The first few months can be so difficult as you try to get your head around it, whether it’s you or a loved one. My husband Rod had been secretly preparing himself for his diagnosis as his Mum had died from mesothelioma in 2005, but it still brought our lives, as we knew it, to a screeching halt.

Initially, all we heard was that standard prognosis, the “average” survival time which is all they can give you. Rod had an urgency to start treatment, get the compensation case happening ASAP, and get his affairs in order. But then what? We did a lot of things online, so we searched out survivors – and found several people out there around the world who were surviving numbers of years after diagnosis. Once treatment started and Rod was feeling reasonably good, we were able to sit back a little and think about what next. The following is something Rod wrote at that time:

“I was angry, saddened and depressed at my imminent demise for a while. I quickly learnt that being angry, sad and depressed was no way to live your life. It was also no way to die. We embraced what we had left and did things that mere mortals only dream about.”

We both loved to travel, and we made a conscious plan to travel as much as we could whenever Rod was feeling well enough between treatments. When he was on the initial chemo, that meant planning a week away almost every three weeks, because he managed to feel quite normal during that third week and we weren’t going to waste it. He had some breaks between chemo cycles where we took bigger trips. We took that European cruise along the Rhine and other bucket-list trips. His daughter got married in New Zealand, so we went for that and what became an incredibly memorable family holiday with the whole gang in the snow.

We had whole family weekends away with all 10 of us plus grandkids, we bought a caravan and went on trips within our state. We later decided to swap that for a boat so that Rod could fulfil another life dream. He had toyed with learning to play guitar a few years earlier, so he tried a bit of that when he felt like it. He went back to creating art – another thing that had fallen away through the years. He made the decision to fall back into the things that brought him joy, and I was there to enjoy every moment with him.

He entered one of his paintings in an art competition through Palliative Care Australia with the theme “Live as well as possible, as long as possible” and he won the Emerging Artist award. The competition theme was around palliative care, and his entry  – a painting of the two of us jumping off the boat into the water and enjoying the sunset – was titled “Silver Lining”.

Rod survived more than four years living with mesothelioma, and later this is what he wrote:

“Even taking away the treatment, the last four years have been some of the busiest years of my life. We’ve travelled more, experienced more and experienced new things, seen our children get married and the arrival of beautiful grandkids.”

He knew what having mesothelioma meant and that it wouldn’t last forever, but he was very glad that he didn’t waste any of his time. He felt that he had lived a full life and had many adventures that made him happy. His family and I are grateful for all the extra wonderful memories we made with him too.

Paige

Rod fought a good fight for almost four and a half years, passing in March 2022. He never gave up hope, living and loving to the end. You can find Rod’s story here, where he shared his very real journey in regular blog articles.

The diagnosis finally arrived. “You have mesothelioma”.  Prognosis? “12-18 months”.

The previous year, I was travelling the Himalayas on a 150cc motorbike with my son Adam. At 60 years of age and completely inexperienced on trail bikes, we maneuvered through goat tracks with massive drop-offs to one side and regular rockslides on the other. We had travelled 5500m far too quickly and both suffered altitude sickness. From this, I developed a chest infection. So weak, I often fell from my bike. Little did I know, my condition proved to be the catalyst for something far more threatening to my survival.

A few weeks after returning to Perth, I noticed a pain in my right side when I coughed or sneezed but disregarded this as a legacy of the many motorbike falls. After six months of the same, an ultrasound showed nothing. Three months later the pain persisted full-time requiring a further visit to the doctor. An x-ray showed I had four litres of fluid in the right plural cavity.

Forty years ago, I had helped a friend erect an asbestos fence with me doing the power-saw cutting. Unaware of this, the specialist advised that I had most likely ingested a microscopic piece of asbestos some forty years ago. My oxygen deprivation in the Himalayas had awakened a sleeping tiger.

