Tuesday, September 30, 2014

PET Scan

PET scan today at 1.30pm Austin hospital in Melbourne.  Fasting from 7am this morning.  I decided to go by public transport on my own rather than by car with Keith as he needed to do a few things here and I enjoy travelling usually via train/coach/tram.   A coach pulled up at the train station this morning at 10.15am as due to school holidays the trains are standing room only by the time they get to our station.  The comfortable coach with 7 passengers on it went direct to Southern Cross station (the terminal station) within an hour.  A train to Heidelberg and the hospital.   Coming home in peak hour was okay to the city from Heidelberg where I got a seat, however from Melbourne to home no such luck - as was standing room only.  Arrived home at 5.15pm exhausted but relieved that the scan was finished.   Results of scan will be on 10 Oct when I see the oncologist after the multi disciplinary round table discussion of Thursday 2 Oct to view my case.

The PET Centre at the Austin Hospital was opened in 1992 and performed the first ever PET scan in Australia. The Centre boasts modern equipment equal to that of any centre in the world and provides PET scanning for clinical applications and approved research projects, including pre-clinical drug trialing.
In clinical applications, a very small amount of labelled compound (called radiopharmaceutical or radiotracer) is introduced into the patient usually by intravenous injection and after an appropriate uptake period, the concentration of tracer in tissue is measured by the scanner.
A PET scan usually takes one hour to perform and requires the patient to lie completely still. If a brain scan is being performed the patients head is placed in a special head rest and immobilised.
The following is a general breakdown of the whole PET process:

  1. Typically the Cyclotron is run for about one hour to produce enough radionuclide required for the preparation of the tracer.
  2. The automated synthesis module is loaded with the chemicals required for the radiolabelling of the tracer.
  3. The radiosynthesis is monitored and controlled by computer.
  4. The radiopharmaceutical produced undergoes quality control tests including chemical and radiochemical purity.
  5. After passing quality control, the radiopharmaceutical is loaded into a syringe and calibrated for the required radioactivity dose.
  6. The patient is injected with the radiopharmaceutical and left for the relevant uptake time.
  7. The patient is placed on the scanner and positioned as comfortably as possible. Scanning is performed for an appropriate time interval to collect sufficient data for an image reconstruction.
  8. The PET Scan results are displayed on the computer and interpreted by the physician.
Altogether my scan took 2 hours and tonight I am pretty exhausted!

I am flying to Queensland tomorrow for a week - looking forward to seeing my newest little grand-daughter who is 3 week's old today, and my little grandkids Lux and Evie as well.  A good chance to have a rest and enjoy some sunshine and warmth before results on 10 Oct of both scans and decision making!

To all meso warriors who are doing it tough, my heart goes out to you.  Sending you my strength, hope and love.

Friday, September 26, 2014

CT scan results and catching up with friends. Mesothelioma National Day

After a funny night of scanxiety - mostly sleep although some disturbed sleep mainly thanks to Charlie running/jumping over my head/body in bed as he had a restless sleep and every bit of light that would come through the window he would think it was morning and want to get up ... so he would disturb me in the process!  I think he just knew that it was an anxious night for me ... !

This morning a catch up in Woodend with friends who are in the process of moving into their newly built home.  This evening prior to my oncology visit we also called in to see a dear elderly friend who is 93 years of age for a catch up and cuppa.

Then on to the hospital for my appointment at 5.15pm.  When we were called into see Dr Zimet, he had the comparison CT scans up on his screen (previous one in July 2014) .... pretty stable since that scan ... there is a large dead mass left hand side of chest wall that appears to be a dead mass/tumour thanks to the chemotherapy .... .  Dr Zimet has ordered a PET scan for Tuesday to see what is happening, if no tumour active then he may decide to drain the dead mass and litre of fluid, however if active then will leave alone and decide on further options.  A round the table discussion at the hospital with Multidisciplinary team will follow next Thursday.

As the Melbourne traffic was in peak hour we decided to head over to Essendon and have dinner at the Windy Hill clubhouse.  Always good to keep supporting the bombers!!!

I think tomorrow we will have a day at home and catch up on jobs around the house!  Mainly outside while the weather is going to be a beautiful warm and sunny 26 degrees.

