“Jonas and I were married for 34 years. We were never expecting to face a diagnosis of pancreatic cancer – but who does?
We first knew something wasn’t right when Jonas complained of stomach pains. His skin was also coloured yellow, so we knew it was related to his liver. When he went to the doctor, he said, “I know exactly what’s wrong with you, you’re going to hospital.”
There was a blockage in his gall bladdera hollow, muscular sac in the pelvis that stores urine, and then they discovered something else we were not prepared for – pancreatic cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs.
Jonas was in Sydney when this happened, and I was at home in Tasmania. The doctor rang me and told me the news while I was on my way up to see him. I just cried.
The pandemic had just started, and travel was getting harder. Flights were starting to slow down, so I had to go by boat. I needed to get up there to be with him however I could.
They did a whipple procedureremoval of part of the pancreas (generally the head), the first part of the small intestine (duodenum), part of the stomach, the gallbladder, and part of the common bile duct; also known as a pancreaticoduodenectomy, which is where they remove the head of the pancreasa long, flat organ that sits between the stomach and the spine that plays a key role in digestion and blood sugar regulation, the first part of the small intestinea section of the gastrointestinal tract that recieves food from the stomach and absorbs the nutrients from food, also called small bowel, the gallbladder and the bile duct. It took him a long time to recover because he was so unwell; he was in hospital for six weeks.
When he finally got out and we travelled home to Tasmania, I pretty much had to take him straight back to hospital. I was unable to visit him because I had to quarantine for 14 days, which was very difficult.
When he got out, we met his oncologista doctor who specialises in the study, diagnosis and treatment of cancer for the first time, and then two days later he was back in hospital again – this time for 15 weeks. He had two different types of bloodthe red bodily fluid that transports oxygen and other nutrients around the body infections.
It was really hard not being able to plan ahead – we didn’t know what the future looked like.
We planned to go away so many times, but he kept getting sick or we ended up back in hospital. We had to take it day by day, we had no choice.
Jonas underwent chemo next, but scans told us the cancer had come back. He wanted to keep fighting, so our oncologist got us onto a treatment that cost $7,000 per round. Paying for treatment took all our savings away. We were saving up to put a deposit down for a house – that’s all gone now.
We were so relieved that the treatment was working well, but then it just stopped working, just like that. The doctor said we need to stop because the treatment is not doing anything now; the cancer had spread to the liver, and we need to think of other chemo which is palliative.
Jonas asked me to book the ship to the mainland, as he wanted to travel to Sydney to say goodbye to everyone. I didn’t know he was going to get really sick and pass away. I didn’t cancel the trip, I ended up going myself, and said goodbye to everyone for him. It was very emotional.
Cancer is not a thing you can prepare for. I think as a carer, all you can do is try to be there as best you can for the person. And take breaks for yourself.
I didn’t have any family or friends around to help, and Jonas didn’t want anyone else to see him how he was. I think for others, if you do have the offer of support, don’t be afraid to ask for help. You need it so you don’t burn out.
Our Specialist Cancer Navigator would always ring to see how we were going. He and Jonas had a great relationship. He helped us with food vouchers and fuel vouchers because we were struggling. RCA also helped us pay for a couple of the treatments, so Jonas had the best chance of surviving. After he passed away, his navigator rang a couple of times to see how I was going, just checking in to see if I was ok.
He was very good. RCA are very friendly, caring and understanding people. Very kind and authentic. Very genuine. I would recommend anyone facing a rare cancer diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results to reach out to them.
Our oncologist was the same, he didn’t treat any patient as a number. When we went to an appointment at 2pm, we wouldn’t see him until 5pm, that’s how long he took with every individual patient, talking and trying to help in every way. He was very good, too.
I knew he was going to pass away, and I thought I would be fine. But when it came to it, I wasn’t fine. But now, although I’m lonely, I can see a pinhole of light at the end of the tunnel. I know he went to a good place, and I will be happy again in the days to come.”