Māori men with prostate cancer are 50 percent more likely to die than non-Māori.
Part of the problem, says a new study, is that many Māori men are left to figure out the cancer journey for themselves.
AUT Associate Professor Jacquie Kidd (Ngāpuhi), who co-led the Movember-funded kaupapa Māori research project, says the research shows structural racism at play.
Here, some of the men involved in the study describe their journey, from their first symptoms through to sex after treatment.
Their kōrero is taken from interviews with 15 different tāne who shared their experiences in the hope that: mā kōrero ka ora — their talking will save lives.
I’d go fishing and I knew where all the piss stops were along the side of the road.
What was bad for me was that I went to the toilet sometimes four or five times a night.
I remember driving home on my train and just all of a sudden, as I was going through the tunnel coming back, I had to stop my train, climb out and I had to relieve myself. That’s the moment that I said: “This is enough.” I got back and I told my boss.
I was out fishing with my son and his partner and said I was having trouble going to the toilet. My son’s partner asked me if it hurt when going to pee, and when I said yes, my son told me to go see a doctor.
I was driving home and thought, oh well, I’ll come through town, because I needed to fill up at the BP there, so I said to myself: “Yeah, I hadn’t drunken a lot of water. I should make it to the BP.” But the fucken door! Someone was in there! And so, I thought: “You know, if I’m gonna piss myself, I’m gonna make sure I’m in the car, just myself, and out of there.” So, I hopped in the car and took off.
Ia pō, ia pō, ka huri au ki te mea, te wharepaku. You know, ia rua hāora, every two hours. Ka haere au ki tēnei nāhi, puta noa iho ki taku nei mimi, eh? Puta noa iho – short and I thought ahh. Ka haere tonu tēnei mō te wā roa, so ka haere ki te kite te tākuta.
I am ex-army, so I always used ANZAC Day as my “go get a medical day.” At 59, the prostate check was all good, but when I went back when I was 60, the GP said: “Oh, there’s something wrong here.”
I had no symptoms. The diagnosis came about as a result of an annual check-up on my birthday, like getting a warrant of fitness for your car.
That bloody word “cancer”, it hits you like a baseball bat.
The doctor said to me that I possibly might have prostate cancer and, to me, people that stick their finger up your bum are not very nice. It just put me right off.
The specialist in the hospital checked me over, banged his finger up my arse to see if he could feel anything. And he said: “Oh, you’ve got prostate cancer.”
When I saw the specialist, they said they would put me on “the list” for a biopsy. After three months, getting on to four months, I went back to the GP. On his advice I rang the Oncology Department to remind them that I was on the waiting list. I complained that I had already been waiting for four months! The very next week I received a phone call from Invercargill Hospital asking me to come in for a biopsy.
Initially, I held off doing anything, because the urology department in Dunedin was in a state of disarray, and I couldn’t see the point in disrupting things with a biopsy, because I couldn’t see anything happening quickly.
I had no idea what was involved in the biopsy. But I read a Cancer Society book on prostate cancer. Everybody who gets prostate cancer should get one of these and read it.
The specialist said: “You’ve got prostate cancer and you’ve got 10 years to live.” You know he was just so matter of fact. He was just like doing his job sort of thing. There was no empathy in his tone or anything. That was the first time I had met him. I think he told us his name, but after he gave us the news, we didn’t care who he was.
We didn’t complain about the way we were told he had prostate cancer, because, in all fairness, we were just drained. We just wanted to get home, and when we did, we just got drunk. It was like someone had stuck something in my heart.
The hardest thing once you know you’ve got it, is telling whānau. That’s the hardest thing. All of the people you gotta tell. And it hurts.
Deciding what to do
You have to go to the specialist at the cancer centre and he gave me the options of having an operation, chemo or radiation. He said: “Now which one would you rather go with?” I said: “Radiation sounds pretty good to me.”
Mind you, I had to struggle with those three options because I’m not medically minded. And trying to get my head around those options, I come up with radiation. He said to me: “That’s a good one.”
