‘So what if my results say I’m doing better? I’m still dying – just not right now’

Public servant Amanda Richards* expected to be dead by last Christmas if she didn’t have chemo to stop the aggressive metastatic cancer that had crept from her breast to her liver.

And when the chemotherapy stopped working, her oncologist put her on the hormone tamoxifen, giving it a 30 per cent chance of success.

Yet the side effects deplete Richards’ energy, and make it impossible for her to continue working in the field she loves. She’s already given up her “dream job” and settled for a two-day-a-week position.

Dan Gaffney doesn’t really know how long his treatment will continue working. Photo: Wolter Peeters

“So what if my results say I’m doing better? If I’m supposed to be grateful, I’m not. I’m still dying – just not right now,” she wrote in a letter to fellow cancer sufferers.

Richards’ guilt, her failure to be ecstatic or celebratory about the results, is common among those who expected to die sooner rather than later.

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The Victorian woman will only use a pseudonym to discuss the “unspeakable or impolite dark truths” about her life in limbo, or as she calls it, “living to die”, that she shares with women in her support group.

More than a million Australians alive now have been diagnosed with cancer, and many are still being treated, says Cancer Council Australia. One in 23 Australians are now living in the shadow of death, many with some form of regular surveillance to check on their cancers. A third of all deaths are attributed to cancer each year.

“I have a whole lot of guilt about surviving,” says Brad McDonald. Photo: Tony McDonough

In the past, cancer was a linear thing, says Professor Sanchia Aranda,  the chief executive of Cancer Council Australia. “You were well and then you got sick and you died.”

Now, treatment of many cancers – particularly those that have metastasised, such as breast cancer, or never disappear, like multiple myeloma – is becoming similar to chronic diseases such as diabetes over what is usually a shortened lifetime.

“People do assume that you have a terrible prognosis and then everything is fine:” Dr Toni Lindsay. Photo: Wolter Peeters

“There is no doubt that therapeutic approaches to metastatic cancer are really focusing on this notion that we could turn it into something like diabetes,” she says. “It is not as good as curing it as an early disease, but it is the holy grail of being able to help people to live longer.”

According to Cancer in Australia 2017, the latest report by the Australian Institute for Health and Welfare, the number of new cases is expected to rise because of the ageing of the population, wider screening and improved diagnosis and testing. For example, around 130,000 people are expected to be diagnosed with cancer in 2017, rising to around 150,000 people who will be diagnosed with cancer in 2020.

I’m so very happy cooking a sausage on the barbie in the backyard.

Amanda Richards on life with metastatic cancer

The cost to the health system is also trending upwards. Cancer-related hospitalisations have also risen by 57 per cent in the previous decade to 1.09 million hospitalisations a year in 2014-2015.

At the same time, survival rates are rising dramatically as new treatments, new drugs and trials hit the market at a faster rate than ever before.  In 1988, only 48 per cent of those diagnosed with cancer were expected to survive five years.   Now 68 per cent of those diagnosed will survive five years, according to the report. The five-year survival rate of men with prostate cancer is now 94.5 per cent, for instance, while 90.2 per cent of women with breast cancer are expected to survive five years.

cancer survival rates bar chart

Aranda says many people with metastatic breast cancer and prostate cancers are now surviving decades, but nobody knows exactly how long they’ll live, when complications will strike or what the long-term impacts of newer drugs will be.

Richards’ lifesaving treatment has left her with exhaustion. When we talk, Richards – who is in her late 50s – is lying on a couch and hasn’t been able to go to work for weeks.  Friends treat her as if she was retired, but she can’t do anything that most retirees enjoy.

Friends tell her she looks great – her hair has grown back, and she doesn’t look thin and haggard like a caricature of a cancer sufferer. They regale her with anecdotes about people who have been on tamoxifen and lived for years. If they can do it, why can’t she?

“Absolutely f—ing NOT – that’s why!” Richards wrote in a note to her cancer support group. “Maybe someone else. Not for me. Not living this half-life. Constantly compromising. Living in limbo, waiting to die. It’s always there in some part of my brain – just out of full view, usually. Lurking.”

She is not suicidal or depressed, she says, but not living the life she wants.

