Mark Hughes Foundation nurses provide 'holistic' care for brain cancer patients

That's where Brain Cancer Care Coordinator (BCCC) Nicole Allen steps in.

Nicole's role is to assist patients and their families in Port Macquarie and Coffs Harbour on a daily basis and make this devastating and difficult journey more bearable.

Nicole has been in the role for the past three years.

"It's a more holistic type of care coordination that I provide," she said.

"My role is about providing social and emotional support for patients."

The aim of the BCCC is to provide patient-centred care, advocacy, clinical advice, education, support, assess needs and make appropriate referrals and essentially bridge the gap between the patient and their specialists to ensure the complex needs of patients and their families are effectively managed.

The BCCC position is funded by the Mark Hughes Foundation.

"All patients will have some type of surgery, whether that be a full surgery or a biopsy, and then they are referred to our service," Nicole said.

"Then it depends if they need radiation, chemotherapy or if it's more of a watch and wait situation where they continue to have MRI's.

"Our service is about meeting the family face-to-face and getting to know them and identify what their needs are."

One of these patients is John Carrero, who is in his sixth and final week of radiation therapy.

John was diagnosed with a meningioma tumour in his frontal lobe in 2014.

"It was only diagnosed because I lost my sense of smell," he said.

"It was a really delicate area where they operated and some of the tumour was left behind which started to grow."

The only solution for John was to undergo radiation therapy. He attends the Mid North Coast Cancer Institute in Port Macquarie five days a week for treatment.

"It was quite daunting when I first started six weeks ago, but I'm used to it now," he said.

"This is my last week, I'm looking forward to finishing on Friday."

Mark Hughes, former Newcastle Knights and NSW Origin player and founder of the Mark Hughes Foundation, along with Mark Hughes Foundation Chair and Center Director Professor Mike Fay visited the Mid North Coast Cancer Institute on May 30.

They spoke with Nicole and brain cancer patients in Port Macquarie before visiting Wauchope Public School.

Mark and his wife Kirralee established the Mark Hughes Foundation in 2014 after he was diagnosed with brain cancer.

"We were very lost when I was diagnosed and we didn't know where to turn to and it was confusing," Mark said.

"It was a tough place to be."

The role of the BCCC was established because Mark and Kirralee wanted to provide further support for patients.

"We needed to help by providing some angels that could be by people's sides in what is a tough time in your life," he said.

"We started the Mark Hughes Foundation Care Nurses and we knew the Mid North Coast needed help and we found Nicole and couldn't be happier with the work that she's done."

Nicole said having Mark and Professor Fay visit patients helps "boost morale".

"It gives them a visual of who's funding this position and shows them that the foundation does really care," she said.

"It brings hope and awareness to brain cancer in the regions."

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