Making memories together - Myeloma Australia

Written by Hope Weber, VIC

In 2023, my husband Trev, who was 50 years old at the time, was complaining of back pain and shortness of breath. Our General Practitioner (GP) ordered some scans and tests that showed lesions on his spine. We were referred to the Olvia Newton John (ONJ) Cancer Centre in Melbourne so at this point we knew it was some form of cancer.

We were waiting for our appointment when Trev experienced severe back pain, and we ended up in the emergency department (ED). Trev was admitted to the inpatient ward from ED for further investigations. I went back to work the next day and received a phone call with the news that Trev had been diagnosed with myeloma, a cancer neither of us had ever heard of! I was in complete shock. Being the ‘worrier’ in our relationship I wanted to know what the plan was and Trev being Trev with his ‘She’ll be right’ attitude was as strong and as positive as always. We were told that Trev’s myeloma was a very aggressive type due to the genetic mutations he had.

We have three children, two sons and a daughter who were all in their late teenage years at this stage. We have always been very open and honest with our children, but it was extremely hard telling them that their young, fit, healthy, Dad, who was the strong one in our family has an incurable and aggressive type of blood cancer.

From this point, treatment started straight away in addition to radiotherapy. Thankfully both of our workplaces were very supportive, and we were both able to reduce our working hours during this period. I was working Tuesday to Saturday, so I was able to take Trev to most of his treatment appointments which were on Mondays. On the days I couldn’t, Trev was still able to drive himself or family and friends would take him. My Mum also helped around the house which we were so grateful for. Even helping with small things can feel like a big weight off your shoulders, when so much is going through your mind. Our GP was also incredible; nothing was ever an issue, and he helped us with anything we needed. The team at ONJ were nothing short of amazing, in their care and professionalism. They kept us informed and offered every trial and treatment possible. Their care along with Trev’s positive attitude and humour despite it all helped make the harder days a little easier. His favourite saying was ‘Every day is a good day, but some will be better than others’.

We wanted to help spread awareness about myeloma and so we participated in Myeloma Australia’s ‘My Greatest Walk’ and volunteered selling pins at the Moonee Valley racecourse where Myeloma Australia was the fundraising partner for the Cox Plate Carnival. While Trev didn’t attend any support groups, he found it really helped talking to other people who were impacted by myeloma at these events.

Unfortunately, due to the aggressive nature of Trev’s myeloma he had many different treatments that would work well initially, but the myeloma just kept coming back. He had three stem cell transplants, clinical trials, and bispecific antibodies. Trev managed all of these treatments with the same courage, humour and fight that he had always had. In late 2025 Trev was planned to receive CAR-T cell therapy; we were waiting for his CAR-T cells to come back from overseas, but his myeloma was too advanced in the end for them to be re-infused. It was at this point that we were told that Trev’s battle was coming to an end. It was devastating.

Trev’s wish was to die at home and so with the help of the palliative care team, we were able to spend two months at home together as a family. He was still independent when he first came home, but we set up one of the rooms in our house that we had recently renovated into a sort of a hospital room with its own bathroom, and we hired a hospital bed. We had nurses from Melbourne City Palliative Care come out each day to see him, and initially I was helping to administer pain relief and medications. When Trev was first diagnosed, we were told to create a Will and appoint a Power of Attorney. This was very emotional and stressful at the time as he had just been diagnosed, but in hindsight it was a good thing, and I am glad we had completed all those legal documents early on. I was Trev’s Medical Power of Attorney, and I found it overwhelming sometimes to make decisions on his behalf when he couldn’t. I would always try to think ‘What would Trevor do’ and base my decisions on that. Towards the end when he was in and out of consciousness, we had nurses come and stay overnight. This allowed me time to just be Trev’s wife again and took the weight of also being his carer away; the nurses were amazing. Trev died peacefully at home with his family.

Trev loved BMX bike riding. We first met at a BMX track, and we had also renewed our vowels there one year before he died. When planning the celebration of his life, he wanted it to be at that same BMX track, and he got his wish. The celebration was too big to hold at the funeral home and so it was held at the BMX track. A trophy has been created in his honour at the BMX club awarded to the person who displays the values he stood for.

Trev had made a bucket list that would change depending on how well he was throughout his experience with myeloma. One of the things on that list was to do up an old car; this would keep his mind busy, and our two sons would help as well. He was always asking me to order car parts on Amazon, me knowing nothing about cars! One week before he died, he was able to drive that car.

It’s been only a few months since Trev died, and I have found seeing a grief cousellor through the palliative care service at the ONJ has really helped me cope.

We are still ticking off some of Trev’s bucket list items as a family, even though he is no longer with us. To Trev, his family was his life, and he wanted us to keep living, to keep making memories. That’s what he was all about.