, 2013
Oncology visit/results Monday 5 August 2013.
Treatment back on the list for me!!
A freezing cold day here and a day where I kept
myself busy until we caught the train to
Melbourne for my visit to see the oncologist,
Alan Zimet at his rooms in Epworth hospital, Richmond.
On the way we stopped in Degrave St laneway,
Melbourne city for a ritual of my green tea
in a beautiful china cup.
Keith his coffee and sat outside
at the Little Cupcakes cafe
'people watching and also a toast to a
good result with my oncology visit'!
My oncology visit was everything but that!!!
Alan said 'not good news,
pet scan has come back with
cancer growing more'!
So chemo to start tomorrow at
John Fawkner hospital in day chemo
then overnight on Wednesday for the
cisplatin chemo to be flushed for
24 hours and most probably a PICC line put in
(this will be my third picc line).
Blood tests including the mesothelioma marker
was ordered and done at the hospital's
pathology section before getting on
the tram/train for home.
Alan said without treatment the cancer
is thriving, so hopefully with chemo
(pallative chemo) it will stop it in its
tracks again or stabilise
I thought that Alan would just say
'not much change since March,
come back in a month'!!!
Ten years ago for peritoneal mesothelioma
I had cisplatin/gemzar (gemzidabine).
4 years ago for pleural mesothelioma
I had cisplatin/alimta.
There is no other treatment option so
I AM SURE that this will work again,
it just has a bigger job to do
this time around!
A visit to the shops tonight for my
supply of cranberry juice,
LSA mix/organic yoghurt,
gluten free products to help me get
through this round of chemo!
Keith is in shock!
I feel for him,
he is my solid rock!
Once again our world has been
turned upside down!
However we will pick up the
pieces and get on with the business of
surviving this deadly asbestos
cancer and doing it well!
Life is for living
5th August, 2013
Mesothelioma can go to hell!
Update from Keith this morning on my chemo.
Hi all in my email menu !
Once again, apologies if you get
this nasty news 2nd hand or
doubled up as it goes "universal".
We saw Louisa's Oncologist,
, at Epworth Hospital in
Melbourne yesterday afternoon 5th Aug.
following her PET scan last wednesday.
Results - new cancer tumours growing
on left right side of chest area above
below diaphragm, plus
buildup in abdominal area.
Zimet wants immediate chemotherapy so
Louisa will be
admitted to John Fawkner
Private Hosp in Melbourne today at 1pm
for an initial 2 nights.
6-8 weeks of chemo will follow.
As usual she is looking great
will fight this latest upset
as she has for the last 10 1/2 years.
I may be hard to get for a few days
but will keep you posted
All the best to everyone, Keith
Tuesday, 6th August.
just heard from oncology staff
being admitted to hospital at
1pm today for chemo rather
than day chemo/home then back tomorrow
August I was admitted to
the hospital in the wonderful
chemotherapy ward - 2West.
It is amazing to think that most of the
staff have been there on my journey
my treatment commenced in 2003
at this hospital.
I was lol treated like a STAR from the
time that Keith and myself checked into
the hospital where a lovely lady Theresa
did the paperwork and
rang through to 2West
to check that 'my bed was ready and hopefully
in a nice single room'
Theresa has been there too all these
years and she is such a
beautiful person too.
I settled into my room, then
was sent downstairs to theatre for
line to be inserted on my right arm,
it much easier for the chemotherapy
to be inserted directly into
without me being pricked
and poked as most
of my veins
tend to collapse when having
Next hydration and then
chemotherapy drug GEMZAR commenced.
Yesterday hydration for nearly 24 hours
commenced and in between I
was given the
chemotherapy drug Cisplatin.
I had a
weird reaction prior to the
and while it was going into my veins
jaw of my mouth/neck and chin - weird.
Luckily my wonderful oncologist Alan Zimet
was doing his rounds and arranged for
cortisone and an antihistimine to be
Eventually both these
drugs helped to calm the situation.
A very brave and strong mesothelioma
visited me in hospital on both
my darling husband came into see me
Two of my sister in laws came in
thank you for your visits -
meant so much.
This morning I was
quite drained etc,
however with some
tapping, positive thinking,
a PICC dressing
change, shower and
Keith waiting to take me
I was set to go!
I couldn't walk too far
was not something
that I thought would hit
me so fast after
only 2 lots of chemotherapy!
time we arrived home I was
exhausted, and felt slight
nausea coming on.
