Gretchen Irvine spent more than a decade helping the palliative care sector do its best work. Now she's navigating the system from the other side.

There is a moment, early in any conversation with Gretchen Irvine, where you realise she is not going to let a brain tumour have the last word.  

She is describing her first session of radiotherapy – the mask bolted to the table, her head locked in place, the machine humming above her – and she pauses. “When we got to the end of the first one,” she says, “I was like, right, who was driving?” She’d turned to the radiation therapist and asked if they could make laser sounds while they blasted radiation into her brain. Pew pew pew. At her next treatment, they did. It was, she conceded, a bit half-hearted. “So I said, well, can I at least have Star Wars music?”  

Gretchen got the Star Wars music, and she’s had it through every treatment since.  

This is Gretchen all over. Precise. Articulate. Funny. Unafraid to speak her mind. Utterly herself, even now.  

For more than a decade Gretchen has been the National Partnerships and Events Manager at Palliative Care Australia, the person behind events like the Oceanic Palliative Care Conference (OPCC), the Southern Hemisphere’s peak gathering for people working in the field. It is, as she describes, a job that lives in your head. The logistics, the relationships, the thousands of things that have to come together, precisely and all at once.   

But what Gretchen loved most about it wasn’t the machinery of it all. Instead, she says what she’s most proud of is what these conferences made possible for the people who came. “If what I can do every two years is provide them with more education, boost their energy and enthusiasm, give them the opportunity to create new networks,” she says, “then that’s worth every little bit of effort it takes.”   

She was at the helm of the Oceanic conference as recently as September last year. A few months later, everything changed.  

Most people facing what Gretchen was about to face wouldn’t have her map of the territory.  

It started with her vision. In early January, Gretchen noticed something was off while driving. Her peripheral vision wasn't right. Things she should have been able to see, she couldn't. Her doctor had recently changed one of her medications, and vision changes were a known side effect, so she didn't immediately worry. But when it didn't resolve, she saw an optometrist, who confirmed there was nothing wrong with her eyes and sent her urgently to hospital for a CT scan. An MRI followed. Then another.  

What they found was a tumour sitting in her optic chiasm, the point where the optic nerves cross. The decision was made to do a craniotomy; a biopsy where, as Gretchen explains it with characteristic precision, they slice across your hairline, fold half your face forward and half your face backward, remove a piece of skull, and use existing channels in the brain to take a tissue sample. She came out of six-and-a-half hours of general anaesthetic to find her son and sister doing a crossword puzzle, and supplied the seven-letter answer she’d overheard them pondering. “I think that made everybody feel much better,” she says with a laugh.  

The results took weeks. First locally, then sent to Royal Prince Alfred Hospital in Sydney for genomic and molecular testing. What came back was unambiguous. Gretchen had an astrocytoma. A rare glial tumour lodged in her optic nerve, inoperable because of how deeply it had threaded itself through the structures of her brain. Without treatment, she was told, she had about four months. With chemotherapy and radiotherapy, more like one to two years.  

Not long after surgery, Gretchen lost her sight completely. It happened faster than anyone could have prepared for. Faster, even, than she fully registered at first. “You don't really realise that you've actually gone completely blind until someone asks you specific questions,” she says. In the space of about a week she went from still being able to make out a face if someone came close, to nothing at all. “Even when I have my eyes open, it’s completely black. One day I realised I was completely blind.”  

Now about halfway through her daily radiotherapy regime, driven each morning by her sister, Bronwen, who moved in to become her primary carer, Gretchen says the treatment is cumulative and exhausting. It scrambles her thinking, which, for a woman whose entire professional life has run on the ability to hold complexity together, that particular loss is devastating. “And then all of a sudden, not being able to hold anything in my head anymore,” she says, “that’s been very challenging.”  

With her sight gone, almost nothing about daily life remained straightforward. Getting out of bed. Putting clothes on. Bathing. Eating. Leaving the house each day. The things that had always just happened now required planning, help, and hands other than her own.  

For most people navigating a diagnosis like Gretchen’s, being thrust into the world of palliative care and working out how to get the help needed to adapt, is a system in itself.  

It was Bronwen who did much of the legwork on what would become the most consequential practical development in Gretchen's care: access to the NDIS through its Priority Access Pathway. 

Gretchen is one of a small number of Australians under 65 with a life-limiting illness who have been able to access timely, coordinated support. Her experience, what she's been able to get, and how quickly, is not typical.  