Good news/bad news

When Dan Gaffney, now 54, was diagnosed with multiple myeloma in November 2014, his oncologist gave him the good news/bad news routine.

“As he was taking bone marrow, he said ‘if you had this 15 years go, you would be f—ed’,” says Gaffney.

“Oh good, I timed cancer really well,” he recalls thinking.

Since 1988, the survival rate for multiple myeloma, a form of bone marrow cancer that causes excruciating bone pain, has increased 21 per cent.

Gaffney, a media adviser specialising in medicine at the University of Sydney, now has a 45 per cent chance of surviving five years compared with 27 per cent in 1988.

After a regimen of different chemotherapy drugs, blood transfusions, a stem cell transplant and a long stay in hospital, the bone-shattering pain that preceded his diagnosis is gone. But the cancer remains – unlike other cancers, myeloma is always present with the number of mutant cells going up and down – and his prognosis is uncertain.

Compared with 1988, when cancer specialists only had one or two lines of treatment, there are now many combinations.

When Professor Lisa Horvath started 20 years ago as an oncologist, there was only one drug for metastatic colorectal cancer. “That was all we had. Now we have more than half a dozen,” she says. “That story is replicated in most cancers,” says Horvath, now director of research at Chris O’Brien Lifehouse cancer hospital in Sydney.

Every week, Gaffney visits the “chairman’s lounge” at Lifehouse for a subcutaneous injection of Velcade, a relatively new drug that so far has left him symptom-free and kept his cancer under control.

Waiting for treatment, he hears amazing and frank stories of lives cut short, lives in limbo, lives turned upside down by ill health. Often there is talk of how people have thrown in jobs and relationships and cashed in superannuation and other savings to pay for treatment or to tick off items on their bucket lists.

One woman we are told about is now living with her elderly parents and scraping by after she spent all her money, including super, on treatment.  Another man decided to stuff it all, and blew off his savings, his work and his life – only to run out of money and options when his life was extended indefinitely by a new cancer drug.

Others like Tasmania’s Brad McDonald – who calls himself “a guinea pig” – feel riddled with survivor guilt for not dying like others have from melanoma. McDonald was given six months to live in 2012 after surgery and radiotherapy failed to stop his serious melanoma spreading.

Most experts recommend that cancer patients avoid making too many big changes in their lives, but sometimes the pain, the treatment and the cost force change on them. McDonald’s marriage failed under the stress of his prognosis. He was made redundant while he was on sick leave in 2012.

He moved from Canberra to Bridport, Tasmania, in December 2014 when he was too ill to work and was concerned about how to make his money last a lifetime, however long or short that would be.

Shortly after he was told by an oncologist there was “nothing left to try”, he was accepted in a trial of Keytruda – an immunotherapy for serious melanoma – at Lifehouse.

“I have a whole lot of guilt about surviving,” he says. “Of the people who started the trial within first two years, a third died.”

“Of the tens of thousands of people diagnosed with melanoma before Keytruda was approved, nearly all of them are dead … I just happen to walk in the door when they were looking for 20 or 30,” says the former statistician. Keytruda (pembrolizumab) interferes with the growth of cancer cells in the body.

Like Ron Walker, the former Melbourne mayor and Fairfax chairman whose life was saved by the drug, McDonald’s response was extraordinary. For the two years while McDonald, now 61, took Keytruda, he was healthier than ever, walking hours every day.

But a month after he stopped, he was crippled by pain in his joints – only relieved by acupuncture – that stopped him from walking or using his hands until six months ago, when he started to regain mobility.

When he is angry or upset, he finds the view across the bay from his home calming.

“There is an emotional toll you pay … you are not aware of. You are not quite as resilient as you think,” he says.

He is always wondering when the cancer will come come back: “With these newer drugs nobody knows. With other drugs, you know the chances, there is so much data.”

McDonald lives alone: “I can’t get into a relationship because I can’t guarantee that I will be alive in six months. I don’t think that’s fair to someone.”

Reason to celebrate

To outsiders, surviving imminent death may seem like the best reason for a celebration. Those who agreed to speak to Fairfax are aware that some members of the public will think they are unambiguously lucky to survive.

“People do assume that you have a terrible prognosis and then everything is fine,” says Dr Toni Lindsay, a senior clinical psychologist at the Chris O’Brien Lifehouse cancer hospital in Sydney.

