Living life’s every moment: sharing stories of Illawarra palliative care

Cancer sufferer Peter Housler and wife Jeanette. Picture: Sylvia Liber

Cancer sufferer Peter Housler and wife Jeanette. Picture: Sylvia Liber

Death is part of humanity but it’s not a topic of dinner party conversation. Perhaps it should be.

You could be waiting at the check-out next to someone getting close to death, as around 600 people are on the Illawarra palliative care register.

Over the past 30 years Australian palliative medicine has evolved to become a massive network of helping hands to support people on their final journey.

Health professionals find the biggest misconception around needing palliative care is it means you’re stepping into a grave.

Desiree Savage spoke to these Illawarra locals who attest, dying doesn’t have to be a sad and painful affair.

'No point in worrying about yesterday, just worry about tomorrow and take it day by day,' says cancer sufferer Peter Housler. Picture: Sylvia Liber

'No point in worrying about yesterday, just worry about tomorrow and take it day by day,' says cancer sufferer Peter Housler. Picture: Sylvia Liber

Peter Housler, 69, cancer sufferer

In February Jeanette Housler felt like a “tonne of bricks” came crashing down on her.

She was terrified after learning her husband of 43 years, Peter, would have limited time left on this earth.

The grandfather to 11 discovered he had pancreatic cancer and it came as a shock because the energetic 68-year-old had “never had a day of sickness in his life”.

The Albion Park couple did everything together since they married in 1974 and the thought of life without him was incomprehensible to Jeanette.

Doctors tried to fix the problem with mass surgery, removing Peter’s spleen, adrenal gland, several lymph nodes and two-thirds of his pancreas. 

But the aggressive beast clenched to his body and moved to invade both of his lungs, not letting go.

The clock started ticking with six months to a year left for Peter to complete his bucket list and enjoy time with his family.

“This time last year we were on a seven-and-a-half month trip around Australia in the caravan and then this year, it’s just, [he was] so fit, climbing up mountains,” Jeanette recalled.

The couple were regulars at Lake Conjola where they’d often enjoy “happy hour” with friends they’d made over the years.

Peter, a former firefighter and railway worker, had also been a keen cyclist clocking up 50 kilometers a week as well as touring around on his road bike, a 900cc Yamaha. 

But he’s too weak for that now.

The surgery flattened Peter and left him in hospital for eight weeks and in an awful amount of pain.

Jeanette felt like she wasn’t being told the truth about how long he had left.

“It’s extremely emotional, you just don’t know what to think,” she said. “You’re in a void.”

Both were scared to ask for help and “terrified” of mentioning the ‘p’ word.

“For me to have to go to palliative care, you start to think ‘this is the end’,” Peter said.

“I was so afraid. You feel very lonely and isolated … you feel like you’re sitting in a dark room by yourself.”

I was so afraid. You feel very lonely and isolated … you feel like you’re sitting in a dark room by yourself. - Peter Housler

Jeanette has her man back at home now, their lounge-room armchairs side by side so they can hold hands watching TV once again. He has good days and bad days.

Chemotherapy and methadone are key in helping Peter live well and achieve his bucket list.

They’re also incredibly thankful for the on call medical staff who can reach out to help in the middle of the night if needed.

The couple has planned to return to Lake Conjola, “any excuse for a happy hour” according to Peter.

He’d also like to jump on his motorbike again.

But the event Jeanette is most looking forward to is getting her beloved through to next Valentine’s Day.

“When you’re in this situation you need to have some sort of goal in front of you, somewhere where you can see that you’re going to go,” Peter said. 

“For us going to be able to get to [Lake] Conjola, have another visit, maybe another once or twice, gives us something to look forward to.”​

'Some people are never going to accept they're going to die ... and that's okay too,' says Ally Barnaba. Picture: Sylvia Liber

'Some people are never going to accept they're going to die ... and that's okay too,' says Ally Barnaba. Picture: Sylvia Liber

Ally Barnaba, Primary Health Nurse

Being a palliative care nurse is the best job Ally Barnaba has ever had. The 30-year-old has been in the role just nine months but the passion for her job clearly shows.

“I don’t think I’ve ever felt so fulfilled as a nurse than I have been with palliative care,” she said.

“It’s like every day you go home and you honestly can say ‘I’ve changed someone’s life’. It’s such a beautiful thing to be so proud of what you do.”

In western society we don’t deal with death too well, I think it is a taboo subject and people don’t really like to talk about it. - Ally Barnaba

Ally is one of the youngest in the Wollongong team but said it’s not all about sadness, and is full of great moments with extraordinary people.

“To say that you love your job [people] think it’s quite a morbid discussion and people aren’t willing to talk about death,” she said.

Ally is one of the community nurses who are like the eyes and ears for the specialists, there for patients when they need or just to check they’re doing okay.

The majority of her patients are elderly but she also meets children, young mums and fathers along with their families and carers.

“No matter what age they are these people are so loved and people don’t want them to go, so it’s difficult,” she said.

