Mum-of-two battles rare cancer

One of a kind: Natalie Souness is urging people to have any suspicious lumps on their neck checked
One of a kind: Natalie Souness is urging people to have any suspicious lumps on their neck checked

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.

The long-time Marlborough resident has made the move to Christchurch so that she can be closer to medical help after being diagnosed with an extremely rare condition that is a combination of a rare cancer and a rare blood disorder.

Compounding her fight is the fact that no-one else living in New Zealand has the condition, 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," Ms 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 aggressive surgery.

The surgery removed part of Ms Souness' vocal nerves as well as lymph nodes, and there was also a fear she would lose 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," she said.

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

Ms Souness worked as an advocate for victims of the Christchurch earthquakes, educating them on their rights and how to deal with the Earthquake Commission and insurers, she said.

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

Even though her treatment was in its early stages, Ms Souness was already looking to the future and how to help others.

"I have been living in Marlborough on and off for 25 years . . . I plan to go back and help with the earthquake victims in Seddon," she said.

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.

Being proactive was in her nature and Ms 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.

GIVEALITTLE - Fight with me

The Marlborough Express