Thursday, August 28, 2014

Feeling relaxed in between chemotherapy

Still relaxing in beautiful Tasmania, Australia and feeling very relaxed.   It is now 2 weeks since leaving the mainland via car overnight ferry for Tasmania - a week into my chemotherapy regime.   Yesterday was 3 weeks since my last dose of chemotherapy drugs and the date I was supposed to have another dose, however I have delayed it for another 2 weeks as I believe being here is very much like a retreat and enhances both my health and wellbeing.   I have for 2 weeks had a very bad back blade bone pain that has been worse at night, however it is now appearing to ease giving me a few solid hours of sleep rather than an hour or two.

The days have been just beautiful - warmish and very sunny encouraging lovely walks along the beach.   Greens Beach is so peaceful, calm seas and the sand is very still.   You can walk out to sea for a long way before even getting your feet covered with water - it is a perfect beach for kids!   Kids are here in the summer and school holidays, other times there are just oldies like us who like to wander along the beach on their own, as a couple or with their dog.  We are here in the quiet season and it is rare to see more than about 3 to 4 persons on the beach at one time.   Our beach walk starts at the lovely coloured boat sheds and we walk 1.5 kms to the point near Kelso where the sea and river meet.   Across from Greens Beach is Lowhead and the lighthouse that is very visible from the beach and our shack.

I love lying upstairs on the bed late afternoon listening to the sound of the waves, looking out to sea and across to the lighthouse and occasionally seeing a fishing boat, container ship or sailing ship in the distance.  Very calming and peaceful.

Today we drove down to Grindelweld, the beautiful Swiss Village where we had morning coffee/green tea at an outdoor cafe then walked around Lake Louise.   Shopping for supplies at nearby Legana shopping centre before coming home.   We went for a beach walk while the sun was shining.

The 2013 Australian Mesothelioma Registry report has just been released.  The report is evolving and becoming more comprehensive. The statistics are not great however with research advancement these will improve with time.

When we decided to take time out from this chemo regime and come over here for a few weeks I was not well at all and my oncologist said to me 'quality and life enhancing is important over quantity'.   I do totally agree, however I know for me, getting away from the day to day grind of endless medical appointments, chemotherapy that consumes every waking minute helps me to focus again on me and get my immune system stronger to cope with what meso throws at me.

For all those warriors around the world who are doing it tough - my heart goes out to you.   I am sending you love, hope and strength.

Thursday, August 21, 2014

Asbestos Safety and Eradication Agency - International Conference Asbestos Awareness and Management Nov 2014

I am so excited to announce the Asbestos Safety and Eradication Agency are hosting the inaugural International Conference on Asbestos Awareness and Management 2014 in Melbourne, Australia will be held 16 to 18 Nov 2014. Further details and registration on the website.

16th - 18th November, 2014
Crown Melbourne,
Southbank, Victoria

The Asbestos Safety and Eradication Agency is holding the inaugural International Conference on Asbestos Awareness and Management 2014.
November is National Asbestos Awareness Month and the agency has organised a conference featuring well renowned international experts in asbestos management, health, advocacy and governance to challenge delegates into thinking how Australia can drive change in our region and globally when it comes to the continued manufacturing and distribution of asbestos containing materials.
The conference will start with a welcome reception on Sunday evening 16th November and will run the 2 full days Monday 17th and Tuesday 18th November 2014 with a conference dinner on the Monday evening all within the confines of the Crown hotel and conference complex on Melbourne’s Southbank.
This event will provide a stimulating and entertaining environment for delegates and stakeholders to discuss the big issues facing them in raising awareness about the dangers of asbestos in our work and domestic environment and how it can be managed into the future.
This event will also highlight the role of the agency in advocating change and the need for an independent body to deliver change on the ground, in the Australian and international community.

About the agency

The Asbestos Safety and Eradication Agency was established on 1 July 2013 to provide a national focus on asbestos issues, which go beyond workplace safety to encompass environmental and public health issues. The independent agency will ensure asbestos issues receive the attention and focus needed to drive change across all levels of government.

This will be a wonderful conference where knowledge, awareness and advocacy on a global scale will come together in unity.