One of the obstacles for her is remembering these people can’t be spared from death but that feeling is quickly overtaken by pride in knowing she can ensure they have the best quality of life for their time left.

“In western society we don’t deal with death too well, I think it is a taboo subject and people don’t really like to talk about it,” Ally said.

“We don’t look at death and celebrate it like other cultures do.”

While she says other nurses strive to work in areas like intensive care, for Ally working with people on their final life journey was something she’d always wanted to do and feels “blessed” to be where she is.

Recently she was shopping and bumped into a mother whose late son she had given support to.

“She gave us the biggest cuddle, she was crying and said ‘you guys just helped us through that period so much’ and she was so grateful for the service and grateful for us,” Ally said.

“For her to say her son loved us coming in and we were like a ’ray of sunshine’ to someone that is looking down the barrel of dying, that in itself just makes this job so worth it.”

'End of life is everybody’s business, because anybody who’s working in a clinical role will come across people who are dying at some point,' says Kay Cope. Picture: Sylvia Liber

'End of life is everybody’s business, because anybody who’s working in a clinical role will come across people who are dying at some point,' says Kay Cope. Picture: Sylvia Liber

Kay Cope, District Palliative Care Clinical Service Manager

One of the most uplifting moments of Kay Cope’s life was holding her Aunt Jenny’s hand as she slipped away.

Kay had spent two years helping her lifelong friend through the ups and downs of her illness, lung cancer.

She was a guardian angel to look out for her and fill in the blanks when Jenny was putting on a brave face for the doctors and nurses.

“I was sitting by her bed knowing it was getting pretty close,” Kay said.

When Jenny’s son arrived Kay got up to go for a walk but intuition told her not to go. She was grateful she stayed and so grateful to be at Jenny’s side.

“I just held her hand and I talked to her and then she just slipped away. And I thought ‘thank you I was able to be there and honour that’, because she didn’t want to be alone when she died,” Kay said.

That beautiful moment inspired the allied health professional to change her own path and take a job in palliative care. She wanted to become an “advocate” for others travelling to their final destination.

“Once upon a time people just got very ill and very sick, and eventually they died,” Kay said.

She believes palliative care is not a death sentence but rather support for people reaching towards death, and certainly “not the end of their story”.

[People] don’t want to accept palliative care because they think it’s an admission that people have given up on them. - Kay Cope

Kay described palliative care as a holistic service - incorporating a range of staff from social workers, to physiotherapists, GPs and nurses - who find out the needs of a patient and how to manage their symptoms.

“It’s talking to the person and finding out where their head’s at and their soul is at,” she said.

“People think that palliative care is having one foot in the grave, that they’re about to die, and they don’t want to accept palliative care because they think it’s an admission that people have given up on them.”

Eventually Kay will need to walk beside her mother – as she did with Jenny – who is now living with breast cancer.

Kay admits sadness does come with the journey but she is grateful her mother understands it’s okay to ask for help rather than give up.

“I know when my mum goes it’s going to be devastating, she’s so much a part of my life,” she said.

“But we talk about death quite a lot and what’s important to her.

“When the time comes, it will be a matter of honouring what she wanted in her life ... knowing that we’ve given [her] the best of us.”

'As scary as it sounds, when you hear that someone has to go to palliative care it’s the best thing for them - if that’s all they can do it’s a very positive experience,' says Mikala Ramsay. Picture: Sylvia Liber

'As scary as it sounds, when you hear that someone has to go to palliative care it’s the best thing for them - if that’s all they can do it’s a very positive experience,' says Mikala Ramsay. Picture: Sylvia Liber

Mikala Ramsay, 24, lost her mother to cancer

It’s been more than two years since Mikala Ramsay’s mother Barbara passed away from lung cancer and she’s only now coming to terms with her grief.

“I think because a lot of the grief does happen during when she was sick, and after she passed away it was kind of like an unreal feeling so I just kept going on with life,” the 24-year-old said.

Denial was the first emotion she felt when Barbara told the family of her diagnosis, followed by every other emotion, and ”never at appropriate times did the right emotion come along”.

Mikala isn’t sure whether her mother kept her illness a secret, choosing only to tell her when the end was near.

“I didn’t see her for a week or two ... and then when I did see her she was all of a sudden in a chair and had the oxygen tank,” she said.

“That became the reailty for me and my sister to step in and look after her … that was really confronting.”

Mikala is incredibly thankful to the palliative care team who stepped in when Barbara finally accepted she needed help.

As scary as it sounds, when you hear that someone has to go to palliative care it’s the best thing for them - if that’s all they can do it’s a very positive experience. - Mikala Ramsay

Even though it was difficult watching her mother slip away she said the pressure was lifted so they could enjoy being in each other’s company.

“It made it less about the sickness and more about spending our time togehter properly, not having to focus on all the yukky ins and outs of the disease itself ,” Mikala said.

“If anyone knows a palliative care nurse or ever gets to speak to them they should really thank them.

“They do the most amazing job at making someone‘s final days comfortable and not only that person but a whole family … every day they know they’re going to lose someone but they keep on going.”

Read more

For more on palliative care