However I decided to
enjoy the beautiful
and head outside - Charlie
5 year old siamese cat
decided to follow me
and we slowly took in
walked up to the gate, started to
pick up some
small branches around the
in between sat and rested for a
and just enjoy being ALIVE AND
One sadness is not
being able to be there
next week when my
daughter Jo has her baby -
I was on standby
to mind by beautiful little grandkids,
however with chemotherapy it is not an
due to the chemicals/chemotherapy
Better not to take the
you can bet I will be visiting
as soon as
I am given the clear in between
this chemo regime!
The regime will
be an 8 day cycle then 2 weeks off
about 2 months then a scan and
it will be a
wait and see
hopefully I will again
receive a stable or
better still -
shrinkage message from my oncologist!
Gemzar next Tuesday in Day Chemo Ward at
John Fawkner hospital where it is really a
place to visit thanks to the
I am okay - taking
my tablets for the next
couple of days
thanks to my carer Keith who
is doing a
fabulous job of reminding me of
I had forgotten since the last chemo.
For example a salt mouthwash after
meal and before bedtime
years ago I had this combination
then in 2010 Alimta and
Once again a beautiful
rainbow of love,
strength and hope coming
mesothelioma warriors around the
- You are all so brave.
thank to all for your strength,
healing vibes they give me
the strength to
keep on fighting for myself and
else and in particular those
who have lost
their beautiful life to this
Thursday 8th August 2013
Today it was a very cold winter's day here
overcast, windy, wet and freezing!
One of our foam seats from the patio got wet
so I put it on the clothes airer by the
reverse cycle air conditioner.
Charlie climbed up and went to sleep
with the heater on him!
A very smart Siamese cat!
Sunday, August 11th, 2013.
Mesothelioma chemotherapy ten years ago
same treatment - a nightmare for me!
Today is day five since leaving the hospital
after heavy dosages of Gemzidabine (gemzar) and Cisplatin.
I should be feeling on top of the world!
Following religiously the medications after
coming home including dex (steroids)
and anti nausea meds I have had side effects.
Lucikly no nausea thanks to the heavy internal
dose ages given in hospital as well.
Constipation has been my biggest problem -
I have tried everything and still no luck,
will ring the oncology ward today and
also drop into the chemist again.
My skin is swollen, and bright red and
I feel very bloated!
The cisplatin does this to me,
however I did think that I would have
coped by now and been back to normal health!
Ha! what is normal health living with mesothelioma !!!
Living with mesothelioma
when something presents itself
I deal with it, that includes a visit
to my oncologist to see what he thinks.
In my case last week - I was FINE,
slight breathing problems
so a pet scan was ordered.
Bingo - fluid/tumours increasing
immediately, chemotherapy the following days
to see if it will STABILISE for a while!
Two weeks ago while in Queensland everyone
said how well I looked.
If you saw me today
it would be another story.
Sunday 11th August, 2013
Early this morning at 3am, while
washing my hands and looking in
the mirror I saw my own beautiful mum.
Not the mum that I really want to
remember when she was ill and
dying of dementia and a total
vegetable locked in her body.
Mum was staring back at me,
it was me in the mirror and Mum
was there to wait for me.
I said to Keith 'Mum is coming for me'!
What a horrible thing to say to
my beautiful husband,
my soul mate who has been on this
journey with me all the way.
Every step of the way as a team.
His beautiful soul mate being taken from
his life thanks to asbestos and not
being able to fix my problem
To keep me alive and well, enjoying our
time together in old age with family,
friends and travel.
When I said this to Keith,
a flash came into my mind thank goodness
and I said 'Mum is here to help take my
pain away and help me deal with
she doesn't want me to join her for a long time!
I am sorry warriors around the world that
this posting sounds grim,
it is just a fact being on chemo.
On another note, family and my cousin
from Sydney came to lunch yesterday.
A special thanks to my beautiful sister in law
Cheryl for making it so special with her cooking,
preparation and flowers
She took over where I would one time have loved
to be doing this for everyone,
pampering them and making everyone
feel special and loved.
After they left, Keith, Charlie
(our Siamese cat) and myself took,
and a cuppa out to the balcony,
sat down and looked out to our gorgeous view
Sun shining, the garden coming into
spring flowers and the view of the
mountains in the background -
and said this is heaven living here!
I then pottered around in the garden
transplanting violets/forget me knots and
getting some tiny weeds out of the ground
I felt good being in nature!
Today will be daylight soon and another day,
windy, blustering and wet!
I look forward to the daylight when my mind is not
playing havoc with this chemotherapy!
To all my meso warriors, carers and
others around the world.