There is no safe asbestos - asbestos kills!

The Economist named #Melbourne the world's most liveable city for the fourth year in a row. The survey rated healthcare, education, stability, culture and environment and infrastructure. Adelaide, Sydney and Perth also made the top 10. Check out the entire list here
Photo: The Economist named #Melbourne the world's most liveable city for the fourth year in a row.The survey rated healthcare, education, stability, culture and environment and infrastructure.  Adelaide, Sydney and Perth also made the top 10. Check out the entire list here

Wednesday, August 20, 2014

Enjoying Tasmania's slower pace

We have been here 1 week today and are settled into 'go slow pace of life'!  Monday we drove 59 kms down to Launceston, had breakfast at our favourite cafe Le Cafe - a beautiful French cafe overlooking a lovely tree lined park run by our good friend.  She is a very talented artist and displays her paintings in the cafe.  Next quick shopping then home via Georgetown - the oldest town in Australia.  In the car my breathing was a bit strained however by mid afternoon I had come good and once back here we went for a walk on the beach - a deserted beach as we were the only 2 persons on the beach.

The last few nights I have had back shoulder blade bone pain coming down my arm when lying down in bed - quite painful and not sure where it is coming from, however other than that I am fine!

Yesterday we had a long walk along the beach and again we were the only persons on the beach.  Late afternoon resting upstairs on the bed reading and looking out to sea watching the waves, the lighthouse flashing and the sun set.  All very peaceful, relaxing and good for the soul.

Today we drove 19 kms to Beauty Point (home of Platypus and Sea horse World) where we caught up with friends, had a coffee/green tea and home for another walk along the beach.

Friday we are house-sitting for the weekend in Launceston so will make the most of walking up Cataract Gorge, going to Evandale Market on Sunday and shopping of course!

My heart is with those brave warriors going through treatment and for those who are getting/have results and being told their life is on hold with further treatments for the moment.

 Green's Beach Tasmania - friends walking their beautiful dogs along the water's edge.

 Green's Beach and a view of the homes behind me.

 Beauty Point, Tasmania

 Green's Beach HUGS IN UNITY

Lunch at Georgetown, Tasmania

Saturday, August 16, 2014

Silence serenity retreat in Tasmania respite from chemotherapy

We came over to Tasmania in the car ferry 'Spirit of Tasmania' from Melbourne to Devonport, Tasmania on an overnight crossing.   A very calm sailing with only 300 passengers on board instead of close to 700 making it a much more pleasant journey.  We disembarked with our car just prior to 7am and after a breakfast stop in a little bakery cafe near the wharf we had an hour's drive through rainforest and hills to our destination at Green's Beach - a beautiful little cove with about 100 homes and a very lovely beach.   We had a walk along the beach, drink at the little cafe/shop and then a good sleep as I did not sleep much on the ferry.

Yesterday we drove closer to Launceston to Grindelweld - the Swiss village and Lake Louise where we had another lovely walk.

Today another walk on the beach while the sun was shining and a rest at home as my breathing was a bit tight.

Monday, August 11, 2014

Day 7 of chemo and starting to feel sane!

Today is day 7 of chemo - I am slowly starting to feel sane and regain some much needed energy!

The last few days I have had intense spinal back pain, tightness in the chest and breathing difficulties after minimal activity.  Yesterday for example, slight exertion would see me reaching for Panadol Osteo capsules (I am determined to keep the morphine based Kapanol in storage for as long as I can), a heat pack to put on my spine and alternate with my tummy/chest area lying flat for a little while with of course, Charlie by my side (Charlie is my beautiful siamese cat).  Having no steroids with this chemo has meant that I am able to sleep for most of the night, waking up every few hours but at least being able to go back to sleep which never happens while having the steroids.

My appetite is not good at the moment however in a few days it will come good.  I am missing my antioxidant green tea as my taste buds are simply not there yet!

