'Living a double life': Michael Kooge's desire to not just be 'the cancer patient'

This article is part of a Because It Matters Newshub series.

There's no black and white to living with cancer. As Michael Kooge explains, it's a marathon riddled with roadblocks, a rollercoaster without an exit.

Having to constantly acknowledge his own brain cancer is tiring. Kooge says he's forced to regularly question his body and health, asking if exhaustion is just a side-effect of heavy medication - or something more sinister.

"Being on these pills right now, I do keep second-guessing, I do hope it is the pills that are making me feel weird," the Kiwi radio personality told Newshub. 

While he is coming to now know the signs of if something is going wrong, they're frightening, but necessary, questions. He has learnt that disease doesn't discriminate on age. It's not just the elderly who should query their bodies, he says.

"I think it is generally looking after your health and if something is wrong, if you're feeling weird or if you are hurting in some way, just be aware of your body.

"That is one thing I have learnt is just listen to your body. If you are feeling rubbish, something is going on underneath it all."

Kooge tries to not let what is going on below the surface affect his attitude or change the man people meet on the sidewalk.

Craving normality, Kooge doesn't want to be known to his friends and family just as the cancer patient but thought of as the fun, loving, voice artist, creative director and newsreader he is.

Michael Kooge.
Michael Kooge. Photo credit: Supplied.

The skin cancer diagnosis

There's a history of skin cancer in Kooge's family, but a lymph node extracted from his neck in 2012 wasn't initially thought to be cancerous.

"I had some pretty crazy surgery to take it out.... a lymph node that had blown up... it came back misdiagnosed a million times and they had to send it to a specialist in Boston and he was like 'it is suspected melanoma, treat it as melanoma'."

Working at The Edge at the same time, Kooge says it was an "intense" part of his life.

"It was a really hard time and I couldn't eat for a year because the radiation damaged the inside of my throat. I couldn't talk properly which was hard because I was the voice of the radio station."

His cousin, Jeff Paterson, who was suffering from melanoma, successfully campaigned for the drug Keytruda. But he died in 2016, without having the chance to benefit from it.

While Kooge has come out the other side of melanoma and had no issues with the condition since, he advocates strongly for regular skin checks, saying one may have picked up on his cancer before it evolved into a bigger issue.

"That would have definitely prevented what happened to me, if they found the one that started it.

"I go for regular skin check-ups every three months now at the Skin Institute. I used to get it through the public system. [But] GPs aren't specialised in skin checking at all. GPs are great obviously, but they don't really know what they are looking for."

Kooge still has moles removed to this day and recommends anyone who has irregular moles go see a private dermatologist. That isn't always cheap, but Kooge says it could be worth it.

Michael Kooge working at The Edge.
Michael Kooge working at The Edge. Photo credit: Skin Institute / Screenshot.

The brain cancer diagnosis

However, in June 2017, Kooge was diagnosed with glioblastoma - a form of aggressive brain cancer. A sudden and devastating moment, it came only a few years after overcoming melanoma and getting his life back on track.

"I found out when I woke up in hospital three days after having a massive seizure outside work in 2017. I woke up in Auckland Hospital and was in a coma, completely out to it, so it was as much as a shock to me as anyone else."

"There are warning signs like some people get severe headaches, but I didn't get anything. I remember when it happened, I was on the phone to mum, and I remember saying to her 'I think my brain is broken' and it felt like a rush of wind going through my head when it happened, like a breeze, and I just felt really confused and really hot and sweaty.

"The boss saw me that morning and he was like 'are you okay' and I said 'no I don't feel well' and I walked outside and I just fell over. So there was no way of knowing."

For the second time in his life, Kooge went from living normally to being the middle of a "tornado".

Kooge has always tried to stay positive.
Kooge has always tried to stay positive. Photo credit: Supplied.

Living two lives

Kooge now describes his life in two.

He's an ordinary person. Going on adventures with his friends, developing relationships and meeting up with family. A plain life "where you just do normal stuff".

"You live two different lives. You live a very normal life where you try to maintain all your friendships and your working and you try go travelling and you really wanna do normal stuff.

"But there is this other life you live that is pulling you in this other direction, it is saying 'hey, you're sick or you were sick' and it is going to come back at any time," he says.

The reminders of that double life are relentless, as are the side-effects of treatment.

"You go see the hospital, you see the oncologist, I take chemo once a month in a pill form, and I get a scan every three months," he says.

At the start of the year, Kooge undertook major radiation therapy for six weeks. The treatment, as well as medication afterwards, led to intense prolonged side-effects.

"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.

"It may not look like I go to the gym because I'm on awful pills right now that bring down brain swelling from radiation treatment I had at the start of the year.

"One of the side effects is weight gain, which is really annoying cause you lose your identity, especially when you work really hard at the gym."

He said his body was put "through the wringer" and he had severe insomnia for weeks.

"I have had run-ins with death recently. We had a pretty rough year this year because of my radiation treatment. It caused swelling on my brain which affected things like my left hand went numb and I couldn't walk properly. That was really scary."

Michael Kooge.
Michael Kooge. Photo credit: Newshub.

In a recent meeting with his oncologist, Kooge was told of "signs" he needs to watch out for as he passed 24 months since his diagnosis. 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.

While knowing what to look for can help him understand what side-effects need to be flagged with doctors, they also prompt him to consider his vulnerability - something else pulling him away from a sense of normality.

