Living in Queensland, Australia I experienced continual slightly dull headaches and backaches, nothing really major just nagging aches and pains. Usually a panadol would fix it ... .
While living in Brussels, Belgium severe headaches. Visits to specialists and then referred to a neurologist at a leading hospital, head scans etc all results came back 'inconclusive'.
Living in Christchurch, New Zealand I experienced 2 days of intense migraines. A visit to the local doctor where my blood pressure was through the roof/sky high! He called an ambulance and rushed me to hospital. Following various tests including kidney tests - again inconclusive results. I was put on high blood pressure tablets, this helped to alleviate the migraines/headaches though the medical team could not pinpoint exactly what had caused all of my symptoms and said it was better to leave sleeping dogs lie!
1994 to 2003
Extreme chronic unexplained fatigue. Visits to specialists/many blood tests - all inconclusive and simply diagnosed with the term chronic fatigue. While living on the Gold Coast, Queensland, Australia from 1996 to 2001 I was working full time, then eventually down to part time work where I would have to have a lie down on a bench during my lunch break due to unexplained chronic fatigue. My iron levels etc were fine. My breathing at times would be quite shallow however tests were again inconclusive.
2001 to 2003
Living in Launceston, Tasmania, Australia where we ran a successful bed & breakfast (change of lifestyle), I would have time for walking up and down the hills there and along Cataract Gorge. I would find exhaustion would settle in within a short while walking and would have to rest. At this time I had a pap smear done, the pap smear result came back 'abnormal cells'. My local doctor said 'Nothing to worry about, we will check it out in a year'.
Noticed a hard raised lump forming on the righthand side of groin area. While in Melbourne on holiday, I had ultrasounds/tests done at my mum's local doctor - nothing showed apart from a soft tissue lump. I was told all okay and possibly due to injury.
We returned to the mainland and back to Melbourne, Victoria, Australia early 2003. I was quite fatigued still, the 'lump' appeared to flatten into the groin area - looked slightly raised but nothing serious - thought it must be my imagination! My breathing appeared shallow though nothing to worry about .... .
One night I experienced the worst pain imaginable coming from my spine through to this 'groin area'. By the morning it has gone. I went to see the doctor who I had seen about this problem in 2001. Her comment was 'oh Louise, it hasn't gone away yet?'. I asked her to refer me to a specialist.
The specialist asked me why no one had ever ordered a fine needle biopsy to the raised groin area! He ordered this on the Monday. On the Thursday night at 8pm, while home on my own ... he rang me. 'Louise, there are tumour type cells there, I need you to come in to my surgery in the morning and I will mark it ready for surgery'. I said to him 'What does this mean?' His response - 'Its malignant cancer, possibly ovarian!'.
October - November 2003
Blood tests done, waiting for hospital appointment.
Hospital operation overnight.
I woke up and was told 'Not ovarian cancer, it is a mystery ... will know lab results in a couple of days'. Operation involved taking as many tumours out that surgeon could get at in the linings of stomach, abdomen, ovarian area and diaphragm, plus heaps of flushing with a chemotherapy agent.
Surgery performed Debulking Laparotomy (Surgery for Ovarian cancer removal of tumours and a flush of chemotherapy). The 'groin' tumour was the size of a golf ball and growing by the day plus many other tumours throughout the peritoneal linings that had spread.
Visit 2 days later, Keith and myself went back to see the specialist, Mr Robert Pucius confirmed that is was a 'deadly and aggressive cancer' He looked at me with tears in his eyes and said 'Louise, I am very sorry to have to tell you this news, it is me mee soo th th ...'! I looked at him, he was having trouble pronouncing the word. I said to him 'Its not mesothelioma'! He said 'Oh you know about that cancer.' I said 'Yes, asbestos cancer, my dad died of pleural mesothelioma in 1985'. His response was 'Oh I am so sorry, I'd advise to go home and get yr affairs into order. I will refer you to an oncologist, there are 2 that I would recommend ...'. I asked him how long I had to live. He said 'not long, this is an aggressive cancer and your tumours are showing to be very aggressive. Possibly a couple of months to a few months depending on treatment and how you respond'.
We went home, fell into a heap on the bed cuddling each other and basically feeling very numb and like our life was falling apart. I could have handled any other cancer, however not MESOTHELIOMA. My dad had worked with asbestos products - I hadn't ever worked with asbestos products ... or been exposed SO WHY DID I HAVE THIS CANCER?