Sunday afternoon we were invited to our dear friends home who live at Mt Macedon - where the air is beautiful and fresh, the gardens Edna Walling designed and just so lovely to walk around.  It was their birthday afternoon spent with friends - altogether about 10 were there making it so nice to enjoy each other's company where the vino flowed freely, good conversation and beautiful food including paella to die for and an orange cake out of this world!   Unfortunately I spent most of my time lying on the sofa by the open fireplace with a hot water bottle on my spine taking in the wonderful and beautiful energy in the room thinking just how lucky I am to be sharing in this special day.

We are heading over to Tasmania (Tassie) tomorrow night (Weds) on the car overnight ferry that takes 12 hours.   Charlie will be well taken care of at home thanks to our wonderful neighbours and good friends too, and wonderful family as well.  We have family who are house-sitting our home so Charlie will be okay and not miss us too much.  Heading back to Tassie is a retreat for us both - beautiful wilderness walks on the beach, walking in the national park and of course frequenting cafes and Launceston with the beautiful Cataract Gorge.  I am delaying chemo once again - as my oncologist and us (Keith and myself) agreed - it is quality over quantity.   Alan my oncologist also said it is life enhancing!  I know I will come back refreshed with more energy and vitality to continue living with mesothelioma.  In the meantime I will have my laptop and mobile phone so I will still be able to keep in touch with the meso community and raising awareness etc.

On a positive note - it is wonderful news that Mavis Nye in UK - a brave meso warrior has had good news after a scan while being on the MK375 PDL1 trial drug.  I am just so pleased for Mavis and to another warrior Alistair who has received similar results while on the same trial.
Unfortunately I am not a candidate for this trial having both peritoneal and pleural mesothelioma plus extensive surgery and treatments over the years.  However I have every faith in this current chemo reducing further fluid for me.

Wednesday, August 6, 2014

Chemo yesterday, Utube presentation ADAO and on Managing C'tee World Asbestos Congress 2015 Pakistan.

The results of my recent scan were a bit confusing when the report came back.  After seeing my oncologist yesterday for further chemotherapy we had a look at the scans and reports of both last week and the previous one in April.  Basically not a lot of change in the pleura of both lungs, in other words I have pleural meso big time however not much change from April's scan that the radiologist felt he needed to write down on the report.  There is quite a bit of thickening that is of concern.
Interview with Lou Williams, Mesothelioma Patient and 2014 ADAO Alan Reinstein Honoree

The ADAO August eNewsletter is HOT off the press! Lots of news about the XX World Congress, community share your stories, Mesothelioma Awareness Day Concert “Jammin for Awareness”, Iatp Asbestos Skydive event, Video Interview with Lou Williams, and more. Others mentioned in the August eNewsletter are: Jordan Zevon Jim Te Water Naude Yvonne Waterman Jill Vaughn Lisa Rahe Thompson XX World Congress on Safety and Health at Work 2014 - Global Forum for Prevention Heather Nash Yvonne Handshoe Hall Carrie McNamara Alessandro Pugno Sandra Neuenschwander Asbestos Hunter Jennifer Miller Syed Mezab Ahmed Special thanks to Herman Hamilton for all of his great help with the eNewsletter.

(A great team effort thanks to Linda Reinstein, Herman Hamilton and their team of helpers who put together this wonderful monthly newsletter for ADAO). 

Another great honour for me
is to be included in the Managing Committee for World Asbestos Congress 2015 in Pakistan as Mrs Lou Williams, Social Activist, Press Secretary Australia
More then 100 Countries Participation
More then 100 Countries Participation

I had my chemotherapy yesterday in Melbourne, this time a trial without steroids, so far so good as other times no way could I be typing on the computer like I am this morning!   I did have 6 hrs sleep and woke up with a tightness in my chest, so took my meds and got up - actually made some revolting porridge/oats to eat.  Yes I am not a fan however I know they will help to settle my tummy in regards to nausea and the anti nausea meds that are starting to kick in.

We have lost some beautiful mesothelioma warriors this week and some quite sudden.  With mesothelioma it can be like a waterfall, one minute we are drifting along just nicely to the waterfall's edge then bang we are going over it very fast with no control.

To those mesothelioma warriors who are doing it tough with treatment at the moment my heart goes out to you - hang in there there is light at the end of the tunnel.  Those who are waiting for results - I am holding your hand for good results!