Janet's mesothelioma story

Mesothelioma is a rare cancer that starts in the membranes lining the chest or abdomen. Almost everyone who develops mesothelioma has been exposed to asbestos. Read Janet's story of caring for her husband who passed away from mesothelioma.
Janet's mesothelioma story

Hello, I’m Janet. I live in western Sydney, and I was a carer for my husband Peter, who passed away from mesothelioma at age 63.

"Peter was diagnosed with mesothelioma at age 62. He actually had a fear of it – he’d helped his father build a fibro house and worked for a plasterer when he was in college.

There were niggling symptoms for a number of years: he’d had trouble swallowing and choked often, he couldn’t project his voice, and then he was coughing. An x-ray showed fluid on the lungs and then a CT scan showed a tumour. A biopsy confirmed it was mesothelioma.

The doctors told us the disease was terminal, and the longest someone had lived was eight years. Peter latched on to this number and told everyone he was determined to make it to 70. I realised this wasn’t realistic because the average was closer to 12 months, but it gave him hope.

Peter saw a lung specialist on the north shore as a private patient. The specialist prescribed chemotherapy in mid-December, but treatment was scheduled to commence mid-January. The oncologist said there would be periods of wellness between chemo sessions, but that wasn’t the case. Peter battled constant pain that was never well controlled."  

 

“I made a table to record information about Peter’s pain medication so I knew what to dispense when. I took it to every appointment and highlighted all the breakthrough pain in a different colour to show how often the pain relief wasn’t working. The medication would only work for a few days, then it seemed like we would hit a wall and ask, ‘What do we do now?’”Janet share block quote

 

"Peter was in so much pain that he was admitted to hospital. They tried to do a nerve block, but discovered the tumour was pressing on a vein so they had to insert stents. Peter was in and out of intensive care. Our GP and palliative care physician were incredible. Both gave us their personal contact details in case we had questions after hours or between hospital admissions.

Peter didn’t want a clinical death – he wanted to die at home and a palliative care physician was trying to help us make arrangements. Unfortunately this wasn’t possible, and Peter was in hospital when he passed away.

A palliative care nursing team would have been helpful in the last stage of his life to advise on how best to support Peter and make sure he was kept pain free and his dignity maintained."

Janet's story helped shape the new state-wide Cancer Plan

Janet's story helped shape the new state-wide Cancer Plan

The NSW Cancer Plan sets out a coordinated and collaborative approach to cancer control with the aim of lessening the burden of cancer in NSW. Find out how you can have your say and help shape the future direction of cancer control in NSW.