opinion

When it comes to dying, Sue Jensen says it should be "My life, my choice."

By Jane Cowan.

Don’t Google it.

That’s what Sue Jensen’s doctor told her when she was diagnosed with oesophageal cancer.

She did – once. Walked around the backyard all night crying.

Then, she got on with it.

“It is what it is,” she says.

You have cancer

It had begun with trouble swallowing.

This kind of cancer is usually something that happens to older men in connection with smoking.

Sue is 59 and doesn’t smoke but remembers when workplaces were a soupy miasma of exhaled air you had to wade your way through. No question she was a passive smoker for years.

She faced a radical surgery that only a fraction of patients survive, doctors removing a section of her food pipe. It took 18 months to recover. That was more than seven years ago.

Five years after the operation, she was given the all clear.

But it came back. Now the cancer is in her lungs.

But it’s slow growing, contained. Glass half full.

Sue’s gone on the attack, having just spent four weeks in hospital for aggressive treatment with daily radiotherapy and weekly chemo.

Life is elsewhere

Going into hospital is a slow shedding of ordinary life.

You come in with coffee cup and cake in hand – a regular person, all the trappings.

Thongs on your feet speak to a casualness that’s not here. Should be headed to the beach with feet like that, or down the shops to pick up some bits and pieces for tea.

Within an hour you’re hooked up to tubes, chemicals streaming through your veins.

Next thing you know you can hardly make it to the toilet a metre from your bed, you’re in your underwear in front of a cast of too many – your son, your many nurses.

Outside the window it pours all day, rainwater collecting in the gutters. A patch of lichen on the tin roof, a pattern your eye returns to. A bird flitters every now and then, the traffic sighing on the road beyond as other people’s days go on.

There’s a sense of life happening elsewhere. A distancing from normality with each hour you’re stuck in this room.

Monitors beep with varying degrees of urgency. Sometimes quietly, sometimes insistent. Nurses ebb and flow in and out. They palpate your forearm, stick a cold instrument in your ear, have you recite your name and date of birth before dispensing the next pill.

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Your life becomes stories told to you by your sister, your son, about people you know, from the real world.

Your future is a quiche at noon, a fruit cup at three. A coughing fit. A trip to the bathroom. Maybe sandwiches for dinner. Ice cream?

Someone helps you fill out the menu because you can’t write with the drip in your arm.

There’s a tattoo on the lunch lady’s calf. It reads: “We’ve got holes in our hearts, we’ve got holes in our lives. But we carry on…”

euthanasia laws in australia
Sue Jensen believes she has the right to manage her own health. Source: ABC.

What you don't want

This narrowing, this excruciating drawn-out shutting down is precisely what Sue doesn't want for her last days — if it comes to that.

She has no problem with palliative care. This is not palliative care versus euthanasia, she says.

She just wants the right to choose from a full range of options — not for anyone else, for herself.

The "euthanasia debate" is ass-about, if you ask Sue.

"The whole discussion is run by people that aren't sick," she says.

"We've got these positions put out and we have all these facts and figures trotted out about what countries have it and how many people and that sort of stuff but, you know what? Nobody bothers to ask me. This discussion, which we need to have, it's about me, it goes on around me but doesn't include me," she says.

And so here she is, using some of her precious energy to talk to the media.

"I'm happy to be the token sick person," Sue says, only half joking. It's her way - the bluntness, the straight talking. She must be getting better because she's started ordering people around, the bossy streak returning. Just ask, she'll tell you.

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The point is, Sue has something to say. She is speaking up for all those lying in hospital beds too weak to say it for themselves. She is speaking, too, for the sake of all those who have opinions and research and good intentions, but no direct experience.

Of the more than 1000 written submissions to the Victorian parliamentary inquiry into end of life choices, Sue counted hers as one of only a few dozen that came from people who identified as being sick. Though the committee says it was more like a few hundred when you include those who made confidential submissions.

"I'm the elephant in the room," Sue told the inquiry when she was called to speak.

Many others are talking from learned knowledge, something they've studied, analysed, an opinion they've developed.

"I'm living it," Sue says.