We stayed huddled on the bed for what seemed like a few hours, Keith would say to me 'you have to ring your kids as they will be worried sick'. My response was 'not just yet, I can't tell them'.
A gorgeous girlfriend, Sue knocked on our front bedroom window and called out 'Louise I know you are in there, come on open the door, I have your favourite muffins'! Thank you Sue, I'll never forget those magical words! It brought us out of our nightmare few hours huddled/cuddled on the bed back into reality. Keith said to me you have to ring the kids, I said to please text them and I will ring later on when I was able to breathe without it seeming like I was choking with emotions and anxiety from the shock of being diagnosed with asbestos cancer.
My pain from the operation made me very weak and in pain, to have a shower took all of my energy. I remember going outside and looking up to the beautiful blue sky and thinking 'Why?' then walking around my garden and crying so hard that it all seemed pointless just living as my life was ending thanks to mesothelioma. I felt like I was choking due to the anxiety of this and on edge from the various medications. I had a beautiful husband who I loved very much, 2 beautiful daughter and their partners, 4 beautiful step kids and their partners and kids and a lifestyle that I loved as well! Yes I was so ill, weak, in pain and dying. I couldn't get out of bed without the aid of Keith to help put my slippers on, dressing gown around me .... . I remember lying in bed and just thinking to myself, if I close my eyes and not wake up it will be okay and the world around me will continue without me in it.
Next step was saying goodbye to all family and friends around Australia. Lots of beautiful hugs and crying for a few weeks until January 2004. We made a flying trip to Brisbane and the Gold Coast to say goodbye to family and friends up there. Lots of lovely catchups were arranged, everyone was hugging me and crying along with me, it was a very emotional time saying goodbye.
John Strano's story and my commencing to take control of living with mesothelioma
One night we were on the Gold Coast at a friend's home in Robina having dinner. This friend, Kevin said to me 'oh you should go and visit my mate John Strano, he has asbestos cancer and still alive after a few years - he is living on the Gold Coast'. So the next day we rang John and visited him at his home. He told his story to us - 5 years ago he was diagnosed with breathing difficulties/a cough and coughing up blood/pain in his chest and went to see the doctor. He ended up in hospital where 2 specialists told him he had asbestos cancer and was going to die. One doctor wanted to operate, the other doctor wanted to wait and see until the pain took over then give palliative pain relief.
John had been a deep sea diver and it was through the equipment he used that contained asbestos was where his exposure happened.
John went discharged himself, went to Burleigh Beach - dived in and swam around to the next cove. Coughing up blood and finding it hard to breathe, he thought to himself if he made it then he would heal himself. He made it ... that was the end of 1999. Today (2013) he is alive and reasonably well. Winter plays havoc with his health, so he takes himself off to bed and armed with many natural healing foods/drinks he lies low for a few weeks. John said to me that he believed that a natural diet and calming mind was very important to survive any length of time with mesothelioma. He did not believe that having medical treatment helped, in fact his feelings were it did more harm than good. More on John to follow ....
January 2004 -
My Chemotherapy story with Peritoneal mesothelioma cancer
I was in turmoil after seeing John in Queensland, what should I do - keep my oncology appointment and have medical treatment or follow John's advice and his strict health regime and have no medical intervention! I decided that I wasn't brave/strong enough to just go it alone without medical treatment, however I would also heal my body myself with other natural organic treatments, keeping my mind in a positive state throughout my healing and living in the moment, letting the universe take care of itself.
At last the day arrived for my very first appointment with Allan Zimet, a leading Oncologist in Melbourne, Victoria. It was a very emotional day for Keith and myself. Allan looked at my scans, asked a few questions, ordered some more scans and blood tests and said he would like to commence chemotherapy, a combination of cisplatin and gemzidabine for 18 sessions. I asked him if he had any long surviving mesothelioma patients on his books to which he responded 'yes I have 4, one died recently that lived with meso for 8 years, currently 2 who are up to the 8 years mark and one who is now up to 5 years.'
I asked him how long he thought that I had, his comments were 'a couple of months if treatment does not work, a couple to a few months maybe a couple of years if treatment is successful in stabilising/shrinking the tumour activity'. Some patients decide not to ask these questions up front, for me I like to know what I am up against from the start. It is the 'average statistics' not always true! I was determined to get to 5 years and assess my situation then.
So within a week I commenced chemotherapy treatment.
