It was January, and three days earlier, the British Army veteran and after school care coordinator had turned 68 - surrounded by his loved ones and cherished dogs at his Ellalong home.

A mattress had been pushed up against his bed so that his wife, Tricia Ellerbeck, could stay beside him as he succumbed to an aggressive and devastating brain cancer.

"We had four-and-a-half months from the point of diagnosis to the day of passing," Mrs Ellerbeck said.

"Time was precious. I didn't let things side track me, I didn't think beyond the end. He was so brave. That allowed me to be brave."

Severe, ongoing headaches had prompted Mr Ellerbeck to see a doctor towards the end of last year.

Subsequent scans revealed a 4.5 centimetre brain tumour.

"We were waiting for about a month to find out the results and, sadly, he had a glioblastoma multiforme - brain cancer - Stage 4," Mrs Ellerbeck said.

"So, no cure, and a pretty poor prognosis. Time frame anywhere from two-to-four months, potentially up to 12 or 14 months with treatment and everything crossed.

"We knew from the very beginning it was going to be a poor outcome, and we made a decision very early in the piece to make the most of every moment that we had. To take the treatment that was on offer."

But despite the devastating diagnosis, Mr Ellerbeck found some hope.

Perhaps not for himself, but for others facing a similar fate in the future.

"Michael was very keen to try to make something good come out of the sad circumstances," Mrs Ellerbeck said.

"We were introduced to the work of the Mark Hughes Foundation (MHF) and their Brain Cancer Biobank, and Michael immediately signed up and offered his assistance."

It was Mr Ellerbeck's wish to donate his brain to the biobank for cancer research - a gift that would provide researchers with valuable insight into how cancers grow and spread in the brain, and why they are so difficult to treat.

"In among all of the trauma of the circumstances, we both wanted to try to make some sense out of it, and this seemed a really logical, positive thing to do," Mrs Ellerbeck said.

"I look at it as though our body is a shell, and once our soul - our spirit - has moved on, what is left is so valuable if it is saved in time for others.

"His thought was if he could leave a legacy that could help people in the future, then something good is coming out of his awful circumstance."

Mr Ellerbeck's decision meant that immediately after his death, he would have to be transferred to the John Hunter Hospital for the delicate donation process.

"They still gave me the option to back out. Because sometimes, in the circumstances, it could be really confronting. But I wanted to do everything I could to make that happen and to honour Michael's wish," Mrs Ellerbeck said.

"Michael and I had 20 years together. It was a loving, happy relationship. We crammed an awful lot into those 20 years - rescuing dogs, building houses, renovating homes, travelling. He had been married previously too and when we found each other it was like everything disappeared, it all paled into insignificance.

"As far as deaths can go, he had a good death. We were holding hands, right up to the very end. I was there when he took his last breath.

"It was five months ago now. A blink of an eye, but an eternity at the same time."

With the Beanies For Brain Cancer NRL round underway this weekend, Mrs Ellerbeck said she hoped people would consider supporting the MHF's important work.

"If Michael's gift can help to further the knowledge of our academic peers and help them find ways to slow it down, or identify it earlier, I think it is of huge benefit to mankind," she said.

"Research is the only way we will ever get a cure."

CASEY Miller was 23 years old when she began getting persistent morning headaches and nausea.

She was working as a neonatal nurse at the John Hunter Children's Hospital at the time.

"I went to the doctor because I vomited at work, and I had some blurred vision," Ms Miller said.

A CT scan, then an MRI, came back as "abnormal".

She had a brain tumour - a glioblastoma. Ms Miller was referred to a neurosurgeon for a biopsy, and underwent radiation.

Until May last year, she had been in remission.

"I relapsed and the tumour was a higher grade. It is now grade four," she said.

"From the time I was diagnosed, I knew it was highly likely I was going to relapse. And even though a lot of people kept telling me to think positive, unfortunately, positivity doesn't cure brain cancer."

Ms Miller said in the five years she was in remission, she found it difficult to make plans for the future.