She has been counselling young people and adults with serious and terminal cancers for over a decade. “I rarely see anyone who is celebratory because that position comes with a load of anxiety and worry, and your life isn’t like it was,” she says.

When Lindsay started counselling people with metastatic cancers a decade ago, most had a pretty short time frame. Now patients may be told they are dying, only to find that a second, third or even fourth line of treatment may succeed where others hadn’t.

“All of a sudden, I was dying and now I am not,” says Lindsay, describing patients’ angst. “How do you come back from the edge of the cliff, have your toes off the edge and claw your way back? That comes with a bunch of complex stuff, including existential questions about making sense of your own mortality.”

Like McDonald, Gaffney doesn’t really know how long his treatment will continue working.

If anyone can be prepared for death, Gaffney is – at least intellectually. Before getting sick, he spent a year meeting with friends to discuss how they were living as if the year was their last – a mortality book club inspired by the American author Stephen Levine’s book A Year To Live. Over the year, the friends cleared out their attics, some ended relationships and others bad habits.

Gaffney wrote letters of gratitude to those who had made a big difference to his life. He then visited each person, including the mother of a friend of his who gave him advice when he was a teenager.

Now facing the real thing, his approach is to live life fully, and focus on doing things he likes, including his work and enjoying his garden in the Blue Mountains.

“Cancer has been a reminder to live mindfully and well, and to prepare the way ahead by clearing out the cobwebs of the heart with an awareness that death has always been my closest companion,” he emails after our interview.

“The truth is, nobody can say with any certainty how much time you or I have to live,” he says.

His diagnosis confirmed that he didn’t need to make large changes: “It was about cracking open my heart, opening more fully, and letting go of the illusion that I was in control,” he says.

“And that has been enormously freeing. The principal thing about cancer is I am not in charge. Life is doing me, I am not doing it.”

For many people, cancer treatment is a “emotional roller coaster of dying and not dying”, says the Cancer Council’s Professor Aranda.

Some make decisions that they may not have made if they knew they were going to survive.

“So people do things like sell their houses, give up their jobs, and then they find themselves sitting there,” she says.

These changing prognoses  also put “incredible stress” on family and carers.

“They can also be prepared for a partner to die, and the partner doesn’t. And caring can wear families out. Because it is not like the survival is without health issues,” Aranda says.

It is also creating new challenges for the health system: “The longer people live, especially on new drugs, we are faced with newer problems that the health professionals don’t have experience dealing with. The sort of long-term side effects associated with immunotherapy where you have chronic flu-like symptoms.”

Understanding the interactions between these new drugs is also a growing and emerging field, she says, and then there are the costs.  “There are issues [where people are] with being tipped into poverty. You usually can’t work full time, lots of people cash in their super or get paid out a death benefits, and it is suddenly gone.”

“It is a growing dilemma,” says Aranda. “So you have the physical limitations, the emotional overlay, the changes to your social and other circumstances, and the financial impact; [it] is just something  we don’t have a clear handle on.”

Experts like Toni Lindsay say people newly diagnosed with a life-threatening cancer often feel  almost obliged to change their lives, with Hollywood-style escapes and bucket lists.

But as they cope with the idea of a shortened life, their lives increasingly get smaller, and focus on small pleasures at home – one more family birthday or Christmas, another trip to the beach, the birth of a child.

“There is incredible comfort in the status quo,” says Lindsay. “When they have been in this incredible limbo and don’t know what’s going on, and have been thrust in out and of ‘Am I going to die?’ or ‘Am I going to live, am I going to die?’, there is an odd comfort in going to the grocery shop, doing your shopping, taking kids to school and doing normal everyday life things.”

Right now, Richards finds some pleasure in a glass of wine, the occasional night out with her husband, time at the beach in Queensland, and her garden.

One night recently, after a flurry of phone calls every night from friends and family asking about her health,  she realised it was quiet.

“I am in the backyard, cooking damn sausages, and the phone hasn’t rung. I am so happy. I don’t understand people who [have a bucket list] and get on planes,” she says. “I’m so very happy cooking a sausage on the barbie in the backyard.”

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Posted on March 26, 2017, in ConspiracyOz Posts. Bookmark the permalink. Leave a comment.

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