"Doctors talk about individual treatment plans for each person. Well, I might not want palliative care. But the person in the next room to me might. And that's fine, there's no problem with that. But the reality, the everyday reality for things like palliative care is that we'll park you in a hospital bed 24/7 and the doctors will come in and see you once a day for five minutes or whatever, the nurses come and go doing all your obs and things they need to do, your family will come and visit you for an hour or two hours or whatever. You might have the social worker at the hospital where you are come and see you.

"But by and large, 20 hours a day, you're sitting in a room in a hospital bed on your own, knowing that your time is imminent, that you are going to die. Nothing can be done to change that. It might take two weeks, it might take 10 weeks, but here I am parked in palliative care because everybody else thinks that's what it should be, while I sit there looking at the walls, probably souped-up on some sort of painkilling medication, drugs whatever, to keep me alive. Why? Why?

"Why am I being kept alive knowing full well my situation is terminal and nothing can be done to save me but somebody else thinks it's a good idea to have me parked in a hospital, souped-up to the eyeballs on who knows what, with the fleeting visits from whoever comes and goes. It's ridiculous.

"Yes, there probably needs to be more money in palliative care, I don't have a problem with that. But I just don't know that that's all that there should be. There should be options other than just palliative care just because that makes somebody else feel good that they're doing something when they're not."

Rant over, she apologises.

For the love of a tall woman

At 6'3" Sue is the kind of tall that attracted attention as a child. Taunts even, back then. Kids will home in on anything that makes you stick out.

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As she has gotten older Sue's started to use her height to her advantage, towers over men sometimes, when called for. It turns the tables.

"I wear high heels too," she says without a hint of a smile. Just the eyes glint.

She and her husband, Peter, once ran a business selling tall women's fashion, mostly to the American market. It's a thing.

They'd get an order and climb up in the attic to fill it from their stocks. This was before internet commerce was commonplace.

Now, in her hospital bed, Sue's legs splay out the sides, knees bent as if in some kind of yoga pose.

Eventually maintenance is called, someone with tools comes to remove the end of the bed so she can lie straight. Relief.

The hospital-issue socks still don't fit. That's okay.

Sue's height is accentuated by the thinness of her frame right now. She's lost 35 kilos from an already fit physique.

She is wiry but still imbued with an underlying strength. She's played badminton, basketball and netball all of her life. This body runs and jumps.

Though she needs a hand to shuffle between the armchair and the bathroom these days, she wasn't always so fragile.

Sue and Peter met in year 11.

"I saw her walking past and I was attracted to her and she was to me and about 10 years later we got married," Peter says.

His single sentence account of their love makes it sound simple, in the way great loves are. No explanation necessary.

"It's fair dinkum," he says.

Peter worked for Telstra when it was still Telecom.

Way before it was a news item, they'd talked about it. Long ago, before Sue was sick, before they had kids, even. Euthanasia.

Peter doesn't do euphemisms.

"This experience you're going through," I begin, an attempt at sensitivity.

He corrects me right there. "The cancer, you mean."

He fully supports all 49 recommendations of the Victorian parliamentary committee that investigated end of life choices and advised legalising assisted dying for those with serious or incurable conditions.

"Anybody who disagrees with it probably hasn't read the report," he says.

"The report's available online at the State Government website, so go read the report and then make a bit of a choice. Don't just bullshit on."

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It is fair to say Peter is unimpressed generally when it comes to the tenor of the public conversation around end of life choices.

Pretty piss poor, if you ask him.

"Most reports that I've seen on TV will have a 'for' 10 seconds and an 'against' 10 seconds with a little bit of commentary and there's no coverage of actually what it's about," he says.

Peter can't stomach other people presuming to know what's best for his wife.

"The people who are dying need to have an input to everything. More than an input, they're the ones who should be deciding what options they take. And to have other people, whether they're church people or politicians, or doctors or nurses - the list goes on and on and on - or lawyers. To have them decide what Sue wants is absolute crap. It's up to Sue to make her own decision," he says.

"She's not mentally incompetent, she's a very high functioning lady and she knows what she needs to do and it's up to her to make her decision that if she's going to die then she wants to die with dignity and not be addled with pain which'll cause her lots of anxiety and grief as well as myself and our children.

