Tracy Barr-Smith is looking forward to celebrating her 50th birthday. Photo / George Novak
Tracy Barr-Smith is looking forward to celebrating her 50th birthday. Photo / George Novak
It has been a rollercoaster of a year for Tracy Barr-Smith, filled with euphoric highs and devastating lows.
The terminally ill 49-year-old led hundreds of cancer patients to march on Parliament in October 2018, presenting petitions calling for better access to life-prolonging treatment subsidised in other countries.
Barr-Smith opened upto the Bay of Plenty Times about her journey with Stage 4 metastatic breast cancer and her struggle for a treatment that could give her more time.
In March, she spoke to the Health Select Committee about her plight, highlighted by the fact erectile dysfunction drugs had a higher priority in Pharmac's funding system than the treatment she was asking for.
"So many people came up saying they had no idea," she said.
Barr-Smith is known as a "Metavivor" - an amalgamation of her terminal diagnosis and "survivor". Since the Metavivor march, petitions (with more than 30,000 signatures) and verbal submissions, the Government announced funding for several key cancer treatments including life-prolonging drug Kadycla, which cost cancer patients about $10,000 a month.
Tracy Barr-Smith: "We are doing this not only for ourselves but for everyone who comes after us." Photo / George Novak
The news was great but also "really sad".
"It's frustrating that a group of patients have had to come together while they are really unwell to fight for change when they should be able to spend their energy on getting well," Barr-Smith said.
Barr-Smith said the past year had been incredible in its extremes.
"It's been a real, real rollercoaster of incredible highs and almost euphoria when you get news that our drugs are coming through - huge euphoria - but that's always cut back by somebody who's passed away that the news has come too late for them.
"You get angry that it didn't happen earlier for that person."
Barr-Smith has lost count of her fellow Metavivors who have died during the past year. The Metavivors are a group of people living with metastatic breast cancer. Their name is a play with the word survivor.
"We've lost a lot of young mums over the year. Women in their early 30s. Those are the hardest to get over."
Tracy Barr-Smith (right) and fellow Metavivor Sue Wall-Cade (pictured in December 2018) are fighting cancer, and the system. Photo / File
Barr-Smith is now focusing on wellbeing. She's started working again - part-time - her short hair has grown and she's looking forward to some key milestones such as celebrating her 50th birthday.
But the fight isn't over. Barr-Smith plans to attend a petition to Parliament in March calling for a reform of Pharmac and a doubling of the Government agency's budget.
"We are doing this not only for ourselves but for everyone who comes after us, for those who don't think it will ever be them. As we know, things change and the next thing you know, you are one of those people who needs the drugs."
"I'm very thankful and grateful for waking up in the morning."
Barr-Smith is living life as full as she can, despite the unknown of what life looks like beyond three months ahead.
"I'm just trying to just keep the positive momentum going. But there are also some reminders. Right now I have sore ribs but I'm pretty sure that just from overstraining," she said.
"I'm doing things that make me happy and keep me healthy.
"I'm very thankful and grateful for waking up in the morning."
Tracy Barr-Smith, pictured shortly before a march on Parliament in 2018. Photo / File
