- Diagnosed with Non Hodgkin follicular lymphoma

Sonja's story

In 2009, Sonja White found herself dealing with enlarged lymph nodes all over her body. For 18 months, she went back and forth to her doctor who thought her lymph nodes were enlarged due to the constant infections she seemed to be having.

While seeing another doctor for an unrelated issue, Sonja pushed to find out more information about the lumps continually popping up.

After visiting a specialist and undergoing a bone marrow biopsy, Sonja was finally diagnosed with Non Hodgkin follicular lymphoma.

“Looking back, I realised I had been losing energy and the lumps were starting to get uncomfortable, but other than that I wouldn’t have known anything was wrong,” says Sonja.

Sonja was told she did not need treatment straight away, so she was placed on active monitoring. She underwent tests every three months.

“I didn’t actually tell anyone when I got the first diagnosis because there really didn’t seem any point when I wasn’t in treatment yet, and I was still working as normal,” says Sonja.

After monitoring her condition for 18 months, Sonja started treatment at Palmerston North Hospital. Every few weeks Sonja had treatment and says it was a sobering experience seeing others at different stages and watching the lovely nurses running around looking after everyone.

Sonja took leave from her job as a teacher to have her treatment and would sit in bed doing school reports and files trying to keep up with everything, but eventually she knew she couldn’t manage it.

“I didn’t want to leave work, but I just ended up with no energy so my lovely class had a relief teacher for the last two school terms of the year,” says Sonja.

Treatment went well and Sonja was eventually in remission, but she knew there was a chance she could relapse. Twenty months down the track, Sonja became unwell again. She was told her cancer was back, and tumours were growing in her abdomen. After nine weeks of one treatment, Sonja’s body didn’t respond well so she was given a different treatment.

After the second treatment, Sonja underwent a stem cell transplant which she says was a fascinating process, although it was not a great experience to go through.

“A friend of mine had a stem cell transplant so I had some knowledge going in to it which helped, but I still think the treatment is worse than the disease itself.” says Sonja.

“I lost 14 kilograms, all my hair and was a pale imitation of myself,” says Sonja.

Initially the stem cells refused to take hold and grow but after four months, and just in time for her daughter’s wedding, things progressed and Sonja felt herself getting stronger with the support of her husband David and her family and friends.

“David is a stoic, practical man and he ran around and did everything while I was recovering, while he was working full time,” says Sonja.

“I think it must be very hard for partners who go through this journey. I’m sure he was worried, but being practical was his way of handling things,” says Sonja.

After attending general cancer support groups, Sonja found it hard to find others who were also diagnosed with a blood cancer until she got in touch with Leukaemia & Blood Cancer New Zealand (LBC).

“When I attended my first LBC support group in Palmerston North, I walked in and the whole room was just buzzing! Then I was so pleased to find two other woman with the same blood cancer as me, and it was so great to know I could talk to them.”

Sonja decided not to go back to work full time and instead she spends her time volunteering at a local school, tutoring at a local adult literacy programme and cuddling her new granddaughter.

Throughout her treatment and recovery, Sonja met many different people on their own journeys and says there were others without family or transport or support like hers.

“I can’t complain because there are so many others going through tough life situations too,” says Sonja.

“Life still goes on no matter what you are dealing with, and you just have to go with the flow.”