It’s estimated between 5,000 and 10,000 Australians under 65 fall into a gap in support each year: people with significant care needs who are ineligible for the NDIS, and for whom there are very limited alternatives. In some parts of the country, there are no at-home support options outside the NDIS at all. Some families rely on charities. Many receive nothing, and end up in hospital or residential care earlier than anyone would choose. Even with the Priority Access Pathway, outcomes vary and access depends on knowing it exists, and on having an advocate to help navigate it.  

Bronwen had already started down the standard community pathway, which is typically a cycle of forms, meetings to schedule and weeks of waiting just for an appointment, when a cancer specialist nurse suggested she contact the Peace of Mind Foundation, a national advocacy organisation. Bronwen says she was sceptical at first, having already tried several support services and found them, as she puts it, mostly an opportunity to repeat herself. But she made contact anyway.  

On a Friday afternoon, standing in line at a shopping centre, her phone rang. It was an advocate from the Foundation, calling to tell her she would take it from here. “She told me to stop everything I was doing, that I didn’t need to go down the community pathway anymore and that she was taking us down a priority pathway, that she would do all the paperwork.”  

“I couldn’t believe it,” Bronwen says. “I was like, what.. someone else is taking this load off me?” She cried, right there in the shopping centre.  

Over a two-hour call the following Monday, the advocate stepped through everything: Gretchen's diagnosis, her daily limitations, what a bad day looked like. She liaised with the hospital for records, pulled the application together, and lodged it by Thursday. A week later, Bronwen's phone began pinging with notifications. Nine days after the application was submitted, Gretchen's NDIS plan had been approved. The standard community pathway she had originally started down could have taken months.   

Bronwen says she hadn’t even known the priority pathway for people with Gretchen’s diagnosis existed. She’d gone in braced to fight for what her sister needed. The NDIS, as she’s seen it framed in the media, was a system looking to limit who it helped. What she found was the opposite. “What this priority pathway has shown me is that actually, it’s about what you need.”  

Though not without its own learning curve. The NDIS has its own language. Terminology Bronwen, who has worked in public policy, describes as opaque even to people who know their way around government systems. “It doesn’t use plain English, and it just takes a while to understand what it all means.” 

Gretchen’s plan includes up to six hours of personal support a day, overnight respite, and an equipment budget for things like a height-adjustable bed with a pressure-relieving mattress. Support workers who come each morning to help Gretchen shower and dress in time for treatment. They come in the afternoons too, which gives Bronwen a window to sleep, catch up on work, or simply to sit down.  

It’s support not only for Gretchen, but for her family too. “What it means is that I usually have at least another hour in my day,” Bronwen says. Without the support, she’d still be folding laundry at 9.30pm at night after getting Gretchen settled. There is someone who can sit with Gretchen and read her emails to her, help her navigate her phone, keep her company in the hours when the house is quiet. Someone to help with the small things around the house that accumulate into hours and a mental load that can’t be measured. 

Working in palliative care taught Gretchen what to fight for. Being a patient has taught her what that means in practice.  

Part of that, she thinks, is helping people understand what good palliative care can include. It isn't only the big formal decisions, like resuscitation orders and hospital directives. The small things, the ones that determine whether a day feels liveable, matter just as much. Things like wanting to go outside. Not being able to bear unnecessary mechanical noise. Hating the smell of nail polish. Wanting to be cosy, but not too warm.  

“When everything is uncomfortable and just not quite right," she says, "that's the point at which you go: what is there to live for? Because everything's a battle. Everything's a struggle.” Getting the small things right, Gretchen has confirmed from the other side, is the whole point.  

Recently, Gretchen needed something as straightforward as a catheter. Something that would make sleeping easier. A treating clinician had said no, citing infection risk. But when the issue came up again, a palliative care nurse said ‘you have a palliative care doctor now, why don’t you ask him’. They did and the answer was yes, without hesitation. He understood immediately that comfort and quality of sleep were legitimate goals in their own right.  

It proved a point they hadn’t been trying to make. “Don’t assume the answer is no when you haven't asked the question, or when you've only heard no from one person,” says Gretchen.  

“I want to live as well as I can for as long as I can,” she says. “And when I can't do that anymore, I want to be in charge of what happens next.” 

Gretchen has that now. Most people in her position don't.