Toby

- Diagnosed with multiple myeloma

Toby's story

Everything just felt hollow

“My mum would drive me to my hospital appointments, and we’d go past the university. I’d see other people in their 20s, studying and hanging out. Meanwhile, I was here fighting for my life.”

In 2020, at age 22, Massey University student Toby began feeling unwell.

“I was really breathless, weak and throwing up a lot. I turned up at hospital to find out that I was running low on blood counts, and later learned that I had a plasmacytoma.”

The plasmacytoma required all kinds of tests, biopsies and finally, radiation. Afterwards, Toby felt well for a while, until three months later, when he had a PET scan and new tumours had shown up.

More surgeries and biopsies were booked, and that’s when it was confirmed that Toby had multiple myeloma.

“There was this song playing when we showed up at the hospital that I really like; Black Magic Woman by Santana. So I was thinking in my head, oh this will be a good time! But it wasn’t.”

“My doctor gave us the news, and…everything just felt really hollow. It was a big shock.”

By now, Toby had put his studies on hold, left his flat and stopped working. He moved back home to Wellington where his parents could support him through treatment.

“Every single doctor visit, my mum was in the room writing things down, and that really helped me out. She’d pick up on something that I missed, or vice versa.”

“It’s been a dream. As much as I feel like I shouldn’t be at home at my age, I think it’s been one of the best decisions.”

And Toby was also supported by Nicki from LBC.

“She was awesome. She met me one day at hospital and explained what LBC does. She pointed me to some of the online resources about blood cancer. As a student, I like to do my research on stuff, so I appreciated that.”

“She also offered me a TV card so I could watch TV in my room without having to pay for it.”

Toby has recovered well, and as of August 2022, he is tumour free. He’s grateful to be healthy, and back on track with his studies.

He’s back doing what he loved before – getting outdoors, going for walks and cycling. He’s also back studying, and has almost finished his degree.

“It’s just about changing your mindset.”

 

Fast Facts: Plasmacytoma

  • Plasmacytoma is a type of cancer that begins in plasma cells (white blood cells that produce antibodies)
  • When only one lesion is found it is called a plasmacytoma but may turn into multiple myeloma, and is often thought of as early multiple myeloma.