- I luv you unconditionally
and may you be having a beautiful day
Tuesday, August 13th 2013
Chemo delayed due to platelets being low
Yesterday (Tuesday) we made the round trip
to Melbourne (170kms)
to have my third dose of chemotherapy
treatment Gemzar in day chemo ward
John Fawkner Hospital.
Day chemo greeted us like old friends,
this is my third round in 10 years and
most of the staff are still there
making patients and family very welcome.
We have become very friendly with some of the
staff over the years and always drop in
when visiting the hospital.
My PICC line was dressed,
it is slightly bruised, however due to,
being a week old this is pretty normal.
Bloods taken, Keith took them to pathology
(next door building) while I made my way
across to see the oncologist.
He said "because of the
very heavy dose
of cisplatin/gemzar last week.
Your system is toxic, we will see how it goes,
I asked him what my chances of
survival with treatment and he said
" I am pretty confident a year or 2, maybe 5 yrs".
I said I am happy with that and will get through it again!
Keith brought in the blood results and
straight away my onco (Allan Zimet) said
"chemo off this week due to low platelets,
come back to have picc dressed next week and
see me to discuss when next chemo"!
Home via Le Fruit 'N' Vege organic cafe/fruit shop
for a kiwi fruit smoothie for protein,
feeling very fatigued and body starting to ache
Charlie and myself sat in our comfy chair
by the open fire place until
about 9pm then went to bed
NO COMPUTER lol until now 2.48am!
So, with the delay in chemo for at least another week
my immune system will have a chance to get stronger!
I am happy with that!
When we arrived home the most beautiful
flowers were waiting for us.
A big thank you from the bottom of my heart
to Jan and Gary in UK,
your gift means so much,
just knowing that the love from U guys
has come half way around the world
and is now sitting in a beautiful vase
on our coffee table
I can feel the love.
Wednesday, August 14th, 2013
Day 8 after 2 chemo treatments.
I am feeling like bile is coming up
and not tasting too good!
Not a pleasant feeling however
one that will pass eventually.
Sleep was from 10pm to 2.30am so improving each day.
My face is still slightly swollen and I feel bloated,
otherwise feeling much improved!
This morning when the sun comes up,
it is now 4am, we will be going out in the car.
Where we live it is just so beautiful
especially at this time of the year.
Each afternoon I am pottering in my garden,
getting a few small weeds out before
they grow into a problem.
transplanting violets/forget me knots
that are now showing their little heads
everywhere and just enjoying being with nature.
Yesterday afternoon when the sun came out for
a little while I did potter,
feeling quite weak though and
I was exhausted afterwards however pleased
that I had achieved this small and enjoyable task.
To all the brave warriors and others around the world
my love, strength and heart is with you.
We are excitedly waiting for the birth of
another beautiful little grandchild.
could be anytime this week!
my beautiful step-daughter.
has announced that she is expecting
her new bub in Feb 2014.
We are so happy for her.
Wednesday, August 21, 2013
Being alive with mesothelioma and
celebrating the birth of a new grandchild.
My daughter Jo gave birth today to a
beautiful and healthy little boy.
I am going to visit tomorrow and
have my first cuddle.
So looking forward to doing this.
Also, today I have turned the corner.
Two weeks since my last two lots
of chemo, and my side effects have eased,
apart from shallow / tight breathing and
slight bile / metallic taste.
So my immune system is now getting
strength again and ready to have chemo.
Next Tuesday (gemzar) and
Wednesday overnight in hospital
for the cisplatin.
Ten years ago when I actually started having
palliative treatment for mesothelioma,
I so wanted to be here to see
little grandchildren being born.
I am now up to the count of five!
Now my wish is to see every one of them start school.
then after that
we will see what the next milestone will be.
Through sheer hard work
living with mesothelioma.
I have made it this far and
am hoping for a further long time still!
27th August 2013.
Better start to get ready for my
day of chemo in Melbourne today
/Gemzar and then overnight in the hospital
tomorrow night for more chemo/Cisplatin
and the 24 hour flush!
Not looking forward to both treatments
however no choice if I want stabilisation of the
aggressive nature of mesothelioma
August 28th, 2013
Blood transfusion - a week in my life!
Last Thursday I made the train/tram/tram journey to
Melbourne and visited my daughter and little grandkids
and most important with this visit -
my little one day old grandson Oliver!
I had a very special cuddle and took
photos on my new little smart phone
only to delete them by accident when I got home!
By the time I boarded my last train to come home I was
totally exhausted and it took the next
two days to get my strength back.
Yesterday Tuesday we fronted up at the day
chemo/hospital for my weekly PICC dressing,
bloods taken and across to see my
oncologist for the okay to have chemo.
