Thursday, January 30, 2014

LungLeavin' Day Heather Von St. James 2 February 2014

Please take a moment to open the link below and read this brave warrior Heather Von St. James story and inspiration for LungLeavin' Day (2 Feb 2014) wonderful and very emotional day with very special meaning.  Below is the email that I received from Heather's lovely husband Cameron.
My name is Cameron Von St. James and I am reaching out to you to share something very special to me. I found your blog while searching for those who have overcome obstacles in life. I noticed that openly acknowledge it and I was wondering if you’d be willing to help me with a cause that means a lot to me!
Eight years ago, my wife Heather was diagnosed with mesothelioma.  She had just given birth to our daughter Lily, and was only given 15 months to live.  After a life saving surgery that included the removal of her left lung, LungLeavin’ Day was born.  This will be the 8th year that we celebrate!
The purpose of LungLeavin’ Day is to encourage others to face their fears!  Each year, we gather around a fire in our backyard with our friends and family, write our biggest fears on a plate and smash them into the fire.  We celebrate for those who are no longer with us, for those who continue to fight, for those who are currently going through a tough time in their life, and most importantly, we celebrate life! 
This year, we are asking bloggers to participate and spread the word about LungLeavin’ Day.  We created an interactive page that tells the full story of our special day here: 
We hope you will check it out and share it on your blog.  It would mean so much to Heather and I!
Thank you so much,
Heather's Family

Tribute to a beautiful warrior Jan Egerton and living life with mesothelioma

We are currently in the process of updating to a new computer as our old one has given up the ghost - and is now so so slow to upload any basic form of keystrokes to the point that I could put an axe through it!    So shortly I will be back up and running!

We lost a beautiful, courageous and very brave warrior in the UK a few days ago - Jan Egerton.   Over the last few years when either of us had been going thru rough patches including cancer treatments we supported each other.   Now that she is not here, I do feel a loss as other warriors can understand.    Having this cancer we are unique in the fact that it is such an aggressive one and limited 'working' treatments so much so that we have to really track our own journey with the help of the medical field and also natural therapies too, plus the power of the mind is a wonderful tool to have as well.  My heart goes out to Jan's husband Gary - her soul mate and now he is left behind thanks to deadly asbestos greed to pick up the pieces without his beautiful Jan.   RIP my angel.

Last weekend was a long 3 day 'holiday' period to celebrate Australia Day on 26 Jan.   I caught the train to Bendigo, Victoria and stayed 2 days with my brother and his wife.   My brother helped to put together my speech via video for the inaugural 1 Feb 2014 Ban Asbestos Conference to be held in Pakistan.   I will post my speech after the conference is held next Sat 1 Feb.   It is a very exciting time for the global community to come together and join forces with Pakistan to convince their Government to ban asbestos totally from their country.   The power of social media and us global warriors feature in my speech.

My beautiful little grand-daughter Ruby and little step-grandson Hunter both started school and little step-great grandson Cody for the first time.   3 little ones on a life time journey of learning, education and fun.

Yesterday I caught the trains to Williamstown, Melbourne - met my sister in law for a chat/drink at a little cafĂ© there, then made my way to a family funeral near by.   My 91 year old aunt died - it was a really nice funeral as her life was live to the fullest until a few years ago when she sadly contracted dementia.   So catching up with long lost cousins that I hadn't seen for a few years was great and no doubt contact is now made again that will renew friendships and visits.   Thanks to the power of social media to keep in touch.    My aunt was able to live a natural life to the end.   We don't have that luxury - our path is already chosen to end earlier than normal thanks to asbestos greed!  In the mean time we live life in the moment and let the universe take care of the big picture.

My dear cousin who I see regularly said to me yesterday what are my plans for next Christmas - I replied ''I don't look that far ahead, I can't ..... I can plan and look forward to the next couple of months then I will assess the situation again'.

It is still very hot here and will be for the next week with temperatures to be in the mid 40s celcius.   As long as the wind stays dormant so that the threat of bush fires is not as strong I will be happy.   We had to get a truckload of water in yesterday as our tank had dried up.   $150 for a load of water!   Please rain soon as our garden/grass is so dry and brown.   What plants survive will do so ... .

Today I met up with Rod Smith/Karen Banton - part of our organisation and dear friends (Bernie Banton Foundation) for lunch and a meeting to discuss a few things.   Weather was perfect and the views where we had lunch were just the best sea views.

On that note I will close this blog tonight.   My heart is with all the beautiful warriors globally who are not well at the moment.

On the global front we are making a difference with a ban on asbestos that is gradually happening around the world - we need to keep focussed as we do not want our children and their children to be continually exposed to deadly asbestos fibres.

Wednesday, January 8, 2014

8 Jan 2014 Oncology visit

I had blood tests done on Monday 6 January, then this afternoon an appointment with my oncologist Allan Zimet for results and a checkup.   (My last visit was 6 weeks ago).   Blood tests were fine.
I mentioned to Allan that I have been experiencing a tightness/hardness in the tummy area.   He said to get up on the table and he will check the tummy area, with pressing he said it appeared to be okay .... and for me to 'monitor' it.

So another appointment was organised for mid March, unless I felt the need to make one earlier.   So Keith and myself can breathe again and continue to plan the few months knowing that I am okay!  This time last year my breathing/pain/tightening was getting worse and now 12 months later I am once again travelling well!  I wish with all my heart that this was the case with other brave mesothelioma warriors!   It does show that it can happen!   As I have said before, I believe accepting that I have this cancer and living with it is a big part of my ongoing positivity with living my life.   When something presents itself - I deal with it, then get on with life.   I have my ups and downs living with mesothelioma and at the moment I am on an up!!