(Sept 26th) is National Mesothelioma Awareness Day. We take time to humbly remember those we lost and to continue the fight against this horrible disease in UK and USA! Australia does not have a National Mesothelioma Awareness Day - we need to be part of this global day! This is our chance to create awareness, advocacy and educate innocent people on the dangers of deadly asbestos fibres. The more knowledge and awareness we have, the less likely your children and their children of the future will die from deadly mesothelioma asbestos cancer. Please continue to sign the link below.


Both UK and USA have such wonderful events planned on their Mesothelioma Day 26 September - we need to share this day on a global scale to get the message out to all - there is no safe asbestos/asbestos kills!

Monday, September 22, 2014

Mesothelioma Grief, Death and dying talk at University and my CT scans today

This morning up early and on the road about 10am heading to Latrobe University, Bundoora Campus to give a talk on mesothelioma and grief, death and dying.  We had been given clear instructions to report to the Gatehouse and free parking was arranged near the building where I gave my talk.  We did not expect to see so many huge carparks and after a quick lap of the road around the university we found the Gatehouse.  A huge university campus!

My talk with questions and answers lasted just over an hour to third year degree health allied students who are studying a wide range of health studies.  All were very interested in being made aware of asbestos education as well.  Thank you to the tutor and students.

After drinking 1.5 litres of water my CT scans were scheduled mid afternoon - a good scan with dye injected.  Results in Melbourne Friday afternoon to follow.

On the way home we called in to surprise our little great grandson who turned 6 today.

Tomorrow is going to be a beautiful warm and sunny 26C degrees.

To all the mesothelioma warriors doing it tough at the moment my heart is with you and sending love and strength your way.

Wednesday, September 17, 2014

Chemo postponed after scan results

Well we (Keith and myself) fronted up for chemotherapy as scheduled today in Melbourne at the hospital.  Bloods taken first in pathology then a wait to see my oncologist Alan Zimet in his waiting room.  While waiting we talked to others who have various cancers and their partners/friends - it is like one big happy family at times catching up with the latest news/treatments/holidays ... .

Our turn came for us to be called in.  Alan looked at my blood results - all fine and up.   He felt my tummy/chest for fluid and said seems to be not much there ... .  I said that 4 weeks ago when we went to Tasmania I was struggling to walk up the stairs/walk far along the beach ... and by last week I was fine.  SO we both decided to postpone chemo today and have a CT abdo/chest scan next Monday.  This will work perfectly as I am due to give a talk/presentation earlier that day in Melbourne to do with asbestos education..  Always good to combine more than just one appointment!!  When we get results of scans next Friday week, it will be to see what is happening and also whether further chemo is warranted/needed.

Thank you to everyone for your well wishes on my chemo today - it meant so much to me.  Please keep them coming - it is working!!!
To all those warriors who are doing it tough at the moment my heart is with you.

Tuesday, September 16, 2014

Chemo tomorrow!!! New grandchild and home again! Prize winning mesothelioma book a must to read!

Home again!  We arrived in Melbourne early yesterday morning after a very calm and smooth car ferry crossing from Devonport, Tasmania to Melbourne.  6.30am off loaded and on our way home north ... took just on an hour - we were so lucky to just miss the peak hour morning traffic!  Yesterday was a day for on and off sleeping because on the ship we had ocean recliners and nodded off and on with disturbed sleep.
Today we picked up our mail from post office, called into see our wonderful neighbours and good friends who in turn minded Charlie (our siamese cat).  Charlie was just so glad to see us yesterday that he wouldn't leave our sight - by last night he was yawning big time!!  He also was very very vocal telling us all about his time without us!!  He is now curled up on my lap fast asleep enjoying the blast from the heater.

Back to reality - chemotherapy tomorrow.  I have had a break of 6 weeks thanks to our wonderful and restful retreat in Tasmania.  Last week walking along the beach with Keith I really felt as though nothing was wrong with me - in other words NO MESOTHELIOMA lol!!!  By Saturday my tummy/abdomon had started to swell up with fluid again and tonight it is quite tight so a reminder that hey I do have this bloody cancer!