No luck as I was anaemic and my white
blood cells way down so
NO CHEMO HOWEVER A BLOOD TRANSFUSION
WAS ORDERED IMMEDIATELY.
So 4.5 hrs of sitting there having two lots of blood,
we arrived at day chemo 11am and left at 6pm
a long day for both of us.
A good friend who also has
peritoneal meso came for a visit
part of Lou's team!
Keith and him sit there while I have my PICC
cleaned and chat away then we all go over
to wait in my
All week I have been experiencing
bile taste/extreme breathing difficulty
and tightness of the chest.
Tonight I seem to have turned the corner
thanks to the blood transfusion,
no bile taste and the breathing has eased.
The next side effect is my hair falling out today
maybe by tomorrow it will have stopped.
Chemo back on the agenda next Tuesday
for gemzar/day chemo,
then the following day overnight
in the hospital for
cisplatin/24 hour flush.
The above link is a story of my dad and myself
on Deidre's website in New Zealand.
Well already for chemo today
chemo delayed until next week due
to my being anaemic and
low white blood count!
So I had a 4.5 hour blood
transfusion this evening!
Oncologist said my shortness of breath
tightness is probably because of this.
I hope so
Well my hair started to fall out slowly this morning
At least I won't have to have a haircut or
or have it thinned out for a while!
Monday, September 2nd, 2013
Chemo twice this week.
I have built my immune system up and
my body is ready to face further chemo
tomorrow (gemzar) and again overnight
in hospital on Wednesday (cisplatin),
then gemzar the following Tuesday.
I am not looking forward to this round of chemo
however there is no choice but to have it!
Yesterday in Australia was father's day
(dad's day) and happily celebrated by most dads.
Today is Keith's birthday and a very special day
celebrated with family and
Chemo is so hard on the body,
mind and immune system.
It also is not easy for our partners/carers
to sit back and hold our hands thru this ordeal.
They live the journey of mesothelioma
with us all the way,
coming to appointments,
looking after us at home and
in the hospital when needed,
when they phone,
email and turn up in person.
We both crave for a normal day
when we can forget about meso,
treatments and just live in the moment.
Just living in the moment is
so important to do this -
we cannot plan for our future -
it has been taken away from us,
we can enjoy each waking moment and
take time to smell the roses and
may there be many more days like this
for us and others living this journey!
11th September 2013.
Chemo cancelled today due to low bloods,
nausea this morning and back pain.
CT scan 23rd September,
then reduced doses chemo 24th and 25th Sept.
Will post on my blog tomorrow.
We have lost another beautiful warrior,
Barry in UK and also a beautiful warrior Lyn
in Maryborough Australia.
Both are free from pain
Thursday 12th. September.
I have started to come good
and feel normal again
apart from a bile taste
coming up from my tummy area
This now comes and goes.
Today we went for a country drive
and this afternoon I potted
about in my garden.
I am planting more lavenders,
olive trees and red petunias
to go with our French inspired home.
Weeding is a big problem at this time of the year
(Spring) however slowly I am getting there.
Back to the hospital tomorrow for
my picc grease and oil change.
When having chemotherapy -
there are so many things to consider for
the patient and also their partner/carer
- who both have a rough time on
this journey of sheer hell.
One minute your body/mind is okay and
then all of sudden the chemo
drugs/strong medication kicks in and bingo
a roller coaster of a ride for both until
the tide changes as did mine on the 10th day
when I felt normal again.
This week is about getting my immune system
built up to cope with the next lot
of chemo on 24th and 25th of September.
Monday, September 16th, 2013.
Life is good!
Good soaking rain here fabulous for our garden and
all of the plants that are coming up due
to our beautiful Spring weather,
plus the new plants that I
have been busy
putting into pots and in the garden.
In a month it should look wonderful
then lol our hot dry weather will start once again
and we will have to be
careful with the tank water
and hope we get rain then for the garden
and to fill up the tanks
however that is a couple of months away thank goodness.
Well today's visit to day chemotherapy ward
at John Fawkner Hospital in Melbourne
took an hour by car.
Good traffic flow and we were there on time
for our appointment
Picc actually had some water in it,
not sure how this happened and luckily
it must have happened today when having a shower
as I have plenty of sterilised
waterproof bandages on it.
The nurse Jess said that if it had happened a
couple of days ago my arm would have been very itchy.
Once the picc was cleaned, dressed
and flushed we were allowed to go.
Keith had a doctor's follow up appointment
for his PSA reading
(follow up from his robotic prostate cancer operation in January 2013)
and results of xrays/ultrasounds
ALL CLEAR AND PROSTATE READING UNDETECTABLE!
