My story and diagnosis

HELLO WORLD!

My thanks to my Husband, Gerry, my loving family and many friends who supported me and kept the faith during my illness.  As well, I thank all my China friends and medical Doctors and hospital staff.

I always thought I would write a best seller, a great psychological thriller, but as it happens, my subject matter is about the Beast, an insidious killer lurking within many people, more scary than any fiction I could have dreamt up.

It is said that life is a journey – here is part of my journey.

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.”  Mark Twain

 

I grew up in Adelaide, South Australia, the eldest of two children, to working class parents. From the time I was a small child, our family would go to a country beach-side collection of holiday ‘shacks’ about 90 minutes drive from the city.  Initially we would camp, then my Parents purchased an allotment, and began to build a shack built of corrugated iron.  Then my Father decided he liked the look of one of the other houses, which was clad in asbestos.  Whilst he cut, sawed, drilled and hammered into the asbestos sheets, little did he know that it would impact my life enormously.  (It is assumed this was the source of my exposure)

Life goes on, and I married had three great children who were, and still are, the joy of my life.  A marriage break up, later followed by retirement from work.  I remarried Gerry whilst we were living in Queensland for 9 years.  Later on, we got to do a lot of travelling around the sights of the world.

In October/November 2007 Gerry and I decided to go on a holiday to the South Island of New Zealand.  During this time I noticed that I was short of breath. Shortly after, I became unwell with severe back pain which would come mainly at night, with spasms of incredible pain.  I went to a local doctor as I felt that maybe I had a kidney stone, but was told that this was not the case.  With pain killers in hand, I returned home to Australia as planned.

DIAGNOSIS

Not long after this, I needed to see my local doctor as I was having trouble breathing.  It was ascertained that I had fluid in my left lung.  I was promptly dispatched via ambulance to a private hospital in Adelaide, where a substantial amount of fluid was removed from the lung, and after a number of tests was given the opinion that it was probably pleurisy, sent home and told to come back to the chest specialist in six weeks for a check-up.  Unfortunately, less than a week later, back to the doctor again with shortness of breath.  This time, after being admitted and having more fluid removed, was told that I should have biopsies taken from my lung to ascertain what they were dealing with.  The surgeon came to my bedside the night before the procedure, and casually asked if I had been in contact with asbestos, as in his opinion, I presented like a patient with mesothelioma.  Of course, my answer was that there had been no contact with asbestos, and did not even know what mesothelioma was.  The next morning, I had 6 biopsies taken from my lung, and the surgeon performed a pleuradesis, whereby talcum powder is put in between the outer layers of the lung, thus sticking them together like glue and further preventing fluid buildup.

After an agonising wait in hospital to find out what was wrong with me, on the 12th December 2007, was given the news that I had malignant pleural mesothelioma of the left lung, and that I probably had 4 to 5 months to live.  Wow!  Whist trying to absorb this, we awaited the visit by an oncologist, who said that all was not lost – I could have chemotherapy to increase my life expectancy, commencing the 2nd January 2008.

My husband and I spent the next few days trying to come to terms with this staggering turn of events, and a lot of tears were shed during this time.  My family was also devastated, relying on the internet to get the ‘facts’ on mesothelioma – not a good move, as they found the statistics on length of survival very confronting.  We decided that we would not wallow in our grief, but put the best foot forward and think positively.  We did this with the support of a great circle of family and friend along with a number of inspirational books about health, diet and the power of positive thinking.

TREATMENT BEGINS

On January 1 2008, due to the lobbying by the famous high profile Australian mesothelioma sufferer, Bernie Banton, the chemotherapy drug, Alimta (pemetrexed) was put on the Pharmaceutical Benefits Scheme.  Prior to this, the cost of the drug was quite prohibitive.  So on January 2nd 2008, I commenced treatment with Alimta and cisplatin. Happy 60th Birthday!  This continued for 6 monthly rounds of chemotherapy, followed by a three month hiatus.  After this, back on the same regime. During my time off over Christmas/New Year I became very unwell, with extreme pain in the back, and went into my appointment unable to straighten up.  I came out of the Doctor’s office medicated to the hilt, with strong pain killers, oxycontin and morphine patches – this would continue until 2010, with intermittent rounds of chemotherapy and rest periods.  My condition seemed to be stable.

The side effects of chemotherapy for me were considerable:

Tiredness

Peripheral neuropathy

Sore throat

Pain in back

Fluid retention

Nausea

Deep vein thrombosis

Stomach ache

Headaches

Leg pain

Hot sweats

Constipation

Mouth ulcers

Eye sight diminished

Initial hair loss (ok now)

‘chemo brain’ forgetfulness

Weight gain due to dexamethasone (steroid) overdose

As well, due to the effects of chemotherapy, my veins became smaller and it was decided to place a chest port into the right side of my chest.  This was done during day surgery, but I was kept overnight due to me commencing chemotherapy the next day.  This was a good thing, saving me the pain of the cancer centre staff looking for veins.

About this time, we decided to look for some alternative therapy to assist with a longer term answer to keeping well and healthy, and more importantly give a good quality of life – and we found China!  https://lorrainevilladon.wordpress.com/china-2010/

‘A journey of a thousand miles begins with a single step’ (Chinese Philosopher Laozi (604 bc-531 bc in Tao Te Ching, Chapter 64)

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One thought on “My story and diagnosis

  1. Karen Langdon says:

    So glad to see your story in writing. The story had only just begun with many more adventures in store as you continue to travel and show Meso that it can be beaten and provide hope for many other families as they fight the beast.

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