Last Tuesday my youngest daughter Debbie who lives in Queensland gave birth to a beautiful and healthy little girl.  They were discharged yesterday and are doing well at home.  A name is pending!!

Congratulations to Stefano Valenti Campiello Prize-winning Work Before 2014 with his book "La Fabbrica del panico" the story of his father, who died of pleural mesothelioma due to asbestos exposure for having worked at Breda in sesto san Giovanni, the factory of the panic that has so far caused more than 100 deaths from asbestos.
It is also the story of the battles that workers have made over many years against those who knew of the risk they ran the workers by exposing them to asbestos and have kept out of interest. for profit. (Translated by Bing)
Sabato 13 settembre ci sarà la serata finale del Premio Campiello 2014 (Il “Campiello” è un premio letterario, istituito nel 1962 per volontà degli Industriali del Veneto, che viene assegnato a opere di narrativa italiana) con la cerimonia di premiazione del libro vincitore. La cerimonia, com’è tradizione, si terrà al Gran Teatro la Fenice di Venezia sabato 13 settembre. e sarà trasmessa da La7 in differita, quattro giorni dopo, cioè il 17 settembre, alle ore 23.
Il riconoscimento Premio Campiello Opera Prima, attribuito dalla Giuria dei Letterati nel 2014 va a : La fabbrica del panico di Stefano Valenti pubblicato da Feltrinelli che sarà premiato nel corso della cerimonia di premiazione del Premio Campiello letteratura con la seguente motivazione:

"il romanzo racconta una storia familiare, che diventa corale di fronte alla malattia e alla morte per amianto. A narrarla, muovendosi per lasse di ricordi, è il figlio quarantenne che sente la necessità e il dovere di stringere un rapporto più ravvicinato col padre, sceso a Milano dalla Valtellina per morire in fabbrica. Un rapporto che ricade sul figlio, il quale risulta sempre più gradualmente ferito dall’ansia di conoscere la verità, arrivando per questa via a ricostruire, non solo nel padre, ma anche nei suoi compagni, il dolore fisico e morale della fabbrica. Il tutto raccontato con uno stile asciutto e tagliente, ma di forte impatto emotivo, che procede lungo il filo di una dolorosa elegia".
Con il premio a La fabbrica del panico di Stefano Valenti , romanzo che racconta la storia dei nostri compagni, del nostro Comitato con le sue lotte e le sofferenze, la Confindustria Veneto cerca di salvare la sua coscienza sporca e le mani grondanti di sangue operaio, ma non ci riesce.
In occasione della premiazione abbiamo inviato le nostre felicitazioni a Stefano Valenti con un breve commento che lui cercherà di leggere dal palco che riportiamo in allegato.
Caro Stefano, ti inviamo queste quattro righe di commento al Premio Campiello e le nostre felicitazioni.
Fatica, sudore, sfruttamento, rischi per la salute e la vita ogni giorno, questo il prezzo pagato dagli operai in cambio di un salario miserabile.
Paura, panico, malattia, morte, rabbia, auto organizzazione senza delegare ad altri i propri diritti e interessi.
Lotta, gioia, rapporti umani solidali e una grande sete di giustizia per i nostri compagni vittime dell’amianto, sacrificati sull’altare del profitto da imprenditori senza scrupoli che hanno mandato coscientemente a morte centinaia di migliaia di operai.
Una società che mette il profitto prima degli esseri umani, che considera normale che più di mille lavoratori ogni anno muoiano per infortuni sul lavoro e che altre migliaia siano uccise dalle malattie professionali, continuando a inquinare gravemente l’ambiente e la natura è una società barbara senza futuro. 
 Una volta tanto una storia operaia vera, quella dei lavoratori della Breda Fucine di Sesto San Giovanni e del nostro comitato contro l’amianto, che tu hai raccontato così bene, viene premiata.
Il Premio Campiello assegnato al tuo romanzo La fabbrica del panico, è un riconoscimento anche per noi e per tutti coloro che continuano a lottare senza arrendersi per i propri diritti e per la giustizia sociale. 
Ciao, un abbraccio da tutti noi.
Per il Comitato per la Difesa della Salute nei Luoghi di Lavoro e nel Territorio, 
 Il presidente
Michele Michelino (il Cesare del tuo romanzo)
Sesto San Giovanni, 12 settembre 2014

Beautiful and brave warriors are dying every day thanks to asbestos and senseless greed.  <3
My thoughts and heart is with the families left behind to pick up the pieces.   These beautiful and brave warriors should still be with their families and friends.   It is so so wrong!