Yay good news and life is good!
I have made some lemon sponge mini puddings
with some beautiful free range eggs
from friends and lemons from a friend's tree
as we are going across to our neighbour's
for roast pork dinner and to sit by the fireplace
and have a chat and probably a glass of vino!
To all my beautiful meso warrior friends,
their family and carers who are not well at the moment
my heart goes out to them and I am sending you all
a beautiful rainbow of smiles, love and strength.
Also to my beautiful girlfriend in NSW
who is not doing too well.
I wish that I could just pop in with some muffins
and give you a big cuddle like you did with me 10 years ago!
Charlie (our siamese cat) brought in another little baby rabbit
yesterday morning through his cat door.
Luckily I was able to hear him and he
quickly shot back outside the door and hid
his prize somewhere in the garden.
Friday, September 20th, 2013
Weekend before Scan/Chemo next week!
We have had 3 beautiful days in the spa country
My CT contrast scan will be on Monday 23rd Sept
morning after the PICC line has been dressed and bloods taken.
Oncology visit Tues 24th Sept for results and no doubt chemo,
then chemo overnight on Weds 25 Sept.
Not looking forward to this week coming!
Monday, September 2rd3, 2013
Scan good results and change of chemo!
This morning while driving to Melbourne I knew in my mind that
I did not want to continue with this chemotherapy regime!
Cisplatin (this is my third time in 10 years of
having this heavy metal drug)
I know, is becoming toxic in my system and
both times that I have had it since August 2013
I feel absolutely terrible like I am going to
just curl up and die, the pain is unbearable,
my weakness is awful and there is just no way of
getting thru it for the 10 days after receiving
it overnight in hospital
as it has to be flushed through my body for 24 hours
as it can be very damaging to all the organs.
I told Keith my news and I think it really threw him for a sixer!
As I just sprung it on him!
He knows that without having chemotherapy my chances of quality
and quantity survival are minimal
and went into slight shock mode!
However he did say that he would support my
decision whatever I wanted.
I did say to Allan that I was good and wanted to
discuss the scan and treatment with him.
He smiled and said "of course Louise, I am sure you do!"
A wait in my oncologist (Allan Zimet)
waiting room was only about 20 minutes.
Allan looked at me when we were called in to his office,
he said how was I and that he
felt (as did Keith too)
that I am looking better now than the start of August
when I commenced chemotherapy (cisplatin/gemcidibine)
after a three year break
We looked at the scan together comparing the previous one.
No significant changes - including no further fluid.
He did say that a pet scan in 2 months
will be better to compare with this CT scan.
I explained about the cisplatin and the feeling that
I was like death warmed up when having it and
I felt that my system is too toxic after 10 yrs of it.
I said that I
don't want anymore chemo and
what did he think of this choice!
He said 'well without the chemo my chances of
quality and quantity survival will be minimal'.
He is switching over to carboplatin/gemcidibine combination.
We discussed this and both agreed that cisplatin is the
more stronger drug that is given to younger and fit
patients that can tolerate it.
Carboplatin to more older patients who would not
be able to tolerate the cisplatin.
The cisplatin has been able to, in the past;
give me quality and quantity for 5 years
then 2 to 3 years.
So a week off
(my immune system will keep on getting stronger),
day chemo next Wednesday (carboplatin/gemcidibine)
that will take about 5 hours and
no overnight hospital stays anymore!
I then will return in 8 days for a further dose of gemcidibine.
I am not really happy with staying on the chemo
however for the moment NO CHOICE
if I want to stay well,
have quality and hopefully quantity of life)!
Allan said his aim for me at the moment
is to be around in March/April 2014
to accept my award in America!
I did ask Allan if I were to cease treatment would he still
support/look after me when I needed it.
His answer was 'of course'!
I think our health system here in Australia
is by far excellent for treatment of mesothelioma
if you shop around and find an oncologist/general
doctor/ who has had experience with mesothelioma
and long term survivors of this deadly cancer.
When I first went to see Allan 10 years ago,
I asked him if he had had
experience with mesothelioma
and if any long term survivors -
his answer was 2 x eight years and 1 x 5 year survivor.
(One went on to live for 12 years with good quality
Same with my local doctor -
I asked him the same and he said
'a few he has treated with mesothelioma and
a couple of patients lasted 2 years'.
I was happy with his answer as at least if I needed
pain medication then he would be able to know what
to give me without having to guess!
There is no easy answer for mesothelioma and treatment.
