He describes the cancer as "a killer". For patients receiving standard care and chemotherapy, the median survival time after diagnosis for someone with glioblastoma is 15 months, according to the Neurological Foundation.

Hitting 24 months means Kooge is defying the odds. But he says questions of if treatment is working continue to linger.

"They just do [the treatment] in the hopes that it does work. There is never any guarantees of anything.

"It can be a really annoying thing to go through. You are interrupted, you are kinda going through a big rigmarole and you hope it works because that's four months of pain and pills and lying in bed."

The slow, routine nature of the public health system contrasts glaringly with the urgent need to rid the cancer from his brain, Kooge says.

That was on display when he had an MRI scan in Auckland this week which he says had been delayed by six weeks because of a shortage of staff.

The scan was intended to examine whether major radiation treatment Kooge had earlier this year for six weeks had any effect or if it was "just a massive waste of time".

While waiting for that answer, Kooge has to deal with the intense side-effects of the treatment months on.

"It can muck with your head… that brought quite a lot of problems. I was in and out of hospital with side effects and lots of severe things like migraines… Balancing a normal life, but also being not very well at the same time," he told Newshub.

"Not being able to do normal stuff, and that is still the case at the moment."

But radiation is just one part of a larger programme of care. There's also monthly chemotherapy with the subsidised drug Temozolomide on top of other medication.

"At the moment I am on really heavy medication to try and reduce brain swelling from the treatment and that medication is really hard to deal with cause it gives you severe insomnia. I haven't slept for five weeks straight.

"Your body is literally put through the wringer and you just have to deal with it."

Kooge says another drug - Avastin - which isn't funded by Pharmac, is said not to have the same "crazy" side-effects as Temozolomide. But it could cost tens of thousands of dollars every year, meaning it's not a viable option.

"It is not funded, and there are other people in New Zealand the same as I am, they are trying to fundraise it for it too," he says.

The White Matter Brain Cancer Trust says brain cancer costs more per patient than any other form of cancer, describing it as "highly debilitating" and often meaning other family members have to leave work to become caregivers.

Without private health insurance, Kooge uses a Givealittle page to try raise money. But it's not just the list of treatments and drugs that require cash.

Any money Kooge is donated or able to bring in with the small amount of work he can do here and there needs to go towards expenses like food and transport between appointments.

Everyday stresses and financial concerns don't just stop because he has cancer.

"The whole entire saga obviously costs money every day, like there is different medication, there is transport to the hospital, there is accommodation, there is just so much involved. You can't work as much as you normally can. It is a big well-rounded thing".

"It is really, really hard to keep fighting because you get really sick of it. You get so bored of it, it's not even funny.

"You get lots of attention from friends, which is love and all really good, but it's overwhelming and you kinda just want to be left alone a lot and do normal stuff."