"If anybody read the report, there's a lot, probably a third of it regarding palliative care and improvements to the palliative care existing system. People who haven't read the report have absolutely no right to say it's either palliative care or euthanasia. Dying with dignity encompasses the whole lot: you've got option A, B, C and D or whatever you have. And it still gets down to: it's up to Sue to make her own choice about how she wants to pass away, if it comes to that.

"Hopefully all her chemotherapy, radiotherapy that she's been having for seven and a half years now will work. The doctors are pretty positive about it so we'll have her here for a long time. But if it ever does come to that, it's not up to anybody else to make a decision for her. It's a decision Sue and I will make."

euthanasia laws in australia
Sue Jensen believes she has the right to manage her own health. Source: ABC.
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This is what endurance looks like

Sue Jensen is the kind of mentally tough that makes her hesitate to even answer questions about how she's feeling.

She's focused on one objective: beat this.

Ask her what she thinks of when she's lying on the table between the great moving arms of the radiation machine and she'll tell you she's just chilling out.

No meditation here, just relaxation.

Her body bears the signs of the fights she's already won.

The mottled pattern on her belly from her two boys - one a musician, another ex-Special Forces, Afghanistan.

They couldn't be more different, her sons. Aaron is a homebody, stays close. Matthew, though he's staying in the bungalow on their property, is more independent. The military probably does it to you. But there were signs of it early, the unique personalities. The time she busted the boys for small-time graffiti. Aaron confessed, crumbled immediately. It took Matthew a month to crack. Resistant to interrogation techniques, as an 11-year-old.

The red laser aligns momentarily with the scar from when doctors cut the cancer out of her chest in an eight-hour operation.

There are still consequences. She has to eat constantly, just small amounts. Cheese on dry bickies, small cups of Milo, tinned spaghetti warmed in the microwave. Every now and then she'll go gluten free just to give her system a break.

Looking at Sue you'd be hard pressed to believe this is a woman who almost died a month ago when the tumour collapsed her lung.

There's faded nail polish on her fingernails as her hands rest on the arms of a wheelchair, and she wears a fluffy pink bathrobe. Her uncreased forehead is smattered with light freckles, same as her sister's. The no-nonsense is set to her face.

Chemo

Sue hates needles.

It's one of the few times you'll see her show any hint of fear, get the slightest bit panicky.

"I know I'm a sook," she says, as if unwilling to allow herself even this momentary chink in the armour.

OBSERVE CHEMO PRECAUTIONS says the sign over her bed. Her sister holds her hand in two of hers, as Sue turns her head away, squeezes her eyes shut. Robyn looks on Sue's behalf as the doctor tries to find a vein.

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The moment passes and Sue is back, chatting amiably. But she has to cover her arm with a towel, can't bear to see the point where the tubes penetrate her skin, where the chemo enters her bloodstream.

In the beginning it took seven hours. Now it's much faster, more like three and a half. Her body is handling it well. Sue doesn't dwell on the side effects. Some nausea, a deep exhaustion a few days afterwards. From the radiation, maybe some tenderness in her back, a strangeness in her mouth. There is the oxygen that she inhales when her chest gets tight, her breath raspy. It's the tumour, blocking one of her airways. There's been the odd blood nose.

Sue's hair's begun falling out.

The strands come away as she runs her hand across her scalp and drift to her shoulders. They warn you this might happen, talk to you about wigs, hats, scarves. Sue's not too concerned about that, the aesthetics. This is what endurance looks like.

'A tough old bird'

In the lab where Sue gets blood drawn before each new course of chemotherapy, there are pictures of dogs and bunnies plastered on the wall.

A vase of roses sits on the shelf, the blooms once full but today wilted.

Peter stands with his hands clasped in front as the nurse pierces the soft nook of his wife's arm yet again.

He's a man who likes to know he's taking care of her. He always has. And right now he can't.

Sue remembers lying on the floor of their bedroom four weeks ago, surrounded by paramedics.

Beyond them, her husband of 30 years sat in the corner. Helpless. Useless. He looked distraught.

"Everybody else around me apparently knew things were looking a bit grim. But for me, I was just doing it. It wasn't something that I thought about. You just go with it and do what you've got to do and put your trust in the people that are there to help you at the time which was the paramedics, they were amazing.

"It wasn't really until after, probably a couple of weeks later when I had a conversation with my doctor... that I really realised...I nearly died... which I found a surprise because it was just not something that I'd actually thought about or contemplated."