The oncologist told me I was too old for surgery, apparently there’s a cut-off age at 74, and that because I had started the Zoladex treatment, surgery wouldn’t be a viable option for me by the time I got to the top of the waiting list anyway. And he added: “Unless you’ve got a big fat wallet.”
I went to the urologist, who only really talked about surgery. But he said as he was leaving for me to also consider radiation. He didn’t elaborate on that any further. He said that I could do nothing, but if I decided to do nothing, I would come back in five years’ time and then they wouldn’t be able to do anything at all for me. So that wasn’t really an option.
The oncologist described surgery as like “a plumber taking out a bit of leaking pipe and putting it back together again.” In the end I went through the private system as I had medical insurance and had surgery. I can’t speak more highly of how well the private system works.
I never felt that I was given all the information about the various treatment options available to me, particularly radiation. It wasn’t until much later when I was at the Prostate Cancer Foundation that I heard about all the options. I talked to a radiologist who said: “Usually how it goes is, the last person you talk to, is what choice you will make.” I was pissed off about that, eh.
I was given the option of surgery or radiation. But I didn’t really get any advice or counselling on the options. So, I had to just simply go and get a booklet.
I had the money in savings, and my wife was all for me taking it out to pay for the surgery. But the savings were for an emergency, and I don’t class myself as an emergency, you know. If my grandkids had something wrong, and they needed the money, they would get the money before I would get the money.
I found it really awkward trying to get into the public system having gone private for the initial diagnosis. So, I said to the wife: “I spent 42 years paying taxes in this country, they owe me. So, I don’t care how long it takes, I’m going to sit it out, and we’re going to get this done through the public system.”
I was told no one was available to do the surgery, so I was told I would have to wait for five months. Five months came and went without any contact from the urology department, so I had to contact them. They arranged for me to go down to Invercargill for the surgery.
A lot of Māori don’t like having their parts taken out. The doctor told us he “knew about that”, meaning our Māori way of doing things. I thought that was really cool. He even asked if I wanted it back. I said: “ Nah, it’s okay.” But he did ask. He asked, and they put it in a jar. And he’s only young and I thought he was wonderful.
You have to listen to what people are saying, you know, and not block out things you didn’t want to hear. You’ve got to have that right attitude to listen, and you’ve got to be patient, too. I was lucky I had my kurī. He just sat next to me for those whole two weeks, and he just kept me sane. Otherwise, if you’re just here on your own you go mad.
My wife goes with me all the time (to the appointments). She pretty much breaks it all down for me. Then she says to me: “Why weren’t you listening?” “I thought I was.” “No, you weren’t, otherwise you would’ve understood.”
For five weeks, I’d go on a Monday morning, have treatment, and come home on Friday for the weekend, because the place closes down. I stayed in the lodge. It’s like a five-star hotel, it’s a flash place. You meet a lot of people there, but not that many Māori. There were more Pākehā . . . everybody comes from all walks of life. However, there were still Māori there.
I was sitting there in the hospital and one young nurse came out, she said: “What’s the matter, koro?” And I said: “Oh, nothing.” “Oh, but I think there’s something wrong with you. I’ll get the padre to come and talk to you.” So, she went and organised it. She was only young. I don’t know how the hell she picked it up, but she just knew. And I wanted to go back and thank her afterwards, but she never came back on to that side again. Anyway, the padre came, and I had a good talk to him. It was good to hear his kōrero about that ‘old fella down there’.
I put my head in the sand. I couldn’t go to a tangi for a long time after, and I didn’t want to know about people who had anything to do with cancer, because I didn’t want to have the conversation. However, down the track, I do understand the importance of the kōrero, and getting over yourself.
I fell into depression and went off the rails a bit during the convalescence stage. I wound up in court for assaulting a friend. I didn’t want to blame my actions on the cancer journey, but I felt things, especially the incontinence and the lack of sexual activity, probably contributed to my state of mind at the time. In the end, it was sorted out through restorative justice, and I managed to keep my job.
