Living life with terminal cancer

Stage 4 cancer survivor Joanne Rye-McGregor. Photo/George Novak

Cancer is our single biggest cause of death, according to the Ministry of Health. More people are developing cancer, according to officials, mainly because the population is growing and we're getting older. It's estimated, in New Zealand, about one person in every three who gets cancer is cured.

But what happens when cancer can't be contained? 48 Hours reporter Dawn Picken spoke with Bay of Plenty residents for whom support groups provide comfort and connection when there is no cure.

Joanne Rye-McGregor plans to see her 70th birthday. The 53-year-old Mount Maunganui woman has Stage 4 cancer, first discovered in her breast. She says she went years without being given a cancer check and insisted on seeing her doctor last April. She was having abdominal pain. "It was a 17 centimetre tumour ... it was like a salami right across the top of my liver. I have multiple tumours." She says she's classified as inoperable and incurable, but not terminal, because the disease hasn't appeared in her bones.

After the recurrence, Joanne visited a support group at Breast Cancer Support Services (BCSS) in Tauranga. The meeting was an ill fit. "There was a roomful of women and I found out I was the only Stage 4. And I just though, yeah, nah. I'm like their bubble pop. You're sailing in a different boat ... and your boat's lost its anchor." She was asked to be part of a pilot programme late last year called Meaning Centered, for people with life-limiting illness. Five people were in the group, including two other breast cancer patients, one person with bowel cancer and another with lung cancer. One participant died in February. Even though the formal, facilitated part of the programme has finished, the group still meets. Joanne says, "We all have the same diagnosis and yet the things we're doing and how we're living are all as different as each individual in the group. Cancer is the big face-off with the ultimate at stake. How we stand our ground is the difference between every one of us in the support groups I belong to."

Joanne Rye-McGregor. Photo/George Novak

Joanne is a friend. We met through a mutual friend and found, as so often happens in the Bay, our paths crossing again and again. She reclaimed the strands of her life after cancer returned, quitting relief teaching, stepping down from the Tauranga Film Collective and quitting fundraising (she spearheaded a campaign that raised more than $1 million for the Omanu Surf Club). She also overhauled her diet and tries to exercise every day.

"This time, I've learned to have more 'stop' time. I never had any prior to Stage 4. I was in a cycle of harden up, suck it up. And I'm learning to say no. I don't need to pretend I'm Wonderwoman."

Joanne continues meeting twice monthly with people in her support groups, including a newly-formed Stage 4 Group at BCSS.

While she has chosen to skip pharmaceutical drugs, other people in her group take meds that make them sick. "The reality is we're going to die. When it turns to s*** - all the pictures on TV - you know what people look like when they're going to die of cancer.

They're this bald cadaver in a bed. Knowing it, and seeing it is what I'm trying to avoid."

Joanne says her husband and her alternative health practitioner don't want her in support groups, believing she should surround herself with positive energy. But she says she can talk about things such as pain control with other Stage 4s that she can't discuss elsewhere. "Sometimes within the group, you find someone who's more like-minded.

Then you can actually have the in-depth conversations instead of having to sit back and bite your tongue." Members of her group do not discuss dying. "Because my reality is death here [she raises a hand before her face] and my task is to distance myself as far as I can from death by cancer." Jennifer Stanbridge is also trying to create that distance while connecting with cancer survivors. The 45-year-old, who lives on the Mount Maunganui-Papamoa border, works full-time in IT and has two teenaged daughters. The Scotland native says she was diagnosed with breast cancer in 2013 that had already spread to her hip and spine. She's had radiation and chemotherapy and hopes a succession of new drugs will keep her going.

Everybody's different and their needs are different. Just because you have metastatic breast cancer, it doesn't define you.

Ngaire Laker-Metz

She says it's tough talking to newly-diagnosed women who expect recovery. "It brings them down and stresses them out. Often they're angry they got it but I think, 'You're one of the lucky ones; you're getting better'. They might say, 'That poor woman,' and I don't want their pity, either." Jennifer says at the BCSS Stage 4 group, she can speak freely and learn about new treatments. "We give each other hope that we're not going to drop dead.

There's alternatives. There's trials, there's all sort of stuff going on. The first session, I sat and cried all the way through it. One person gave me hope when I had none."

Rotorua GP Dr Britta Noske does meditation workshops for cancer patients. Photo/Andrew Warner.

Breast Cancer Support Services' Ngaire Laker-Metz coordinates the charitable trust's support groups and volunteers, too. She's had primary breast cancer twice, but says she doesn't pretend to understand what women and men with incurable cancer are feeling.

She says BCSS started convening the metastatic support group this year. "Everybody's different and their needs are different. Just because you have metastatic breast cancer, it doesn't define you." Ngaire says an advanced cancer diagnosis can be especially isolating, and she hopes through meet-ups, lunches and outings, to promote friendship and fun. So far, she says about a half dozen people have joined the Stage 4 group. "It's not going to be something that's going to be okay and their life will get back to a new normal. These men and women are facing ongoing treatment ... they don't feel as though they can say to people newly-diagnosed, 'Mine's now spread to my bones and liver' ... there's a different set of challenges."

Heather and Tony Dodunski are also facing metastatic cancer with help from a support group. Tony's prostate cancer has spread. The 69-year-old says surgery left him incontinent, something he was reluctant to discuss with friends. "I found it very embarrassing. I was wearing up to four pads a day ... In the last three weeks, I've had an operation and I've had a sling put in by a Tauranga surgeon and found it 100 per cent successful. I'm not wearing any pads now. And that's one of the things I'll take back to the next meeting." Heather and Tony recently started co-ordinating support sessions.

Breast Cancer Support Service Tauranga staff member Ngaire Laker-Metz. Photo/George Novak

Heather says, "We started going about four years ago after Tony had his operation and found it very helpful. You find out things are available that you knew nothing about, like massage ... and talking to other wives about the same thing. Initially, you sit there feeling a little bit like you're not sure what to say, but then somebody opens up and away you go."

Rotorua GP and breast cancer survivor Britta Noske facilitates support groups through Aratika Cancer Trust. Dr Noske says connecting with other people, in addition to making lifestyle changes, is important for cancer patients. "My own thought is people should be in a support group from the word go to put in place things that can reduce the risk of recurrence, like exercise."

It may sound contradictory, but Joanne says being around other metastatic patients helps her focus on wellness. On healing. On possibilities. She says, "This is your one life. What do you want to do with it?"