Chemotherapy consisted of day chemo for gemzidabine and overnight hospital stays for cisplatin, plus weekly changes of my 'port' that was put in place for the chemo needles to go into rather than trying to get a non-existant vein that would continue to just collapse making the huge chemo needles pull out and the procedure would be tried again making my veins/arms very painful.
I honestly have no idea how I got through the chemotherapy, I remember the first few days of just getting through them by following the instructions to a tee with steroids, anti nausea meds etc and trying not to throw up, trying to get some sleep, and to calm the anxiousness of my situation as this was enhanced thanks to the steroids. As time went on with my treatment, I lost more weight, looked ill and couldn't regain my strength.
Finally the chemo was over, my port taken out and the final scan done. Shrinkage had happened. That magical word for meso! SHRINKAGE. My oncology visits were now down to fortnightly in place of weekly, eventually 2 monthly visits were the normal procedure for me unless something presented itself then I would give my oncologist a quick ring and an appointment arranged, usually followed up with a full CT/Pet scan and blood tests and a visit back to see my oncologist for results.
I was not going to take my grim prognosis without a fierce fight and with full support of my husband and children, my strategy paid off. I enjoyed five years of “reasonably good health” and lived my life on my terms.
Then in 2009, I received a second blow – I had developed pleural mesothelioma. I now have the distinction of having a very rare and unusual case of mesothelioma as my peritoneal mesothelioma is totally separate from my pleural “outbreak/strain” of mesothelioma.
Once again, myself and family faced an aggressive course of therapy to battle my cancer. Through care from “my very brilliant oncologist (Allan Zimet) and cardiothoracic surgeon (Julian Gooi),” I endured three major operations, a three week stay in the hospital, and 16 sessions of alimta/cisplatin chemotherapy involving overnight stays in the hospital.
Now, it is over four years since completion of my last round of chemotherapy and I have barely missed a beat in enjoying my life with my family, friends and beautiful community of people living with an asbestos related illness and their families. I am “a mother to six children (2 beautiful daughters) and (4 great stepkids) and proud Nana/Nan Nan/Nanalou to four beautiful little grandchildren, seven step grandchildren and two step great-grandchildren and another little grandchild due in August 2013.” I visit them every chance I get and just returned from an extended trip into Melbourne where I was able to enjoy “special Nana time.”
Aug 2013 to Nov 2013
Chemotherapy for palliative treatment of pain and breathing symptoms as the CT/PET scan results early Aug 2013 - tumours linings of left and right lungs, tumours wrapping around the heart area, peritoneal area tumours progessing.
My oncologist Allan Zimet decided to try a course of chemotherapy in the hope it would help to relieve my breathing and pain.
Results after chemotherapy
Shrinkage of left pleura lung lining, right hand side of pleura lung lining - stable, peritoneal still growing ... after 8 sessions of cisplatin/gemcidibine, then carboplatin/gemcidibine when my body became toxic to cisplatin and the nasty side effects of it.
I remain well - tumours/fluid growing in particular the peritoneal area however it doesn't stop me!
I am flying to Washington DC to the 10th annual ADAO Asbestos International Conference where I will be speaking and also received an award for recognition of what I do on a global scale of support, advocacy and awareness.
May to Nov 2014
Upon my return home from Washington DC and New York I had a CT scan of chest, abdo, pelvis and this scan showed extensive tumour and fluid growth. I immediately commenced further Chemotherapy of Carboplatin/Alimta and towards the end of 2015 Alimta on its own.
Unfortunately a mass of tumours/fluid kept growing and this time Chemotherapy was unsuccessful.
Dec 2014 to Jan 2015
My body was shutting down, blood transfusions needed every few weeks as blood cells were not producing enough red cells and my weight was rapidly declining. Nausea and pain were causing distress and my breathing becoming depleted. I called in Palliative Care who commenced home visits fortnightly. 14 Jan 2015 I was admitted to the Oncology hospital ward very unwell and extremely weak. A CT scan revealed my bloods were shutting down and a large tumour had protruded through to my stomach and dangerously close to arteries and could clot to the heart causing death anytime. I was sent home to die, my oncologist could do nothing else for me.
Jan to Feb 2015
I was given 2 weeks of intensive radiation specifically to the large tumour that had invaded my stomach. Nausea, pain and on oxygen was my routine and finding the strength to muster to have energy to do anything of quality of life.
Commenced Keytruda (immunotherapy drug) every 3 weeks for life
The above link is my email address - please feel free to contact me - I would love to hear from you.
Thank you for reading this page and I will update soon.