Thursday, April 28, 2016

International Workers Memorial Day 28 April 2016 REMEMBER THE DEAD - FIGHT FOR THE LIVING!

Today is International Workers Memorial Day where we remember the dead and fight for the living!  Across the globe services are being held to remember those who have lost their lives through occupational deaths, diseases and injuries.  A few are highlighted below.

Memorial Day Brisbane, Queensland

ADFA (Asbestos Diseases Foundation Australia) at Sydney International Day of Mourning for workers who have been injured or killed at work. 

International Workers Memorial Day, Adelaide

Asbestos Disease Awareness Organisation (ADAO) America

Day to remember the dead and fight for the rights that they and their family members. We invite everyone to Brasilia/Brazil.

Union Aid Abroad (APHEDA) We remember. We fight. Asbestos. Not here. Not anywhere.
More info about events around the world - excellent link.
Unions join international call for protecting workers’ health and safety in Argentina - See more at:

For this 28th April, Italian trade union confederations CGIL, CISL and UIL will be running unitary actions to commemorate the victims of occupational accidents and diseases. The call for a national plan to free Italy from asbestos will be a key feature of the actions today. - See more at:

The United States trade union confederation AFL-CIO launched its annual Death on the Job Report, showing the raising toll of occupational deaths, diseases and injuries for US workers. The report is available on the AFL-CIO website, along with infographics of highlights from the report.
In addition, nearly 100 events are being held around the US to remember workers killed and injured on the job and to renew the fight for safe jobs. 
- See more at:

Brussels, 28 April 2016 (ITUC Online): As ceremonies around the world take place on the International Commemoration Day for Dead and Injured Workers, the ITUC has warned negligent employers of the consequences of putting workers’ lives at risk. Worldwide, one worker dies every 15 seconds due to occupational injury or illness.
Sharan Burrow, ITUC General Secretary, said “Over 2 million workers die needlessly every year because their workplaces are dusty, dirty and dangerous. The risks are as obvious as they are preventable, whether they are falls from height, crippling workloads or chemical exposure. Every single death represents an employer’s failure to act.”
- See more at:

There are over 2.3 million work-related deaths worldwide every year, over 6,000 every day or one every 15 seconds.
An estimated 660,000 workers die each year from occupational cancers, or over 1 every minute.
- See more at:

Sunday, April 24, 2016

Lou's living hell and back with Mesothelioma!

I was eventually diagnosed in 2003 with peritoneal mesothelioma then in 2009 with pleura mesothelioma.  Unfortunately the longer that you live with mesothelioma, the more side effects kick in with some being very severe and causing other hurdles in life to deal with.

I was brought back to life in April 2015 thanks to Keytruda kick starting my immune system to fight tumours/fluid and thankfully it did for 11.5 months and kept me alive with excellent quality of life.  Prior to Keytruda my body was shutting down, on 24/7 oxygen, morphine for chronic pain, rapid weight loss .. 42 kilos and needing constant blood transfusions to stay alive.

Rushed to hospital in a coma
Thanks to many years of chemo and the steroid Dexamethasone I developed a severe reaction to my chemotherapy that I had on 18 March 2016.  My body started to shut down, weight loss and I went into a coma (similar to a diabetic type 1 coma - Diabetic ketoacidosis is a potentially life-threatening complication in people with diabetes mellitus. It happens predominantly in those with type 1 diabetes DKA results from a shortage of insulin; in response the body switches to burning fatty acids and producing acidic ketone bodies that cause most of the symptoms and complications.

Keith found me on the floor near the bathroom at 7am Weds 23 March 2016 in a coma mumbling indistinct slight murmuring and I had lost control of all body fluids.  He turned my head, lifted me on to the bed (these were the instructions over the phone from the ambulance who arrived within 30 minutes.  One ambulance attendant stayed with me in the back of ambulance with oxygen and kept saying hang in there Louise.  According to them another hour and it was goodbye world.  Emergency department  at John Fawkner hospital, Melbourne worked on me for over 24 hrs before I was transferred to the intensive care ward.  It was touch and go if I would make it AND I DID, then began my recovery to get home.  My oncologist Allan Zimet said it was the dexamethasone in the recent chemo that triggered all of this and it was thanks to Keytruda that some remained in my body to fight enough to wake up from this nightmare.   I remained in hospital for 2 weeks relearning how to eat, walk, shower and regain strength to return home with Keith.  As a result of the severe reaction to Dexamethasone, my pancreas no longer works so I am now a diabetic type 1 who needs to inject insulin every day.

(My 8 year old grand-daughter Ruby made this card for me while in the hospital.  She said it is Nana being strong on the mountain!  It gave me the strength to be strong and push myself that much harder while in there.)

This is always my motto!

The second week while in hospital I walked over to day chemo ward and visited 2 very special staff members who have been with me on my journey since 2003.

My beautiful and dear friend Sue drove 9 hours from Pambula, NSW to visit me on the weekend that I escaped from the hospital!

My dear friend Julie Stafford came to see me in the hospital bringing beautiful foods for me to enjoy.

