- Diagnosed with multiple myeloma

Nichola's story

Nichola Oakenfull’s journey with blood cancer started like so many others, with seemingly unrelated and vague symptoms. For about two years, she struggled to piece together the medical breadcrumbs that would lead her to a myeloma diagnosis. She experienced extreme fatigue, headaches, shortness of breath, pins and needles in her hand, and chest and back pain throughout her path to an answer. She had been in touch with her GP, who didn’t dismiss her symptoms and sent her to a couple of specialists, but she was told she was just a busy 40-year-old mum. While no news is usually is good news, Nichola knew something was wrong with her body.

“I thought that I was going crazy and that I must be a hypochondriac. I had all these things that you can’t make up. But they couldn’t find anything, so I had been seeing a psychologist to try and make myself stop thinking that I had cancer.”

It was after a back injury in October 2019 that Nichola’s back pain got much worse.

“I couldn’t move for a couple of days and then went to physio. But with physiotherapy, it got better really quickly, it improved, but then plateaued.”

After family illness forced Nichola to take time off work and travel to Hawke’s Bay, she had to stop going to physiotherapy.

“Then, in March last year, I tried running to pick up my little boy from athletics, and I couldn’t run. It hurt too much. That was the Monday, and then on Thursday, I was at the supermarket, and I sneezed, and I couldn’t move.”

Once she had healed enough to go to physio, the therapist thought she had a slipped disc. Again, the physiotherapy helped, but two weeks later, the country went into lockdown.

“My haematologist said that she would have been helping to relax all the tense muscles during our in-person sessions by massaging them. So then during the lockdown, when I wasn’t getting that, the pain got progressively worse.”

After the lockdown, the physio asked Nichola to get an x-ray of her back. This imaging showed that her back was broken, but there was a suggestion it was an old fracture. Simultaneously, she went to visit her GP for a long-lasting sore throat.

“I asked my GP to clear me to go to physio and asked her about my back. She said that she disagreed the fracture was old. ‘A 41-year-old doesn’t get a compression fracture for no reason.’”

Her GP ended up ordering more tests, which included an ultrasound due to extreme abdominal pain.

“I had an ultrasound and blood test on that Friday, then I saw on my “Manage my Health” page on Sunday that the ultrasound had come back clear so I thought I was okay. But then, on the following Monday morning, my GP’s nurse called first thing. She asked if I could go for another blood test that morning.”

Later that day, her GP called her in and told her that she needed to see a haematologist.

“I saw the haematologist the next day. He said that there was a chance that my broken back showed up as inflammation, but he thought it was more likely than not Multiple Myeloma. Two weeks later, after an MRI and bone marrow biopsy, I was diagnosed. I’m so grateful that my GP took all of my symptoms seriously, which led to my diagnosis.”

Nichola says that she has had many touchpoints with LBC and values the Wellington team’s support of her and her family. She has participated in various services, including the Ladies Zoom support group, the Wellington Myeloma and haematological support groups, Kids’ Club for her now seven-year-old son. She was also grateful for the webinar series put on last year.

“The webinars were great because there was one on managing side effects of treatment. That was literally like my first or second week of chemo, and was really useful.”

Today, Nichola holds hope in the future of myeloma treatment, including clinical trials.

“The money that LBC gives to research, like the Malaghan Institute’s CAR T Cell trial, is significant. While that is for lymphoma patients, eventually, we may have Myeloma CAR T Cell trials or other similar treatments. I may not be gaining anything from it now, but maybe I might someday.”