"Even if you wanted to buy a house, or get a loan, or have children," she said. "Having brain cancer has restricted a lot of things I can do.

"It has given me impairments which have meant I couldn't go back to nursing, but it is important to me to be able to contribute, and I am so grateful to the Mark Hughes Foundation for the opportunity to donate my brain to cancer research.

"It won't help me, but it could help someone else.

"The way I think about it, I know this sounds a bit gory, but when you're dead you are either going to get cremated or buried anyway, so it may as well go to good use."

Ms Miller has moved to her parent's property near Port Macquarie.

For her 30^th birthday, her dad used his tractor to move their outdoor dining setting to a nearby hill so the family could enjoy a special picnic together.

Ms Miller doesn't know how much time she has left, but is making the most of it.

"Generally the statistics are pretty poor. But I have responded well to the chemotherapy and they weren't expecting that," she said.

"That is another reason why research is so important.

"The doctors can only go off the statistics. No one is a fortune teller. And every patient is different."

Ms Miller adores animals. She has swum with dolphins, played with meerkats and emperor tamarins at the zoo, and has been surrounded by dogs, cats and horses on her parent's farm. She has also become an advocate for people with brain cancer, brain injuries and disabilities, lobbying for more rights and better access to housing.

She was grateful to the Mark Hughes Foundation Brain Cancer Care Coordinators "Sandy and Alisha", who helped her manage appointments, medications, and who went in to bat for her if she had a problem.

"I know there are a lot of charities that need money, but the truth is, research for brain cancer is not cheap, and you can see where the money goes with this one."

CASSANDRA Griffin, the manager of Hunter Cancer Biobank based at HMRI, said the whole brain donation program was inspired by patients, and driven by patients.

She feels privileged to work closely with them and their families to ensure they understand what is involved in donation. Her phone is always switched on, as she never knows when she will receive a call that a potential donor has passed away.

Brain donation is delicate, and time-sensitive. But the people Ms Griffin got to know through the program tended to feel empowered by their decision.

"There comes to a point where there is not a lot they can do," she said. "They can't fight back any further against the cancer, but they feel that this is a way they can fight back. It's a decision they get to make, to take matters into their own hands and do something for the greater good, and I think that is quite empowering for a lot of patients. Programs like this are at the forefront of what is going to get us to a breakthrough and make a difference in people's lives."

Ms Griffin said it was because of people like Mark and Kirralee Hughes that brain cancer was getting the attention and awareness it needed to create change.

ASSOCIATE Professor Paul Tooney, of HMRI and the University of Newcastle, said brain cancer was different to other cancers in that researchers rarely got to see the whole picture.

But being able to see the tumour, in its natural surroundings, would offer "incredibly valuable insights" to help improve the outcomes of brain cancer patients.

"When somebody has a mole that has turned into a melanoma, the doctors are able to cut out that mole and some of the surrounding skin too, so when the pathologist looks at it, they can see whether they got it all," he said. "But you can't do that with brain cancer. All of the different parts of the brain have a defined function, so the surgeons have to be careful to take as much of the tumour as possible without damaging the nerve cells in the normal tissue.

"It's not like other cancers where we can take more tissue if we know we haven't got it all, and once is recurs, it becomes quite aggressive and quite treatment-resistant and there are very few options. Having this incredible resource might allow us to understand it more."

Associate Professor Tooney said thanks to fundraising efforts from organisations such as the McGrath Foundation, there had been "huge improvements" in the survival rates of breast cancer.

"Unfortunately survival for brain cancer hasn't changed a lot in 20-to-30 years, and the treatment hasn't changed since about 2005," he said. "We need more research to come up with better treatments and better strategies.

"The beanie campaign Mark has fuelled has done enormous things.

"The MHF funds the Brain Cancer Biobank here at HMRI, and they are collecting blood samples used by researchers like myself to come up with better strategies."

Click here to buy a Mark Hughes Foundation Beanie for Brain Cancer

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