We had a look at a car on the way home - as we are busy looking for another car to replace our one that was a write off in an accident on Friday 13 December 2013!   Keith is in his element looking on and the hunt is on again for the perfect car!   We need to find one soon as my brother kindly lent his twin cab utility to us to drive in the meantime.

I have been asked to speak/attend the inaugural Ban Asbestos Conference in Pakistan on behalf of Australia/Bernie Banton Foundation on 1 February.   Unfortunately I am unable to attend in person however I will do a video linkup prior to the conference.    It is indeed a huge honor to be asked and one that I am acknowledge with pride and an opportunity to get our message across for all the warriors around the world - there is no safe asbestos, asbestos kills.   We need a global ban and with this conference to be held in Pakistan it is another way of achieving this!

On our way home tonight we stopped in at our favourite Indian restaurant and had a meal and toasted with a glass of Mango Lassi to us and to all the warriors around the world!

On that note I am off to bed!

Sunday, January 5, 2014

Mad Hatter's High Tea Party with hats and bow ties! Market Sunday.

Keith and myself were invited yesterday to a Mad Hatter's High Tea Party providing that ladies wore a hat and the guys a bow tie!   We arrived at 1pm and were seated shortly after at our table of 10.   Only 2 ladies (I was one!) that had hats on, and Keith and 2 other guys wore bow ties that came off within a few minutes of sitting down as did our hats!   What a feast - both gluten free and normal food with unlimited tea/coffees and a glass of champagne.   The owner who is an accomplished pianist played his piano to requests while we and others in the restaurant enjoyed an afternoon of laughter, fun and music.

Tylden Harvester Cafe/Restaurant is an art deco building situated in Tylden a little country town halfway between Woodend and Daylesford, Victoria, Australia.

This morning we ventured down to our local market at Gisborne town centre.   It was very crowded so we quickly walked around then bought a few things including some lavender plants from my favourite stall holder - a little Italian lady Maria, who grows all her fruit/vege/plants herself.   She was diagnosed 12 years ago with breast cancer and is very well at the moment and keeping herself busy with her stall.

Then up to the Trading Post General Store/cafe/post office at Mount Macedon where we have a PO Box for our mail, so collected our mail and had a coffee/tea sitting outside chatting to friends/locals and looking at the various cars going past - we are looking for a car to replace our car that was a write off in an accident on Friday 13 December 2013!

Back home and very very windy here today so a good chance to catch up on some housework/decluttering and paperwork inside and leaving the outside chores for another day when the wind dies down.

We have just lost another brave warrior today - my heart goes out to his family and may he be at peace.

Tomorrow I will be having a blood test and then seeing my oncologist Allan Zimet on Weds for a checkup to see how I am doing.  

May this week bring some sunshine into our lives and a nice surprise!

Friday, January 3, 2014

Reflection on 2013 and hello to 2014!

We are all brave and beautiful warriors living with this deadly asbestos cancer.  Warriors through no fault of our own, we have been exposed to deadly asbestos fibres some time during our life time.  These fibres can stay dormant in the body and take up to 10 to 40 years before deadly asbestos cancer/mesothelioma is diagnosed or an asbestos related disease such as asbestosis or pleural plaques.

This candle is also for those brave and beautiful warriors who have lost their lives to this deadly cancer including my father who died in 1985 of pleural mesothelioma aged 54 years.  They put up a very brave fight while living with mesothelioma and eventually lost their battle.  We always will remember them as being brave beyond their life on earth.  They truly are warriors knowing their life was going to be cut short thanks to deadly asbestos and the pure greed of those who knew that asbestos was a deadly and dangerous substance.  So many innocent families are torn apart due to their loved one being diagnosed with an asbestos related illness.   When their loved one does die, they are left to pick up the pieces and 'carry on with life' no matter how hard it is for them having lost their family member knowing that their death could have been prevented if it weren't for the asbestos greed!

As for me - 2013 has been a year of highs and lows living with mesothelioma.   Knowing that my cancer was on the move and feeling like I was going to die due to breathlessness, pain and sheer exhaustion I went thru further chemotherapy treatment August to November 2013 and surprise surprise - I am feeling well again and living my life to the fullest!   Enjoying each day and making the most of it, planning what I am going to do in the next few months, raising asbestos awareness, education, advocacy and support on a global scale and being part of the Bernie Banton Foundation as Asbestos Information, Awareness and Support officer.

In December 2013 Keith and myself hosted at least 4 very special and important events at our home.  The next day I would feel slightly lol exhausted however so so glad to be here and being able to do them as it is what I love doing - making others feel very loved and special!  2 December we hosted the Bernie Banton Foundation Christmas luncheon with older ADSVIC (Asbestos Diseases Victoria Organisation) members/friends attending making it a very very special day.   There is a very special and loving vibe in the room where I am sure, brave warriors who have died are with us laughing and sharing the Christmas festivities including a surprise visit from Santa!  The day was very hot outside although inside was a nice cool temperature.  

My side of the family on 22 Dec we had Christmas lunch here - altogether 16 in attendance.  So nice to be able to have it at our place in 2013 and such a beautiful warm and sunny day weather wise.

In between we had a couple of Xmas informal dinner parties here that we were so glad to return some lovely hospitality to others who had done the same for us many times when I had not felt like cooking being so fatigued at times during the year.

New Year's eve we again had a party here - we were able to sit outside watching the sun set while enjoying a glass of vino, good company and afterwards inside for a light meal then a midnight toast to 2014 and a big toast for Keith and myself that we made it!   Every new year's eve my sister in law and also my nice neighbour good friend toast to this time next year being here and celebrating 2014!   That is a very very important toast for me, for Keith, family and also for all the other brave warriors around the world!

I will post further later today about being asked to speak at the first inaugural Ban Asbestos Conference in Pakistan.

Until then I wish everyone a very happy and beautiful 2014!