So began a litany of treatment failures and disappointments which have dogged my existence for the past three years. Firstly, a failed pleurodesis (to stop the fluid building up) led to a drainage tube which attracted a staph infection at the site. Three different chemotherapy drugs and radiation all took their toll but failed to halt the monster which travelled north to my neck (causing swallowing complications) and south to completely engulf my abdomen. This is now causing the majority of my discomfort.

Much to the surprise of my oncologist, I am still vertical and active and continue to share my love and life with my wonderful wife Sally, four sons and a new batch of grandchildren.

Bernie (June 2016)

Bernie fought a good fight, surviving over three years and living life to the fullest in that time. He passed peacefully in October 2016 surrounded by his loving wife and sons.

If you, or someone you know, is affected by mesothelioma, do not hesitate to reach out to the Reflections team who provide care and support based on lived experience.

Jo reached out to Reflections in August 2022 as they struggled to navigate the terminal diagnosis that would take Mark’s life at the age of 59. This is their story…

Mark was my rock; he had become my caregiver after an accident ended my nursing career, and a series of unsuccessful surgeries put me in a wheelchair for a while. He took carers’ leave and accompanied me to all specialist appointments. Mark encouraged me to fight back and find something to focus on to aid my recovery. He supported my love of dogs, which my career didn’t really allow for, volunteering himself for all the puppy duties I couldn’t physically manage. Our darling labradoodle puppy, Ted, joined us in 2015. Ted turned my life around and, together with Mark, became the driving force behind my physical recovery.

I began studying to become a dog breeder. Mark and I registered Moogi Labradoodles with the Australian Labradoodle Association. We had our first litter in 2020. We were both totally in love with our dogs, and Mark utilised his amateur photography to capture beautiful memories for our puppy families.

To his knowledge, Mark hadn’t come across asbestos during his career or renovations at home. He grew up on a farm in rural England. His dad was a fireman in the 1970s, retrospectively, a potential source of asbestos fibers from his uniform after checking fire blankets. Mark and his younger brother used to play out on the farm with anything they could find when they were children. This could have been asbestos sheeting used for making dens… we will never know where the fibers that Mark ingested came from.

Towards the end of 2021, Mark had noticeably less energy and appeared to be depressed. He regularly saw his GP for diabetic blood tests, but nothing was ever flagged as abnormal. By March 2022, he was spending most weekends in bed and just managing to get through his working week as an IT security specialist. In May, his regular blood tests showed reduced red blood cells but still within normal ranges, so no major red flags. However, his GP referred him for a colonoscopy to check for bleeding, which was scheduled for early July.

Mark became sick the last week of June. He spent the week in bed unable to eat, just drinking electrolytes and having gastrointestinal problems. He refused to see his GP until day five and was then rushed to the emergency room, admitted to the Oncology ward, and subsequently diagnosed with peritoneal mesothelioma on his 59th birthday.

Mark’s diagnosis was terminal with a prognosis of 12 months. He received two rounds of chemotherapy to reduce the peritoneal tumour and bowel blockage and to allow him to return to a more normal diet. The chemo was unsuccessful, and six weeks after his emergency admission, he was discharged under hospice in-home care by Silverchain.

The day Mark was being transferred home was the day Lizz dropped everything and came to make sure I was okay and had everything needed to accommodate Mark’s needs at home. She checked that everything was arranged including the delivery of a hospital bed prior to Mark’s arrival home.

Lizz was the first person I’d spoken with who’d been on this journey. She made sure I knew what I needed to know and offered support in the days to come.

Silverchain were amazing, day and night, over the next three days. Mark was able to spend his last few days at home with me and our dogs by his side, as he wanted. I will always be so grateful for that. Silverchain continued their support for several weeks after Mark’s passing making sure that I was ok before signing off completely.

Lizz and Tracey continue to provide support and are the ones I brain-dump on. The feelings of helplessness, hopelessness, and utter loss felt when powerless to save a loved one are things that don’t go away quickly and can’t always be shared with family and friends. 

Jo Hughes

The Reflections team are pleased to support and care for people affected by mesothelioma. We’re mindful that there is life beyond the death of a loved one and we’re there to walk alongside.