After the surgery, they gave me exercises to do — it helped with the leaking. I used to get whakamā, you know, because you can smell it, eh? You come away from the marae or something and especially when you’re with people. Sitting beside them, you come away, come home, and get changed.
I had the luxury of having the district nurses — they were awesome. They would ring me up and tell me they were going to be in the locality and say: “Oh well, I’m going to pass by so I’ll drop the pads in your mailbox.”
I’m on the paepae up here. My stitches were across the crease. And every time I had to get up, they were just killing me, you know, but I got through it. You know, it was still raw.
I had some problems with incontinence. When I need to go for a mimi, I find I need to go for a tiko as well, because I can’t control it. If I’m travelling anywhere, I have to make sure that we stop frequently . . . I soiled myself a couple of times and I felt that my pride was like, damn it, but I just couldn’t hold on any longer.
Like I would sneeze and out it comes. If I leave home, if I go into town to go shopping or something, I’d put a pad in. I could just be talking to you now and I’d drip out a bit. It’s getting better, but it’s always there.
I did have some dark thoughts, but I needed to put them aside and concentrate on the good things. Because I’m a cricket tragic, being an umpire, you umpire what’s in front of you, you’ve got to make a decision on what’s in front of you, and I guess any illness is like that, you have to deal with what’s in front of you.
Sex after treatment
I had problems with erections since the surgery, which haven’t come back without help. Intimacy with the wife has gone on hold. I tried injections, Viagra, Cialis and all, but nothing really worked, or the timing was wrong. You just get the sense it’s not connected in the same way. Erectile function has completely gone.
One of the things with prostate is, when they operate on you, you can’t, you know. I was really scared about that. Going through life without, you know. I was blimmin’ scared. Mataku atu, eh. Yeah, I thought, they’re going take a chunk out of me and that’s the end of it. But, oh heck. Good as gold, better than gold. That was a really important thing, it really was.
Sex is something that we miss, but hey, it doesn’t bother me. The doctors had already told us that we ain’t gonna be sexually active. When we were told about the sex therapist with the DHB and to ask for a referral — well, now, I thought, you’ve opened another door for us. That’s cool.
Like now, I’ve got the blue pill or whatever, but I think it’s more about having a tutu or muck around sort of thing. Yeah, a couple of times there, it came up on its own, but talk about lightning, phew. Sorry about mum. She’s all over. It’s only a dry blow because you’ve got no semen or sperm or whatever.
I’ve tried Viagra. It’s a 50/50 response and all you get is a headache and a flushed face, pretty much. All the blood goes to the wrong head. As far as worrying about the sex part, no, no, there are more important things. That’s definitely on the back burner.
Mā kōrero ka ora
We had a 21st last weekend and all of the young ones were there. I got up and I had a kōrero about it. There were three of us there that had prostate cancer and I thought it was a good time to get up and say something, so I spoke about that. At the end of it, all of these guys, fellas, come up to me and said: “Thank you.” And I thought: “Oh well, cool!” They had been listening.
I would spread the word to anyone. If you ever have trouble with the old fella, you better go and get it checked out.
You’ve got to go and see the doctor. I don’t want any more of our people dying. There are enough tangi out there.
These excerpts are taken from interviews with 15 Māori men for Oranga Tū (a healthy stand), a co-design Māori health research project which was conducted using a kaupapa Māori methodology. The project co-leader, Associate Professor Jacquie Kidd (Ngāpuhi), is Associate Head of School: Māori Advancement at the AUT School of Clinical Sciences. She says the study found significant gaps in service provision for Māori men and their whānau, especially in the community sector.
The project’s other co-leaders are Dr Richard Egan, a senior lecturer in the Department of Preventative and Social Medicine at the University of Otago, and Māori health specialist Rawiri Blundell (Ngāti Porou) at Te Awakairangi Health Network.
A short documentary produced as part of this research, Oranga Tū, is available at TVNZ on demand as well as Māori Television.
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