South Australian Rex Wegener was proud of the fact he had hardly ever been to the doctor. Even in his early 70s the retired builder - and former gymnast and state champion rower - walked three kilometres every day before breakfast.
But then Rex and his wife Catherine, from Goolwa on the mouth of the Murray, were given the news no-one wants to hear: Rex had mesothelioma - a rare type of cancer that can develop decades after exposure to asbestos. There is no cure.
Rex died aged 75 on September 13, 2017, less than two years after his diagnosis. November is Asbestos Awareness Month. To mark this Rex's widow Catherine is sharing their story with The Senior.
"I want to do as much as I can to help, to stop someone else suffering from this terrible disease. Rex's story needs to be told," she said.
"Before Rex got sick he would go for a 3km walk every day before breakfast. One morning he came home from his walk and said he had a bit of trouble in the last kilometre. So he cut his walk down to 2km, then down to a short 1km walk.
We thought it was just the cold weather. Then it got worse. He began to get very cold. He was warm person usually and never got cold - that was always me!
He was wearing four layers to go to bed. Then he started not being able to breathe properly and decided to sleep upright on a chair in the lounge wrapped in a big blanket.
It was at this point we decided it was time to go to the doctors. Rex had hardly ever been to a doctor in his life. He was normally so healthy.
The doctor tapped on his chest and said, "sorry mate, you've got fluid on your lungs". Mesothelioma is one of the most difficult asbestos-related diseases to diagnose. I think they knew what it was but didn't want to say until they were absolutely sure.
But we needed to know. I had to know. I went on the computer trying to find out what was wrong. I didn't mention to Rex what I was doing.
While exploring the symptoms online, this word 'mesothelioma' kept coming up. I had never heard about this disease - mesothelioma - before but I guessed that this was what it was, because of his history working as a builder. I felt dreadful.
We had to wait about six weeks until my worst fears were confirmed and we were given a firm diagnosis. He was told by the specialist: "We can't do anything to help you. We can only give you something to relieve the pain."
Rex was a man who just accepted life. He was good like that. He said, "Well, I didn't expect to go out like this, but what can you do?"
With this disease you can't do anything. You're just going to die and that's it.
Then on one visit to a doctor, she discreetly passed me a piece of paper across the desk. She said, "Put this in your bag and look at it when you get home". It was a flyer for the Asbestos Victims Association.
At that point I didn't really know the extent of mesothelioma. I didn't know how to say it, I didn't know how to even spell it.
So I picked up the phone and made the call. I said, "I don't know what to do." I asked terribly hard questions I didn't want answered but at the same time I had to know Then the lady on the phone asked if I would like someone to come and talk to us at home and I said yes.
So Lesley Spears and Maxine Williams came from Asbestos Victims Australia SA and they were absolutely marvellous. We sat around the kitchen table and talked, they are both widows to mesothelioma and they shared their own story.
And because Rex had a good sense of humour, by the end of the visit we were all laughing and joking. They have been a great backstop for me and have supported me through this journey.
In the last months, we spent all our time at doctors and specialists. We didn't really have a life of our own.
Rex decided to go through chemotherapy. "If it will give me a few more months I'm happy," he said. Even when he was sick he would joke. He had a lovely, happy nature.
But the chemo knocked him about. He spent the rest of his time working things out for me.
He planned things, wrote things, wrote out whole lists to make sure I was safe and would be ok once he was gone.
Rex spent the last six weeks of his life in intense pain. He never complained but I could see his pain. He was struggling. The pain of this disease is absolutely dreadful. He was put on morphine patches, then liquid morphine and a nurse visited every day to drain his lung.
One day at home he said to the nurses, "My legs aren't going to hold me up anymore". But Rex didn't want to go to hospital so they said, "We'll bring the hospital to you". And they did, the next day.
From that day he never got out of that bed as his illness deteriorated and the palliative care nurses came and took over.
On the day Rex died, he had fallen into a deep sleep and the doctor looking after him said to me, "He'll go tonight. Will you be alright?". He died at 10.30pm that night. He gave one big breath and he was gone. I sat with him all night and talked to him. It was just the two of us. Even though he was gone, he was still with me.
I'm sharing our story, as I don't want anyone else to go through this. My hope is this might help someone. There are many older homes being renovated now. There could well be a spike coming up, with these younger people being exposed to asbestos.
I don't feel angry. But I feel he shouldn't have died. This should not have happened. Now I've got to try and help someone else."
Asbestos Awareness Month
November is Asbestos Awareness Month, which aims to educate Australians about the dangers of asbestos in and around homes. Australia has one of the highest rates of asbestos-related diseases in the world.
Each year in Australia, between 700 and 800 people are diagnosed with mesothelioma. In 2018, 699 people died from this rare and aggressive cancer.
According to the Australian Institute of Health and Welfare, the 'average' Australian with mesothelioma is male, diagnosed at around 75 years of age, was exposed to asbestos in both occupational and non-occupational settings and lived for around 11 months after diagnosis.
Withasbestos-related diseases continuing to increase among Australians as a direct result of exposure to asbestos fibres during home renovations and maintenance, campaigners say it is vitally important to raise awareness about the dangers of asbestos and how best to manage it in and around homes.
Asbestos: know the risks
- Australia has one of the highest incidence rates of mesothelioma in the world
- Close to five million homes or 1 out of every 2 Australian homes still has asbestos
- All houses built or renovated prior to 1990 could contain asbestos
- Mesothelioma and asbestos related cancer are on the increase
- Breathing in asbestos dust is deadly and can kill you
- Two people per day are diagnosed with mesothelioma asbestos cancer
- This rare and aggressive cancer has no cure