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
Email: eradicateasbestos@gmail.com