It is still no cure or closer to finding one.
However I do believe that over the years
palliative treatment has improved although our
bodies seem to be getting immune to the treatments.
Globally researchers need to find a cure/
they need to help us longer term survivors
stay alive and well too,
not just give up on us because
'we are past our used by
On another note, my heart goes out to those
with mesothelioma that are doing it tough at the moment.
Hang in there, get help and you will get thru this!
Today is Tuesday, getting ready to head off to the Melbourne
appointment with my oncologist Allan Zimet
for results of yesterday's scan and blood tests.
We are hoping for stabilisation of the cancer,
shrinkage would be fabulous however at this stage
I will take stabilisation!
If no change/on the rise since start of
when I commenced this third round of chemo
then I will be asking my oncologist to stop the chemo,
enough is enough!
Friday, September 27th, 2013.
Life between chemotherapy!
Visit to Melbourne and National Mesothelioma Day
Yesterday I caught the trains to Melbourne
(3 trains altogether) and visited my daughter Jo
and beautiful little grandkids
including little Oliver who is now 5 weeks old.
It was so nice to be able to visit and not have
the dreaded side effects of chemo hanging
over my head while there and travelling!
Wednesday, October 2nd, 2013
Shhh! Feeling good so far on chemo!
Yesterday a windy journey to the hospital in Melbourne
(about an hr away if a good run)
we left here about 7.20am and got there
just before 8.30am for our appointment
at Day Chemo
Day chemo changed my PICC line,
flush and bloods were taken.
Keith took the bloods up to pathology to wait for results and
then met me in the waiting room of my oncologist Allan Zimet.
Bloods were good apart from white blood cells down slightly.
I asked Allan about the results from my mesothelioma
marker test (the one that costs us $150 out of pocket)
and is the brainwave from Professor
Bruce Mitchell in Western Australia.
It gives an indication of the mesothelium
and true to form mine was up to 12.9 whereas
the last test earlier this year was 4.9.
Back to day chemo to be hooked up,
premeds into the cannula and bingo away we went.
I asked for Allan to order the relaxer tablet that works
almost instantly under my tongue
it did help as I was able to drift off for a couple of minutes
and wake up again, much to the annoyance of Keith and Lyall
who were sitting there in conversation with me
and bingo I was nodding off.
It is the only way for me to cope now
when sitting there having chemo injected
knowing I want to tear it off and get out of there into the fresh air!
Ah ... I have been thru too many over the years and it brings back memories.
The day chemo nursing
staff understand and assist
by getting me out of there as quickly as possible
to all of them I say a big thank you.
you are wonderful in every way!
Many staff have been there for years and all know me
as I do them then - it is a pleasure and makes it so
much better when this is the case.
Better for them and better for the patient,
long term contact especially when they see
long term survivors that do make it
even if we come back sometimes!
Gemcidibine first then carboplatin plus
the hydrating fluids/flushing/pre meds, steroids/anti nausea etc.
Gemcidinine 850ml/Carboplatin 300ml.
Out of there just on 2.30pm - we were happy and straight home!
I slept in the chair on and off watching TV with Charlie on my lap.
(Charlie is our siamese cat).
On the computer last for a few hrs then 6 hrs sleep; back on the computer.
My meds are kicking in .... hoping to have a good day!
We will head out later to pick up our mail up at Mt Macedon,
go for a walk up the hill if the sun stays out
then home to do a few things.
Have a good day where ever you are.
Saturday, October 5th, 2013
Turned the corner! Back in control! Day 4 of chemo!
(gemcidibine and carboplatin)
and feeling BACK IN CONTROL of my life!!!
Feeling totally different on this chemo regime instead
of the gemcidibine (gemzar) and cisplatin.
Virtually no pain
whereas on the cisplatin I felt like I was close
I have been able to manage my side effects with medication,
my mind and best of all being able to use my
lifeline the computer to email/blog/facebook and
keep in touch on a global scale.
I don't want to keep having chemo however
I am being given a lifeline so I am giving
it my best shot and WINNING as I am back in control
of my life!
My heart goes out to the warriors who are doing it tough at the moment
sending a beautiful rainbow of love, strength and smiles to you!
Wednesday, October 9th, 2013
Chemo postponed today due to very low bloods!
This morning a race in traffic to Melbourne for 9.45am appointment
at day chemo ward (John Fawkner Hospital)
for my PICC clean and dressing/blood taken and
across to see Allan Zimet my oncologist
for results of the blood test and okay for
chemotherapy at 10.45am.
Keith took my bloods up to pathology and
waited a good half hour for the slip of paper with results.