For all the Meso Warriors around the world with a girl called Lou Williams on your minds. A beautiful morning spent with our girl. Lou reminds us all about the preciousness of the infinitesimal moments. What a treasure. What an inspiration. What a blessing to know and love her. Huge hugs Lou. For always. Julie

A follow up visit to see Allan, my bloods were way down in hospital a blood transfusion and further chemotherapy without the steroid Dexamethasone as I was very anaemic and haemoglobin way down.  I have since had further chemotherapy last week as my bloods were really good.  I have slowly found my way back to good health since leaving the hospital.  No more blurred vision, and my weight and appetite has returned.

No keytruda as my lifeline anymore, however I will never never give up.  After this chemotherapy regime, Keytruda is again a possibility for me.  It is thanks to Keytruda that I am still alive and back living with quality of life and NO PAIN!

Thank you for your love and support and hope U didn't mind me leaning on U all!  So many 1,000s of well wishes from around the world and with the love of my family and friends I pulled through from my coma and now I am ready to continue my support for others living with mesothelioma and their loved ones, to be a voice for those who have lost their life to deadly mesothelioma and their loved ones and to raise awareness and education on the deadly dangers of asbestos on a global scale in unity.

On a lighter note I recently celebrated another milestone - my birthday.  We celebrated with 30 family members last Sunday at our home, then Keith and I spent 4 days at Barwon Heads, Victoria relaxing, unwinding and getting over side effects of recent chemotherapy!

We have lost so many beautiful global warriors to mesothelioma over the last few weeks.  Mesothelioma is a cruel, brutal cancer and asbestos greed is the cause of it!  We will continue to push for a worldwide ban on asbestos!

Lou Williams
Social Media Voice (ADFA) Asbestos Diseases Foundation Australia
Australian National Director (GBAN) Global Ban Asbestos Network

Wednesday, April 6, 2016

Trevor Grant, Mesothelioma warrior tells his story How Keytruda gave me back my life!

Petition update

HOW KEYTRUDA GAVE ME BACK MY LIFE...Trevor Grant, 64 yrs, Melbourne, Victoria, Australia

Lou (Louise) Williams
7 Apr 2016 — I have come to know Trevor through his diagnosis of pleural mesothelioma in March 2015. Recently he shared his story on ABC 7.30pm Report on Television and ABC website.
Hi Lou,
I have mesothelioma and I'm writing to let you know I've been following for some time your admirable fight to get Keytruda on the PBS, along with your own personal situation. I have been on Keytruda since last November and it has made a huge difference to me. I'm also happy for you to use the following information.
Best wishes, Trevor Grant
(We have spoken at length via phone and plan to meet up soon).
Trevor's story: Three weeks after my diagnosis I began chemotherapy (cisplatin/pemeltrexed). I had six sessions -- one every three weeks -- over 18 weeks. Although my relative fitness helped me get through the first three sessions, I struggled with the final three. I was pretty debilitated towards the end and needed a blood transfusion to get through the final treatment. I had also had a lot of pain in my chest and right arm. I couldn't walk more than 100 metres without the pain kicking in. I was also on strong pain medication.
The chemo did its job. My tumour shrank but the pain persisted. Then two months later the tumour had grown back and the pain was as bad as ever.

This is when Keytruda came into my life. After one session the pain had subsided, and by two, I'd taken myself off all pain medication. Suddenly I was able to walk as far as I liked. After my sixth session, a scan showed that my tumour had shrunk quite significantly. I've now had seven sessions and I'm living a fit and healthy life. I have no no side-effects. I do the gardening, walk for up to two hours a day -- the dog is always more buggered than me -- and I swim when I'm not walking.

When I was doing chemotherapy I lived in a dressing gown and was never far away from the toilet bowl, or a plastic bucket. I couldn't walk more than 100 metres without pain and struggled to go anywhere. In other words I was alive but I had no life. Keytruda has given me back my life. Whatever happens in the future, I've been able to spend the past five months living normally. That's already a huge bonus.

The drawback is that, because Keytruda is not on the PBS for mesothelioma, I have to pay $7000 per treatment, although I was able to get three free ones under a cost-share program. But that's it for the freebies. To stay alive I will have to pay as much as $120,000 a year. I find this grossly unfair, given that the disease I have is due to corporate greed and government neglect. And what's worse is that hundreds of people with mesothelioma simply can't afford it. I'm lucky that I have a pay-out from my court case to allow me to access it.

Thankfully melanoma sufferers are able to access Keytruda on the PBS, and so many are doing well. ( I know. I sit next to them at the day oncology ward. The difference is that they pay about $40 for the same treatment that costs me $7000. It seems pretty unfair to me). It's time mesothelioma and other cancer sufferers were afforded the same rights.

Please continue to sign my petition to get Keytruda on our Australian PBS (Pharmaceutical Benefits Scheme) for Mesothelioma and 31 other rare cancers it is showing promise with.

If you are having trouble copyng the above link to open the petition please go on to
Search: Keytruda Mesothelioma PBS Lou Williams

Lou's email

Another blog coming within next few days and an update on what has been happening in my life since my last blog.