Ingeborg van Teeseling

Surviving cancer, but not the stigma

According to the three cancer survivors I spoke to, beating the disease brings its own societal condition. You are a cancer person, act accordingly.

 

I am going to call her Marjory, because she doesn’t want to tell her story under her real name. Neither do the other people I spoke to for this article. The problem is not their illness. Having cancer is not something to feel ashamed about anymore. The era we called it ‘the big C’ and used hushed tones is clearly over.

What is still shameful, though, is surviving cancer. Surviving and not feeling grateful, not celebrating life, not praising every new day and the doctors who provided those. Saying out loud that after months and sometimes years of treatments and fear you don’t know what to do with your new lease on life, that, apparently, is shocking and disgraceful. Even quietly voicing the ‘now what?’ question can cause people to lose people. It seems there is an accepted way of dealing with both illnesses and surviving it. Embracing all the treatment available, being positive, never giving up, being brave in the ‘fight’: that is how you handle being sick. If the medication works, there is a prescribed method of response as well: being grateful, embracing every precious hour, not sweating the small stuff, smelling the roses. But sometimes people can’t do that. Sometimes they survive and are shell-shocked. The fabric of their existence has been ripped to shreds and they don’t know how to handle it. When that happens, they run the risk of becoming outsiders in their own world. People who can’t use their own name to tell their story.

Like Marjory.

The latest report by the Australian Institute of Health and Welfare was a case of good and bad news. Certainly, there was an increase in cancer cases since they first started measuring in 1982. Then it was 383 per 100,000 people, now 407. But that was down from 504 in 2008, so could be seen as a positive. But because more people live in this country now and the treatment has changed, the amount of cancer-related hospitalisations have risen by 57% of the past decade, to more than 1 million a year in 2015. Every year, 130,000 people are diagnosed with cancer, which is a lot. But the flipside is that mortality rates have decreased dramatically. In 1982, 209 per 100,000 people died, against 161 now. In 1988, only 48% survived for five years, now that is 68%. Apart from cancer in the bladder, larynx and lip, all cancers have better survival rates than in the 1980s.

That means that there are thousands and thousands of cancer survivors out there. People who confronted death and then lived instead. Like Marjory. In 2007 she was diagnosed with breast cancer. It was serious and it needed surgery. A bilateral mastectomy, to be precise. Because Marjory had never been particularly good friends with her breasts, she chose not to do a reconstruction and leave her chest the way it had become: flat and with large scars. Somehow she got used to that, even if her husband didn’t. Marjory had bigger fish to fry: the chemo, many cycles of it over four years, was hollowing her out. The side effects were horrendous, and every time another one started she got more tired, and more despondent. Time and time again the cancer came back, until she was enrolled in a trial that seems to have cured her. She has been in remission now for five years, the magic number.

But those ten years dealing with illness and treatment have fundamentally changed Marjory. When she was first diagnosed she expected to be brave, positive, an example to her family and the world. In reality, she was none of those things. On the contrary, most of the time she was a blubbering, wailing wreck, demanding attention, keeping her already exhausted husband and children up at night with unreasonable requests. She is ashamed of that now and utterly disappointed in herself. Tested and found wanting, she finds it difficult to look at herself in the mirror. Confronted with the worst of herself, she also finds it almost impossible to deal with other people, especially when they are nice to her. Often, she feels that it would have been better if she had died. Easier for them, easier for her too.

Confronted with the worst of herself, Majory also finds it almost impossible to deal with other people, especially when they are nice to her.

It is a sentiment Brett recognises. But Brett is not sad and depressed, he is angry. He knows he shouldn’t be, but that makes him even more furious, to tell you the truth. When he counts the reasons, he needs more than two hands. First of all, there is the poverty. When he was diagnosed with colorectal cancer, he had to stop work almost straight away. There was no more money coming in, but there were bills regardless. Stacks of them. Within two years he had to sell his house and move into rental accommodation, and later even to a tiny one-bed flat. He sleeps on the couch in the living room, so his two children can have a room to themselves. Since his wife left, because of the cancer, Brett thinks, they are his only joy. But it is difficult to care for them when you are tired all the time, and your body feels like lead. More than that, though, what gets Brett’s goat is the fact that everybody wants him to be grateful. Grateful that he is alive. It is either that, or the looks that he gets from people. Like they want to say: ‘why isn’t he dead yet?’ And then there are the older folks, who expect him to praise God now, go to church, get on his knees and celebrate the Lord. For what, he wants to yell at them. For the life he is living now, with no money, no job, no marriage, in constant pain, with the sword of Damocles always dangling over his head?

Although Richard is less forceful and outspoken than Brett, he does agree that surviving cancer is not a simple joy. When he was given six months to live in 2010, he really made an effort to come to terms with his impending death. He went to visit the people who were important in his life, to tell them what they had meant to him. He contacted those whom he had wronged, even years before. And then he sold his house to pay for a last big hurrah, the trip around Australia that he always had dreamt of making. Then he came home, camped in his parents’ garage and prepared to say goodbye. During treatment, he was constantly confronted with fellow patients who lost their lives, but somehow he didn’t. And the longer that took, the more he became alienated from the ‘normal’ world. The hospital was the real reality, but there he turned out to be one of the only survivors. Guilt started to take over. Why he and not that lovely mother of three, or the fantastic pianist he had grown to love? He disconnected himself from his parents, his friends. They didn’t understand who he was now, and he had no time to explain. So when his doctors told him that he was in remission – a miracle! God be praised! – there was nothing to belong to anymore. Evicted from the world of the hospital, no longer at home in the regular one, he felt very much alone. And does still, three years after the good news that maybe wasn’t that good after all.

All three of my interviewees are struggling. With themselves, with their nearest and dearest. And with us, in the outside world. Who are force-feeding them a diet of gratitude and happiness, without allowing them to feel, let alone voice, their confusion, their anger, their depression and sadness? Even the internet has no patience with second thoughts. When Marjory wrote something about her emotions on one of the online patient forums, she got furious responses. Death threats, even, which she thinks is hilarious, but troubling nevertheless. Richard does not even dare go there. With most of his friends now dead, he feels ashamed even feeling what he feels. He certainly is not up to blaming the world, which is Brett’s default setting. The only thing he wonders is if it would be possible for us, the outsiders, to refrain from judgment for a while and give them, the insiders, some time to figure out their new status quo.

That would help, he says. It really would.

Ingeborg van Teeseling

After migrating from Holland ten years ago and being warned by the Immigration Department against doing her job as a journalist, Ingeborg van Teeseling became a historian instead. She endeavours to explain Australia to migrants new and old at her website www.australia-explained.com.au, and runs www.lifebooks.com.au, telling people's life stories.

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