ANTHONY Ellison decided after receiving his diagnosis of stage four colon cancer that he wanted to "grab the bull by the horns" and do everything in his power to improve his health and prognosis.
"I hate waiting and just being a passenger to a process," said Mr Ellison, 41, a fitness coach who lives in Georgetown with his emergency physician wife Clair and daughter Olive.
"I've really tried to focus on controlling what I can control and my diet and my exercise [to help the chemotherapy be as effective as possible], but also getting second opinions and trying to get the best care possible, because when you get dealt a rough hand like a terminal illness you lose control of your life and you want to try and wrestle back some sort of control."
Mr Ellison's determination to have choice and control over his health extends to the end of life process. He said he is all too aware he shouldn't have to be having difficult conversations about death in his early 40s, but has been sharing his story and lending his support to the voluntary assisted dying draft bill that Sydney MP Alex Greenwich plans to introduce to state parliament in August.
"I'm a realist," Mr Ellison said.
"I realise I've got a terminal illness, I'm not going to live to old age, I don't get that benefit, but I'm going to continue to fight as long as I can.
"It's just handy to know that when the battle is done [the bill] provides relief for me and my family, knowing I still have options in my last days."
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Mr Greenwich sent the draft bill - which Lake Macquarie MP Greg Piper co-drafted and is co-sponsoring - to all MPs on Monday. He said many had indicated their willingness to co-sponsor it, including Newcastle MP Tim Crakanthorp and Charlestown MP Jodie Harrison.
Mr Greenwich said the bill followed discussions about the need for reform with constituents and first responders, who are often first on the scene after a terminally ill person in pain dies by suicide or attempts suicide.
"In NSW we should be able to do better than this, we should be able to provide people with peace and dignity, to let them be surrounded by their loved ones, to let them have some control and be treated with some compassion," Mr Greenwich said.
Other states have similar laws in place.
The bill limits voluntary dying to people with at least one terminal disease that will cause death within 12 months for neurodegenerative conditions and within six months for other conditions.
The person must be experiencing suffering that cannot be tolerably relieved, have decision making capacity and be acting voluntarily and without pressure or duress.
No hospitals, facilities or doctors would be forced to participate.
Two doctors would have to sign off on the request and would be trained to look for signs of coercion.
Mr Piper said he had been part of previous attempts to introduce reforms, but these had failed because some parliamentarians had let their religious beliefs outweigh the wishes of the majority of their communities.
He said surveys showed about 80 per cent of NSW people supported the terminally ill having the right to assisted dying.
Mr Piper said the bill had strong safeguards around access, administration and exemptions for health professionals with conscientious or faith-based objections.
Mr Ellison said the bill would give terminally ill people not only choices, but peace of mind and dignity.
"When it gets to that point I want to be comfortable and have choices, not feel like again I'm a passenger on a pathway towards an end of life," he said.
"As a human being that's the way I've led my life, I've made choices - some good, some bad - and it's a pretty important right to have that.
"To be in your most vulnerable position at the end of life, when there's so much emotion around your relationships and your family, you just want to be able to have a choice of making a decision that is easiest for not only myself but my wife and extended family to deal with. That gives me comfort."
Mr Ellison said he is conscious of the memories his daughter Olive - who is five and for who he has been the primary carer - is forming of him, saying he wanted her to remember him as being active and involved. He was not able to have visitors when recovering from surgery in Sydney last year, which was difficult but also a blessing.
"She was not able to see me in bed," he said.
"I lost almost 10 kilos and on a 70 kilo frame to be down at 60 kilograms is not pleasant, I looked really gaunt and unwell.
"I was able to recover for almost two weeks at my parents' place in Sydney before coming back and seeing Olive ... my whole focus on recovery was to get back to being the active dad and running around while she rides bikes and throwing the frisbee, and I've got back to that point, and that to me is creating memories and being present on holidays."
Mr Ellison said when the family travelled to Cabarita Beach two weeks ago he felt ill in the car and had to stay close to the bed and couch.
"That's when it really hit my mental focus, I said I'd love to be out there but physically I can't, I don't have the energy to do it," he said.
"I don't want that to linger, I don't want to perish for nine months and Olive's memory to be nine months of healthy dad and nine months of dad was sick and having to go through that.
"If this dying with dignity bill can offer me some more months and more time where I'm present with my daughter in a meaningful way, that to me is worth everything."
Mr Ellison went to his GP almost two years ago about his bowel habits.
He was found to have stage four bowel cancer, plus more than 20 metastases in his liver, and started palliative chemotherapy.
"I had eight rounds of a pretty aggressive regime and had a really good response thankfully, enough for my oncologist to at least entertain the idea around surgery," he said.
"There was no-one locally who was willing to do the surgery because it was too high risk, so I went down to Sydney and got knocked back a couple of times and finally got a liver surgeon who does liver transplants at RPA and Chris O'Brien Lifehouse."
He had 75 per cent of his liver and 17 metastases removed. The other growths were treated.
He then had 30 centimetres of his large intestine and the primary tumour removed and three more months of "mop up" chemotherapy.
Scans were clear until this May, when cancer was found in his liver.
He will start a fourth round of chemotherapy on Tuesday and have more scans next week.
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