Asbestos victims don’t die by instalments: James Hardie shouldn’t compensate by instalments


ADFA Media Release: Asbestos victims don’t die by instalments: James Hardie shouldn’t compensate by instalments

15 Sept 2014 – Sydney, NSW
Media release – Asbestos Diseases Foundation of Australia (ADFA), Barry Robson, President
Asbestos victims don’t die by instalments: James Hardie shouldn’t compensate by instalments
Asbestos groups are outraged by the announcement that the James Hardie asbestos compensation fund will seek approval from the Supreme Court to pay victims by instalments following a forecast shortfall of funds within three years.
The Asbestos Diseases Foundation of Australia said the move was a slap in the face to victims, especially as James Hardie had recently found $500 million to pay in dividends to shareholders and given pay rises to top executives, with CEO Louis Gries now earning $11 million a year.
ADFA president Barry Robson said the reason for the funding shortfall was because the number of Australians dying from James Hardie asbestos products was still climbing, with a particular spike in the number of cases of mesothelioma, an incurable cancer caused by asbestos.
“Asbestos victims don’t die in instalments, they don’t lose the ability work or care for themselves in instalments, yet James Hardie wants to see them compensated in that way,” Mr Robson said.
“James Hardie spent decades knowingly selling these deadly products which to this day are still found in millions of homes and workplaces around Australia, leading to a growing number of home renovators and others in the community being exposed to asbestos fibres.
“The death toll from those products is still rising, with more Australians now dying each year from asbestos related diseases than the total number who die on the roads.
“These diseases are particularly devastating and require costly medical care.”
Mr Robson said the rise in the number of Australian’s being diagnosed with asbestos related diseases made any potential funding shortfall even more concerning.
“We will be working with the NSW Government, unions, community organisations and other supporters — just as we did ten years ago — to fight for justice for every single victim of James Hardie asbestos products,” he said.
“If James Hardie can find half a billion dollars to hand over to shareholders, and $11 million a year just for their CEO, surely they have an obligation to ensure every victim of their deadly asbestos products is properly compensated.”
For media comment please call ADFA President Barry Robson on 0407 235 685
Barry Robson, Charter GBAN Member, Australia

Australia’s 1st International Conference on Asbestos Awareness and Management

I am so excited to announce that the Asbestos Safety and Eradication Agency is hosting the inaugural International Conference on Asbestos Awareness and Management 2014 in Melbourne, Australia, to be held on 16 to 18 Nov 2014. Further details and registration on the website.
As the Global Ban Asbestos Network Director for Australia and a Mesothelioma Warrior, the 1st International Asbestos Conference in Australia is monumentally important to me.
Since my father, Norman Heritage, was diagnosed with mesothelioma in 1985 at the age of 54, I have believed in raising awareness and helping in unity to help ban asbestos on a global scale.
Barry and Lou
ADFA members, Hon Lisa Singh, Lou Williams, Kat Burge AVA member
Through my blog, Asbestos – Living with Mesothelioma in Australia, I have been passionate and dedicated in raising asbestos awareness, advocacy and support both in Australia and globally.
When I get asked my secret for surviving with mesothelioma. I always say “follow your dreams.”
This International Asbestos Conference in Australia is the realisation of a dream for me. I have been fighting to raise awareness of asbestos disease for many, many years now. I am very grateful to the Australian government for taking the lead on such an important issue.  Australia has one of the highest incidence rates of mesothelioma in the world. (Leigh & Driscoll 2002)
So, to all my Meso Warrior friends: Keep following your dreams! And keep living in the 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 itself. Let the universe take care of that for you!
See you all in Australia in November!
Lou Williams, GBAN Australian National Director

Wednesday, September 10, 2014

Living in between treatments with mesothelioma! Surprise pirate birthday party!!

