Trevor’s story: Living with Mesothelioma

In 1979 Trevor had a 4-year apprenticeship with an electrical contractor which involved running cables and general electrical work in Wagga Wagga, in areas that were known to have asbestos. Since then, he’s had a colourful life full of adventures, travel and work overseas.

Trevor has always been an active athlete who loved trail running and cycling. In August 2021, while recovering from a hernia operation he had a month before, Trevor was hoping to return to his exercise regime. On the eve of his 59th birthday, Trevor went out for a walk as usual to keep up his exercise.

Whilst out walking on one of his favourite running trails, he experienced severe shortness of breath. He thought it was due to a recent covid injection. He contacted his doctor who instructed Trevor to immediately come in to see him.

The doctor listened to his lungs and sent Trevor off for an x-ray, which confirmed he had a collapsed lung. From there he was sent to Emergency and admitted at Albury Base Hospital where the first CT scans were done.

Trevor’s case was brought up for discussion with medical specialists from St Vincent's Melbourne, after which Trevor was sent to Melbourne for further investigation. This entailed a pleurodesis and biopsy along with CT scans.

In August 2021, Trevor was diagnosed with Mesothelioma, a cancer affecting the cells which cover the lung and can affect the lining of other internal organs. The prognosis was not good.

When explaining to his wife Shirley, he told her it was a death sentence, and he was given a prognosis of 12 months. Following the prognosis, Trevor had a PET scan to determine the amount of disease in his lungs.  

Medical complications

Following his Mesothelioma diagnosis, Trevor had to determine a treatment path. Different oncologists had opposing views on possible paths.

After many discussions they decided that a trimodal therapy with chemotherapy, surgery and radiation would give the best chance of extending life as the disease was still contained. The chemotherapy was successful with more than 50% of the tumours responding.

This was followed by surgery to remove the left pleura and diaphragm. This operation was successful but the mesh diaphragm that had been inserted failed after the surgery. The surgeon advised that the repair could wait. However, the 5 weeks that followed saw Trevor not winning against the pain.

In January 2022, 5 weeks after the major surgery, Trevor was sent to St Vincent’s emergency by his GP. Trevor was told everything was alright and he was advised to discharge and go back the next week to repair the faulty mesh.

Unknown to him, what followed sent him to hell and back. The operation caused massive complications.

The surgeon found his stomach and intestines had become stuck to the mesh. The surgeon managed to get the organs off the mesh and replaced with a new mesh. The second day after his operation, Trevor had a drink, and which caused him to scream in pain for about 45 minutes.

He was wheeled into the operating theatre for another investigation. This time the thoracic surgeon found a hole in his stomach. He repaired by patching the hole with Trevor’s fat.

The terror did not stop there. Trevor continued to feel unwell, and the flush did not clear. One day later, a stomach surgeon was called in, who decided for another operation to investigate further. That operation lasted almost 7 hours.

The stomach surgeon found 3 more holes in the stomach and part of the stomach had gangrene and died, resulting in massive infection leading to sepsis.

One third of the stomach was removed to save Trevor’s life. He was then put on a feeding tube for 6 months to help him gain weight to prepare for radiation treatment.

The shock of the diagnosis had a big impact. Trevor reports trauma from being in hospital with several stays in the ICU. When he came home, he felt suicidal at the time. The Asbestos Dust Diseases Research Institute (ADDRI)connected Trevor with a psychiatrist, and this helped manage those feelings.

The delay in radiation treatment due to the complications unfortunately allowed one or more cancer cells to escape resulting in the cancer spreading again within 10 months.  

Support from icare

Following advice to get his affairs into order, Trevor spoke to his lawyer who prepared an affidavit and contacted icare’s Dust Diseases Care with an application for support and compensation. He was allocated a case manager who provided Trevor and Shirley with support.

Dust Diseases Care provides treatment and financial support to workers who have a disability as a result of a compensable dust disease contracted in an NSW workplace.

“My case manager is great. I have many complications and my bills are massive. My wife Shirley does all the paperwork for claims and appointments. icare pays for flights to Sydney and accommodation when I go to Royal Prince Alfred hospital. We have been given phenomenal support to help making our claims seamless”.    

“If there was anything we needed and things we didn’t know we needed, it was all there. When I was in hospital, icare contacted the occupational therapist at the hospital to understand what kind of reclining chair I was using so she could order one for me at home. I sit in this chair for up to 6 hours a day”.  

“icare wants the best for me. My case manager is good at keeping in touch with where we are, what we need and getting access to things we didn’t know we needed (such as hand held shower head, shower chair, etc), so I can have the best quality of life”.

Support from ADDRI

Trevor was also connected with Asbestos Dust Diseases Research Institute (ADDRI), a dedicated research institute aiming to research the causes and treatments of asbestos and other dust-related diseases, particularly mesothelioma.

icare provides funding to ADDRI through the Dust Diseases Board support organisation grants.

“The staff at ADDRI have been amazing. I had trauma in hospital at Christmas time last year when the cancer was spreading. I had several episodes in ICU and was suicidal when I came home. Jocelyn found a psychologist for me which helped. Before that she also helped me with referral to pulmonary rehabilitation.” said Trevor.    

“We are privileged to receive lots of support from ADDRI and icare. We are grateful for the support. It helps anchor us”.   

A slower pace

Trevor had always been fit for his age but these days he struggles with fatigue. He is on a maintenance level of chemotherapy and has regular PET scans and check-ups.

He has lost a lot of independence due to his condition though he will still get onto the chainsaw when he has the energy. His wife Shirley does most of the work around their farm.

She cooks him delicious foods with organically grown vegetables from their farm.  Some of his favourites are cottage pie, chilli corn carne, spaghetti bolognese, curry and veggies.

“Shirley is wonderful. It’s very hard for her, I’ve got a whole medical team and she doesn’t have anyone to help her”.

Trevor and Shirley are a great team, and big advocates for others with a similar experience.

Finding joy in the little things

Trevor tries his best to keep on top of his exercise. When he has energy, Trevor will go for walk. On the farm, he loves spoiling the chickens, all which have their own name. Due to this fatigue, he naps quite often.

Despite not able to run or mountain bike anymore, these days looks to find joy in the little things like fly fishing, but Trevor gets tired after a few hours.

“I’ve passed my use by date of 12 months, so every day is a blessing. To do the things you love is the best therapy you can have”. 

Hear from Trevor on the ADDRI podcast