What they first thought was a heart issue turned out to be a collapsed lung.

In the ambulance Sue saw the Warrandyte pub go past the window, told the medics they were taking the wrong route to the hospital.

A tough old bird, she calls herself.

"But it's just the way God made me. You just get on with it and do what you got to do. Here I am, I'm still going and I'll come out the other end of it."

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Sue knows all the insensitive questions.

Are you really that sick? Do the doctors think your treatment's working? How long have they given you? Where do you think your spirit will be after you die? The things that come out of people's mouths.

She turns her phone off when she's in hospital, focusses on the here and now.

Her son Aaron has inherited the straight talking gene.

"If anyone's going to tell cancer to f*** off, it's Mum."

Ringing the bell

In the radiation wing there's a bell. You ring it when you finish your treatment. The plaque says I AM ON MY WAY.

Today Sue is parked next to it in her wheelchair, waiting for her session in the fortified room.

But in a few weeks, she'll be clanging it.

She's now an outpatient, coming in daily for the radiotherapy. In between times she's sleeping in her own bed, breathing the fresh air at her house among the gums where an upturned horseshoe hangs outside the front door.

There's Christmas coming up, her 60th in the new year. Her garden is calling her.

The home where she and Peter raised the kids and have lived so long - well, you can't eat off the floors but there are more important things in life.

A return to work is already in the diary.

Sue's told her husband she wants a weekender, maybe a cabin down the beach, a place to escape to.

Forget the overseas trip, buy that new car you've been wanting and drive me across Australia, she told him. We've never been to Perth.

What I know for sure

Sometimes Sue wakes up in the middle of the night, wide awake.

She doesn't know if she'd even use the right to die, but she damn well knows that choice should be hers.

"I should be able to be provided with all the options that are available, whether that be palliative care, whether that be improvements to the advanced care plans, whether that be assisted dying," Sue says.

"I am entitled to know all the options and to make an informed choice from all the options. I should not be provided with options that have been censored by somebody else based on their moral, ethical, religious, medical, cultural or other view of assisted dying or voluntary euthanasia. I want them all.

"I can get more information about buying a new car than I can about all the options that are available to treat my illness, which is just outrageous.

"I want to be able to have all the options put in front of me so I can make an informed, proper, considered decision. And it seems as though people seem to think that you know because I've got a terminal illness, my brain's stopped working. Well, no it hasn't. I can still think."

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She doesn't accept that making euthanasia available devalues life or people with certain conditions.

"Contrary to the anti-assisted dying lobby, I don't presume to speak on behalf of anybody but myself. And they've made this, they've made it a bigger cohort than what it is because it bolsters their argument that we're all going to shuffle our relatives along to be euthanased so we can get our hands on their inheritance and all this stuff. It's just a nonsense.

"The very few figures I've seen in relation to this overseas show quite clearly that it doesn't happen like that and that even for people that are actually eligible, depending on what country you're talking about, even people that are eligible to use it, they don't. They're just, they're just relieved that that option is there for them if they choose to use that."

She doesn't accept, either, that the call for physician-assisted dying is driven by fear.

"Look, to be honest I find it really offensive. I just wonder if they've even read the recommendations from the End of life Choices Committee. Because they've laid down some quite clear recommendations around how this should work in terms of, you know, you can't be under 18, it can only be for a terminal illness not a psychiatric illness, you have to have, I think, three independent doctors assess your file if you've indicated that's what you want to do, and I think you have to be within six months of imminent passing.

So I just find it, it's offensive, it's patronising, it's condescending to come out with that nonsense. It's almost like they're on an information loop that they just trot out the same stuff all the time and don't really look at what's being recommended in this report."

Pfft —that's Sue's response to the question of what she'll do if her health deteriorates and the laws haven't changed.

"At this point in time I haven't thought about it and I'm not interested because for me personally, that's almost a bit of a surrender, which I'm not going to do," she says.

"Physically I'm not there and I'm hopefully a long way from there, and hopefully I won't get there. At the moment I'm in the here and the now, waiting to get my treatment finished, recuperate from that and get back to work and some sort of normality.

"You do what you have to do to keep going and so I remain positive that I'll be here for a long time yet."

This post originally appeared on ABC News.

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