We waited over an hour for our appointment to see Allan
as he had so many patients to see.
We knew by the results of the bloods that chemo
would not be happening as
all very low.
I am scheduled for a dose of gemzar and carboplatin on 22 Oct.
In the meantime this gives me 2 weeks off
to get my immune system stronger to tolerate
the next lot of chemo!
Keith was a bit upset that the chemo did not go ahead
as he explained to me, every one that I do not have
is that making my chances of 'survival' less.
I said 'no way - my body is tolerating a heavy dose of
gemzar/carbo (previously gemzar/cisplatin)
in one hit and doing its job
then letting my immune system get stronger by not having
the next dose the following week'
I am happy with this reasoning and believe it is
what is best for my body this time round!
Monday, October 21, 2013
This week has flown!
A visit last Tuesday to the hospital for my Picc line
to be dressed and bloods taken.
No chemo that week was scheduled and
just as well
my bloods were still quite low from the week before.
Tomorrow picc line to be dressed, bloods taken,
appt with my oncologist and the green light
for chemo to go ahead gemcidibine and carboplatin.
My health - I feel really good and like I am
bouncing back to good health once again!
Having the forced rest
(due to my bloods being low)
in between chemotherapy is giving my immune system
a fighting chance to regain strength.
This coming Saturday will be a big day for me.
My brother Chris is marrying his beautiful partner Cheryl.
I am so pleased to be well enough to attend.
0ctober 24th, 2013.
Pretty good sleep 2nd night 6 hrs broken in between
so I am happy with that sleep.
Woke with bile/nausea feeling -
meds and brekkie has just about
fixed that problem.
Will be busy making cakes later today for my
brother's wedding coming up on Saturday.
Looking forward to making them while I am well enough.
November 3rd 2013
Last Tuesday chemotherapy was cancelled
due to bloods being down again.
12th November will be my next chemo date for
2 doses (gemcidibine/carboplatin) and most probably a PET/CT
scan will be arranged when I see the oncologist
on that day for later in the week to see what the
state of play is at the moment with the chemo.
This chemo regime commenced early August 2013.
My hair is getting thin and leaving hair on my pillow,
floor and clothing.
My energy levels are down however I am OKAY!
As for pain - I have no pain and am taking no
medication in between chemo!
I seem to be in a bubble waiting to pop!
The reminder of reality that I am having chemo and
fighting for my life is my PICC line in my arm lol.
Sat 26th October we attended the wedding of my brother
Chris and his beautiful partner Cheryl.
The setting for the wedding was at Rye, Victoria
a garden themed wedding
and one that
was just beautiful thanks to their friends
for hosting it at their property.
Chris and Cheryl have just returned home
from their honeymoon in Sydney.
Friday night they were lucky enough to be
in the right place at the right time.
They saw the launch of Asbestos Awareness
Month for November,
saw the key speaker Don Burke and
also watched the beautiful sails of the Opera House
turn blue for mesothelioma.
Having Asbestos Awareness Month happen is
so important for me to see in my lifetime.
As it is not recognised as yet on
a national state by state scale,
I embrace Asbestos Awareness Month; as at the moment
all we have in Australia is the last week in
November as Asbestos Week.
The majority of people by then are in
Christmas wind down holiday mode and
not really interested in anymore awareness days/weeks
of any description.
Having a month of asbestos awareness in my opinion,
makes much more sense.
Bring on next year and a nationally recognised
Asbestos Awareness Month!
Also with my campaign/petition to have September 26th
recognised as a National Mesothelioma Day
would be terrific to see in my lifetime.
This would then become a global Mesothelioma Day
celebrated on 26 September!
We have lost more warriors to this deadly
mesothelioma cancer since my last blog.
All put up a brave fight and have left behind
loved ones who now have to pick up the pieces and
make sense of their lives without their loved one
thanks to deadly asbestos!
Wednesday, November 6th, 2013
Farewell to a beautiful warrior!
It is with a heavy heart that I write this blog.
At 4.30pm today a beautiful and brave warrior
Steve who lives on the Gold Coast, Queensland
lost his life to mesothelioma cancer.
He fought so hard and yet the deadly asbestos got him too!
My heart goes out to his beautiful wife Gail
who is now left to pick up the pieces
of their life together
This cancer takes the best and
Steve was one of the best!
Today we went to the hospital in Melbourne
for my picc line 'grease and oil change'.
Due to the Melbourne Cup holiday yesterday,
day chemo ward was very busy and
we had to wait 1.5 hours for an available chair
to sit in while the picc line was cleaned and
While waiting we went for a walk and had a
coffee/green tea at a little cafe then came back and
While I was waiting for my picc dressing I was able
to make contact with a guy Dante and his wife Joyce.