I have been secretly planning a surprise pirate birthday party for my husband Keith for about 2 months of serious planning and I am pleased to say that it was a total surprise on the day for Keith!  I love surprising him - mind you I would hate to be surprised myself!!!  20 years ago while living in Brussels, Belgium I successfully surprised Keith for his birthday - we had over 20 expat nationalities and each one brought a plate of food.  I remember taking a picture of Australia to the local Flemish cake shop in Sterrebeek where we lived at the time and in broken Flemish explaining that I wanted a map of Australia cake.  When I picked it up it looked more like an upside down map of Belgium!!

10 years later I surprised Keith with a Formula 1 Motor racing Grand Prix party just after we had moved into where we now live.  It was a fabulous party.

This one was great too!  The sun put on a wonderful display of nonstop sunshine! Saturday Keith thought that we were going out to dinner with friends in Launceston to celebrate his special birthday that evening.  Midday his brother arrived (he had flown down from Queensland) .... then 2pm everyone arrived dressed as pirates.   Keith was transformed into a pirate as well.
Drinks/nibblies/bbq kebabs on the deck that was decked out like a pirate boat ... pirate themed cake and lots of vino/laughter and sunshine until about 6pm when everyone went home.  6 here overnight and by 7pm we were all totally exhausted!  A really fabulous party and one that I pulled off as a total surprise again!

A wonderful weekend, by Monday night we were exhausted however very happy.  Yesterday walking on the beach with Keith I felt very relaxed and virtually free of pain and breathing was great compared to when we arrived here a few weeks ago.  This morning a different story - my tummy was quite tight with fluid and my arm nagging sharp pain .... and I felt a bit tired, however I have come good tonight and tomorrow is a new day!

Thinking about those warriors who are having treatment, not feeling too well at the moment and/or waiting for results.  I send love, strength and smiles your way.

Tuesday, September 2, 2014

Enjoying Tasmania and a birthday celebration.

The last 2 days have been just magical for both of us!  Yesterday was the first day that we have not had sun - it was a wet and cold day.  We decided to go for a short drive to Beauty Point (20 mins away) on the Tamar River.   A pitstop at Platypus World to have a coffee/green tea and say hello to friends there.   We also went on the tour of the platypus and echnida house where our wonderful tour guide Dan gave us a very comprehensive and informative talk while showing us the platypus and echidnas in daylight and undercover.  We watched both feeding and playing.   Highly recommended if you ever get to Tasmania.

The Platypus

Ornithorhynchus anatinus

Beautiful, majestic, mysterious and darn right odd are possible descriptions of the platypus. Here is an animal whose general structure puts it somewhere on a level with reptiles and birds and at the same time suggests a closer relationship to those animals we call mammals which have fur coats, four legs and produce milk to feed their babies.
The platypus is a highly specialised animal. What specialised adaptations has nature grafted onto this aquatic creature? It certainly has not developed the streamlines of dolphins or seals but has enormous, webbed front feet and a flattened tail. It has a quiet and leisurely way of swimming which like the rest of the animal has to be seen to be believed.
On land, the platypus is shuffling and sinuous. The feet are very useful and can be used for a variety of purposes, apart from walking on, including grasping an enemy in order to inject him with venom, mating, preening, and digging. Only at Platypus House are you likely to see any of these activities because our animals are active throughout the day.
Of course the platypus does not have a duck’s beak! You would only think this to be the case if you were to look at photographs or drawings. The snout or bill of a platypus is soft, moist, flexible and extremely sensitive. Furthermore, there are no sensory whiskers like those seen on a dog or cat. Inside the mouth there are no teeth once the animal is a few months old – the teeth fall out and are replaced by horny plates with which to grind the food and ridges to hold onto slippery morsels. After watching the platypuses at Platypus House you will soon realize just how clever the animals are at catching their prey; even large freshwater crayfish can be quickly disposed of.

We actually have a wild echnida that lives at our place - every now and again he runs up our front veranda and scuttles into the garden then down to the dam area where he hides and hunts for ants.

Today is Keith's birthday.  We have had the best day and the nicest part of it is that I am still here to celebrate with him in style!   Morning tea at Grindelwald (Swiss Village) and a walk around Lake Louise then lunch at the beautiful Gorge Restaurant, Cataract Gorge, Launceston overlooking the gorge, suspension bridge and chairlift.