"Normality, when you don't have it, you crave it so badly. You just really want to be normal. You really want a quiet life where you don't have to think about any of this. It puts a lot of pressure on you personally, and your family and friends. It is really hard to watch people you love go through that."

He attempts to not let his condition interfere with his relationships with friends and family but also recognises it is a part of who he is. Again, he says he is living two lives. One as the cancer patient. One as the man he has always been.

But there's also the man he desperately wants to, and is on track to, become.

"I've had partners, which is hard because you feel that you can't settle down with anyone because you don't think they would ever accept you for all this. That is really difficult to get your head around. So you kinda have to accept that your life is always going to be different. That you are never going to be wanted," he says.

"Which sounds pathetic, because I have met people who have accepted me for this. Friends have been amazing, but they do disappear, which is scary. I have lost quite a lot of friends. 

"You feel guilty, too, that you have to act a certain way, that you have to be this cancer patient that people want you to be. They have this idea of what a cancer patient is and if you don't live up to that standard, they like to lecture you."

Kooge says it is similar to sexuality. People pigeon hole who they expect a cancer patient to be.

"If you don't live up to this kind of persona then you are not doing it correctly or properly or you're not worthy of being that.

"It is hard because it is none of their business. It is actually yours and your family's. It is your own personal journey. I tell myself that everyone is on their own personal journey."

Michael Kooge.
Michael Kooge. Photo credit: Supplied.

Debilitating cost

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.

The impact on his wider family, he says, is one of the hardest parts of having cancer.

"When you are faced with that situation it is incredibly hard. It is like bashing your head against a wall and it is incredibly painful, not just to you, but your family.

"Especially when they tell you something you didn't know, like they tell you they worry about your all the time. My poor sister, she was like 'I have been having chest pains for two years worrying about you'. That makes you feel horrible."

Sometimes he feels like he walks into a room and is a reminder of "pain" - a "dead man walking". But if you know Kooge personally, you'll know he'll light up the room with his fun, enthusiastic personality despite the stress behind his cheekiness and laughter.

'Unfunded in the public system'

The question of whether treatment is working is always lingering in the back of Kooge's mind. 

"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."

For monthly chemotherapy, Kooge uses the subsidised drug Temozolomide which he says has some "crazy" side-effects. But an alternative - Avastin - isn't funded by Pharmac, costing tens of thousands of dollars on top of the infusion process, meaning it's not a viable option.

"I might need it at some point, it's unfunded, it is very expensive," he told Newshub.

"That is very scary for someone in this situation because there is no support, there is no money. It is unfunded by the public system."

CANCER TREATMENT medicine, health and hospital
Photo credit: Getty.

In June, Australia's Pharmaceutical Benefits Advisory Committee (PBAC) recommended that Avastin - known technically as bevacizumab - be available to patients with relapsed or refractory glioblastoma under the country's Pharmaceutical Benefits Scheme.

"The PBAC considered that bevacizumab was associated with improvements in response rates and progression-free survival, and hence quality of life through control over deterioration and symptom management," the committee said.

Under New Zealand's Reciprocal Health Care Agreement with Australia, New Zealand residents visiting Australia are covered if they are having hospital care. They can access some prescription medicines under the PBS. Kiwi citizens in Australia permanently are eligible for the country's Medicare scheme.

Many Kiwis move to Australia for cancer drugs, and while Kooge says it's sad to have to say it, it's something he would seriously consider. 

"I am trying to tell myself that it is not off the cards for me, that I can live normally and obviously we have the agreement with Australia where they look after your health, so that is something you have always got to keep in the back of your mind.

"It is something I would definitely consider if it was available to me."

But despite the cost of drugs and the slow treatment process, Kooge says he has confidence in the New Zealand public health process, saying it's full of good people doing their best.

His biggest regret, though, is not getting private health insurance.

"Everyone should have private health insurance, that is one thing I really mucked up on. I know people going through cancer now who have private health insurance and they are getting everything laid on a silver platter for them.

"That is definitely the one thing I stupidly did not do. I remember being offered it when I was 19 and I was like 'nah I don't need that, the public health system will always look after me'.

"I am facing the Avastin thing, and that is paid for people who have private health insurance, or at least part of the cost is."

Michael Kooge.
Michael Kooge. Photo credit: Newshub.

Crowdfunding to survive

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. His father has also been diagnosed with cancer - an added pressure during a tough time.

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."

He says he recently loss two major roles due to the huge undue stress and employers often dance around the subject.

"I suppose cancer just scares people in different ways - and you know what, I can't own that - that's their problem. I've just go to pick up the pieces and try move on."

But he is also grateful for the support he has received from the likes of Leon Wratt at Mediaworks, who gave him his first big break and has treated him as family throughout his journey with cancer.

Live in the now

His advice to anyone with friends or family with cancer is to treat them like anyone else. 

"It's like sexuality and race. They are very normal people and they want respect and they want to be treated completely normally. Don't baby them, don't judge them or make them feel guilty," he said.

But Kooge also says that hearing about other people dying of cancer is also not helpful.

"I went through about five years of counselling with my first cancer, trying to deal with those kinds of things and those kind of people... you just get bombarded.

"Don't tell them stuff about relatives or friends who have passed away. That is something no cancer patient wants to hear... all of that stuff is noise and too much"

Kooge says he got through melanoma so he will keep on fighting this one.

"I have to remind myself you are in the now, it is happening now. I keep telling myself I am alive, I am in this room talking to you.

"If I am alive, I am supposed to be alive."