A voice of reassurance
In 2010, after a long career working as an engineer on planes and trains in England, Trevor moved to New Zealand with his wife, Pat. The couple spent the first year living with their daughter’s family before eventually buying a parcel of land and settling in Warkworth.
Life looked very different from the one they had left behind. Retirement allowed them to slow down and enjoy the simple things. Mornings often began with sheep grazing outside their window and ducks from the nearby pond tapping on the glass at breakfast time.
But in the midst of their idyllic new life, Trevor’s health started to decline. In 2015, he underwent surgery for bladder cancer, followed by a second operation the following year when it returned.
Fortunately, the cancer remained in remission after that. But in October 2018, Trevor noticed something was off again.
“I was just feeling really rough,” he recalls. “I’d go out the front door and start walking, and I couldn’t even get to the top of the hill.”
Concerned by his lack of energy, Trevor visited his GP.
“I said, ‘I don’t know what’s wrong, but I’m just feeling really lethargic and tired.’ She did a good check-up and said, ‘Do you know you’ve got a lump in your neck?’”
He was sent across the road for a scan. Later that same afternoon, his GP called to tell him it looked like cancer.
Over the following weeks, the lump in Trevor’s neck grew rapidly, from the size of his thumbnail to the size of an orange. Three biopsies eventually confirmed a diagnosis of follicular lymphoma. Eight weeks after first seeing his GP, he began six rounds of rituximab and bendamustine treatment.
“I was fine for the first three doses,” he says. “Then on the fourth dose, I had a temperature spike.”
Trevor was admitted to hospital and started on antibiotics. The same thing happened during his fifth round of treatment.
“Then before the sixth lot, the consultant came in and told me I wasn’t actually getting any bugs, I was just intolerant to the chemo – but they were going to give it to me anyway!”
Despite the setbacks, Trevor completed treatment and gradually recovered. It took another six or seven months for his blood results to return to normal.
“But they said, ‘If it’s worked, you’ll get a good six years in remission.’ And believe it or not, six and a half years later, I got out of bed one morning and had pains all down my side, and a tight feeling across my chest.”
Because it was early December, Trevor decided it was best to get checked before Christmas. He visited his doctor and had a blood test.
“20 minutes later, the doctor came back with the results of the blood test and a letter, saying, ‘Take this to the hospital – and I suggest you take an overnight bag.’”
Trevor and Pat assumed his heart was playing up. But the next morning, after an X-ray and CT scan overnight, he was told he had a large tumour. “It was six and a half centimetres in diameter, 19 and a half centimetres long, and was wrapping itself around my aorta,” Trevor says.
He was told that he would need to start treatment on December 30th. “We’d thought eight weeks to starting treatment was quick the first time, but this time it was only three weeks!” he says.
Trevor underwent six rounds of R-CHOP, each three weeks apart.
“The side effects of that, compared with the previous lot, were quite a nuisance,” he says. “This time, my hair did fall out, including my beard and my eyelashes. I also had nausea, and it lowered my blood pressure.”
But more than anything, Trevor found the fatigue difficult to adjust to. Having never been someone who slept during the day, regular nana naps soon became an essential part of his routine.
Throughout both diagnoses, Trevor and Pat have drawn strength from the support of family and friends. They have also found encouragement and connection through Blood Cancer NZ’s support group in Orewa.
“The first time I got lymphoma, I’d started chemo in December, and we went to our first meeting in February. I introduced myself and said that I’ve got follicular lymphoma and I’ve just had my first round of treatment,” Trevor recalls.
“There was this old guy sitting across the room, and he could probably tell I was a bit down, and he said, ‘I’m 84, I had that 17 years ago, and I’m still here.’ And that was the biggest perk, because I thought to myself, ‘Well, if he’s been here for 17 years, I really haven’t got to worry.’”
For Trevor and Pat, that moment explains why they have continued attending the group all these years. As much as they value hearing from others who understand what they are going through, they also know that Trevor can now be that source of reassurance for someone newly diagnosed.
Now, nine weeks after completing R-CHOP treatment, Trevor is waiting for a PET scan to confirm whether his cancer is in remission. In the meantime, life is beginning to return to normal. He’s back in the garden, keeping the neighbours supplied with fresh vegetables and sharing homemade jams, pies and pickles.
“The secret is positivity,” Trevor says. “You can either lie in bed and say, well, I’ve got cancer, and that’s the end of it. Or you can say bugger this – I’m going to get through it!”
