My Story

The new millenium had not started well. I felt constantly nauseous, had no appetite and slept about 14 hours a day. Diagnoses varied. One doctor said that I had typhoid, another gave me Mylanta for a minor stomach complaint, and in Australia I was told that it was just a tropical bug. It would simply take time.

They were wrong. Instead of getting better, things got worse. My stomach became bloated and I could barely keep going as I tried to put in a decent day of work at the Bandung International School . The principal, Angus Ogilvy, became concerned and after consultation with the school nurse, he suggested I visit a clinic and have some tests.

I made an early appointment and dropped in on my way to school. I have always been heavily infected with the protestant work ethic. I only take a day off work if I am half dead.

Within seconds of commencing the ultrasound on my abdomen the operator said go home lady, you have tumours everywhere. I did not even bother to have any of the other tests. I did not go to school either. Yana, my partner took me straight home.

What can you do and say in this situation? I just cried and cried. I could not think clearly. Again Angus came to help. He said that I should go to Singapore as the hospitals were better there. I did not have to worry about paying for the medical costs as all teaching staff received a comprehensive health insurance policy as part of their work package.

Within 12 hours I was on my way to Singapore. My timing was far from perfect. The Chinese New Year had started literally minutes before I turned up at the admission counter. I was asked to come back on Tuesday. It was only early Saturday morning. I put my foot down and refused to go.

Reluctantly I was admitted and a doctor came to examine me. Within a day I was operated on. Everything was very quiet and empty. It was obviously an emergency operation!

Ten days followed in a hospital in a strange city. My 47th birthday came, there were telephone calls, faxes arrived, and even visitors materialized.

Nothing had been said about my condition so I asked. I was told that I had stage 3c ovarian cancer. I innocently thought that there were about 5 stages. Perhaps I was in the middle somewhere. No. I was in the last stage but one. It was apparently serious stuff and I was told that with good chemotherapy I could live two years.

Wonderful!

I resigned my job at the school, the best job I had ever had, packed my belongings and said goodbye to Yana, my partner of a year. I returned to Tasmania to stay with my daughters and embarked on a new life of Chemotherapy and standing in queues at Centrelink.

I did this as cheerfully as I could but after two months I was told that I was not responding to the chemotherapy. More tears.

I did not know what to do but felt restless. If my time was limited I wanted to travel. Launceston was just too small.

I went to Indonesia again but things were not the same. I had too much time on my hands and Yana wanted to move on. I understood perfectly. I could hardly offer him a good future so when my visa expired I returned to Australia.

Back in Launceston I started to research alternative approaches to cancer treatment. I ate a diet of fruit and vegetables and started yoga.

Then Yana wrote to say that he was missing me terribly. I returned to Indonesia and kept up the healthy lifestyle. Fresh fruit and vegetables were not hard to find. I even did some voluntary work at a psychological assessment centre. I monitored the cancer myself by having my blood tested every month. After 4 months it was obvious that the level of cancer was very high so I headed back to Australia.

This time I went to live near my brother in Brisbane. It seemed a good move as one of my daughters was living nearby in Byron Bay.

The doctors I consulted said that I should try chemo again. I had no other options. The bloated abdomen appeared again. I had weekly draining sessions during which I was relieved of at least four litres of liquid. Instant weight loss! I did not need to lose weight. I was actually far too thin.

The alternative approaches had not helped and neither had the traditional treatment in Indonesia. Some very expensive Chinese medicine had done nothing but empty my bank account. Noni juice, shark cartilage, and a whole host of other pharmaceutical products seemed to have little impact.

I tried to build up a new lifestyle. I bought a yacht and moved onto a marina. I made many new friends and learnt about sailing. Luckily, the chemotherapy did start to work. I lost my hair for the second time and wore a scarf that gave me a very nautical, maybe even piratical look. I went to a cancer support group and did some voluntary teacher aid work at the local school.

I was counting the weeks before Yana could join me. Then the Australian Immigration Department knocked back the visa application for Yana. I was devastated. More tears for days.