Dante has pleural mesothelioma and had just got his scan results
not very good news however his oncologist
(mine as well) was changing his chemo regime and
continuing with the treatment.
It was great to finally meet them and
answer their questions.
While waiting in my chair with the picc line cover off and
the nurse Lana had gone to sterilise her hands,
I leaned over to Joyce with my details
on a Bernie Banton Foundation business card.
My picc line came out!!!
A phone call to my oncologist and he said
'take it out completely as it is
exposed to air'.
So out it came and chemo treatment is
scheduled for next Tuesday,and depending on
whether my veins are okay for chemo or
if I need another picc line inserted
we will see on the day!
Maybe this explains why last week the nurses couldn't
get blood from the picc line!!
Yesterday while working in the garden,
very slowly from me,
as a tightening of my chest was happening
after the lightest work and I would have to sit down
to recover for a few minutes.
Keith was burning a pile of dead wood as
the fire season approaches next month.
All was going to plan and the wood pile was almost out
when bingo - it roared flames up into the air
so high and jumped to another huge pile of wood
that was dangerously near a huge gum tree.
Keith raced to get a hose and I
to get a ladder to cut down branches from the gum tree
that may have caught fire.
After 2 hours the drama was over and we were both
exhausted and grateful
that it didn't spread further.
Monday, November 11th, 2013
My secret for surviving with mesothelioma!
Frequently I get asked what is my secret to
living 'longer' with mesothelioma and keeping 'healthy'.
The day that I was finally diagnosed with
mesothelioma and it reared its ugly head,
meso put life into perspective for me.
I know I will never see my 'old' age
however at the moment I am heading towards that
being in my 'middle' age and living well!
I believe 'living with mesothelioma' is the key
to survival whether it is for
a few months or a few years.
It is like living with a sore foot,
acceptance of having asbestos cancer and
ultimately 'living with it'.
Also 'living in the
moment' and dealing with
whatever happens in this moment,
whether faced with treatment,
scanxiety (waiting for results),
pottering with every day life,
enjoying family and friends, holidays.
No use worrying about what the long term future will be.
No one knows that, so let the big picture
take care of its self
(let the universe take care of that for you)!
Follow your dreams,
plan something nice whether a holiday,
overnight stay somewhere,
visiting friends/family, a movie,
an outing to a cafe, visit to a park.
it is looking forward to something.
This weekend a young couple in America,
Damon and Keshia got married.
He is 18 yrs old and living with mesothelioma
They are following their dream and
wanting to be together.
Congrats to this beautiful couple.
Then when that happens look forward to another 'plan'.
Life is full of plans.
I know it is hard to see
the big picture of life
when living with mesothelioma sometimes.
November 12th, 2013.
Macedon resident Louise Williams has
asbestos related cancer.
She has lived with it for 10 years.
Source: News Limited
Lou Williams credits the quiet and relaxing surrounds of
Barringo for defying one of the most
aggressive cancers of all.
The 58-year-old (pictured)
has had mesothelioma,
commonly known as asbestos cancer, for 10 years.
linked to the now banned building product asbestos,
attacks the lungs, turning them as hard as concrete and,
in doing so, crushing other organs.
Ms Williams is in a one per cent segment of
mesothelioma sufferers who have warded off the
disease for so long.
She is in her third major round of treatment,
after a relapse earlier this year sent her back
into a chemotherapy program.
"I've had symptoms for 12 years,
but I was first diagnosed 10 years ago
when I was given two months to live," Ms Williams said.
"In August, my oncologist put me on another round of chemotherapy
after the cancer came back to my heart and other lung."
Ms Williams moved to the Macedon Ranges
from Tasmania after her diagnosis,
believing if she had only a short time left,
she should live somewhere beautiful.
She has been a passionate advocate for sufferers,
campaigning for many years alongside Bernie Banton,
who challenged James Hardie over their liability.
"Our big awareness push is making home renovators
aware of the presence of asbestos in their homes and
urging them to be wary and remove and dispose of it properly,"
Ms Williams said.
"There is a national register for people to record instances
of exposure and renovators need to be aware
asbestos fibres can be found in old putties
and other building materials that date to the 1980s."
Asbestos campaigners are now pushing for subsidies
for the removal and disposal of the substance
to be offered by the federal government.
Ms Williams plans to accept an award for her campaigning
in Washington in March,2014.
November is Asbestos Awareness Month.
-MORE TO COME-
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