Mum-of-two battles rare cancer

NATALIE SOUNESS: Also an advocate for quake victims.
NATALIE SOUNESS: Also an advocate for quake victims.

Suffering from cancer is one thing, but being the only person in the country to suffer from an extremely rare form of the disease is another, says mother-of-two Natalie Souness.

Souness has moved to Christchurch from Blenheim to be closer to medical help. She works as an advocate for victims of the earthquakes, educating them on their rights and how to deal with EQC and insurers.

She is the only person in New Zealand diagnosed with a combination of a rare cancer and a rare blood disorder. It's called sclerosing mucoepidermoid carcinoma with eosinophilia [SMECE].

"I haven't been able to make contact with anyone else who has it or even find any personal documents like journals or accounts from survivors," Souness said.

She was diagnosed late last year after having a lump in her neck examined in November.

"I've had hyperthyroidism since I was 17 and when I got this lump in my neck in about October I didn't think much of it because I felt perfectly fine, but after six weeks I had it checked at my doctor in Blenheim," she said.

She was referred for scans and a biopsy, and after preliminary results, doctors recommended immediate surgery.

The surgery removed part of her vocal nerves as well as lymph nodes. She risked losing the ability to speak. Despite this, she refused to lose hope and went into surgery with a positive mindset.

"I was obviously a little shocked, but there wasn't even a diagnosis yet and I stayed positive," Souness said.

"My main worry was not being able to communicate afterwards."

Luckily, she came out of the surgery still able to talk, although she did find it difficult.

Further treatment would involve harsh radiation and a tracheostomy because of the swelling caused by the treatment.

This would also result in temporary loss of speech.

Souness was doing her best to make contact with specialists around the world, while keeping active in her advocacy work.

She has also got on board with the Thyroid Association of New Zealand and planned to be at the forefront of their awareness and fundraising campaign this year.

"I guess one of the big lessons out of this is that if you have a thyroid problem and you get a lump in your neck, or even if you are perfectly healthy and get a lump in your neck, have it checked," she said.

The Marlborough Express