A glimmer of something positive appeared. A doctor said he could operate and this would give me a symptom free future of a year or two. I took heart.

We got to the pre-operation stage. It was my very persistent questioning about a suspected blood clot that sent the doctors back to the scans for a closer look. No, they could not operate. The cancer was all over my liver. A few days of tears followed.I tried to be positive, my tumour markers had gone down from 3,000 to 105.

Meanwhile after 7 lots of chemo I stopped responding to the Taxol/Carboplatin drug combination. The cancer would start doubling every month if I stopped now.

I asked the doctor if I could try another chemotherapy, preferably in tablet form. I could go back to Indonesia and Yana. Intravenous chemotherapy tied me to hospitals.

Armed with 8 months supply of a drug, that might or might not work, I returned to Indonesia and to Yana who had faithfully waited all those 8 months.

My life fell into place. I was offered some teaching opportunities, our old house was still empty, friendships were resumed. The tablets were revolting but I was able to get about as usual. My tumour count went down to 53. Remission was only 20 points away. I gave up my stringent diet and just ate what I felt like. I put on weight.

Yana and I decided to get married. At 48 I was about to embark on a new, although uncertain future with a very nice young man.

I now gratefully take each day as it comes. I am not hard on myself and I have a lot of fun. I make plans. Even if they need changing or modifying it does not matter. I need things to look forward to.

I hope to be one of the few that can live with ovarian cancer. This cancer is a deadly one. Women do not have any symptoms until the disease has reached an advanced stage. My family has a history of breast cancer and so I had regular mammograms and pap smears. No body ever talked about Ovarian cancer. All it needed was a CA125 blood test. Simple really.

Update January 7th 2002

A new year. Each year is an achievement. The Hexalen tablets that I brought with me to Indonesia from Australia have stopped working and the cancer is now on the rise again. I am just enjoying myself at present and will probably head back to Brisbane in March. I'll have to have another round of Chemo but am in no hurry. Besides, my doctor had said that I should wait till my CA is around 1000 and then come back. I'll take him at his word. Meanwhile I do feel so much better now that I am having a break from the chemo.

Update February 9th 2002

The cancer has quadrupled over the last six weeks and so I have had to reassess my plans. My stomach has become very bloated again. This is very confusing because I didn't have physical problems last year until the CA level was almost over three thousand. Things are not looking good. I have stopped all my work commitments and am now prepared to leave Indonesia in the next few days. I just want to go to the embassy first and see if we can organise something so that Yana can accompany me. I would like him to be with me if I have to embark on all that revolting treatment again.

Update June 4th 2002

It is almost half way through the year and I'm still walking around quite cheerfully. Things did get a bit worrying for a while and I was feeling fairly weak but it looks as though those days may be behind me. I took the drug Caelyx for three cycles but it really didn't have quite the impact we had hoped for. Towards the third month it seemed to be maintaining the cancer on a steady level but we needed to get the cancer down. The abdominal fluid is still a problem and this will only go if the cancer recedes a little. A change of drug was indicated. I went back onto Carboplatin which was coupled with Tamoxifen and felt almost instantaneously better. I realise that this is impossible but it occurred nonetheless. I'll be looking to the next blood test with considerable interest.

Update November 14th 2002

The carboplatin, unfortunately, caused an allergic reaction and I had to go onto cisplatin which seemed to be a lot less sophisticated. The CA 125 was not showing any improvement and was up to 3000. Things were getting diabolical. We then combined the cisplatin with taxoterre. I started to respond although all sorts of unpleasant side-effects emerged. The nausea was persistent and I felt fairly exhausted most of the time. I spent days lying down and was very poor company. Hair fell out and I was bald for the third time. This upset me greatly as has the facial puffiness that emerged after a dose of dexamethasone. After six cycles I was down to a CA125 of 105 and the doctor recommended that I stop chemotherapy for a few months. Quite rightly as my body had received a considerable battering. I can now look forward to a nice summer and worry about next year when it comes.

marionecp@hotmail.com