Survivor's guilt, body image and divorce: The side of cancer we don't talk about.

There’s a side of cancer that we don’t talk about. Instead, we colour it in pink and join fun runs in its honour. 

It’s survivorship. A word that a lot of those who’ve battled through the toughest fight of their lives often don’t wish to think about. 

Because beyond the fear that their cancer may return, there’s survivor’s guilt. And a crippling pressure to ‘make something of yourself’ after being given the gift of life. 

Watch In Her Shoes: Lead's Cancer Story. Post continues after video. 

Survivor’s guilt is a real issue for cancer survivors.

“The concept of survivor's guilt started with survivors of major natural disasters and wars, but not that much work has been done on survivor’s guilt in oncology,” Bogda Koczwara, a medical oncologist, and professor in cancer survivorship at Flinders University, told Mamamia. 

And there are multiple reasons for that. 

“One is that we don't talk about guilt in general,” Professor Koczwara explained. “Another is that it’s very hard for patients to talk about stuff they’re embarrassed about, so this doesn’t come to the surface.” 

Instead, cancer survivors are left to face survivor’s guilt alone, which can manifest itself in multiple ways.  

“Some people may feel guilty that they made it, while others did not,” the oncologist said. “Others may feel under significant pressure to do good.”

She pointed to a societal expectation that after beating cancer patients are “supposed to be quiet and grateful” and go back to being this “nice and happy” person as opposed to “brooding about mortality”. 

“There is a certain expectation of what sort of person you need to be, and very often the concept of surviving cancer means that you are a bit of a different person,” Professor Koczwara said. “And that may not necessarily be what people expect of you, and that can cause tension. 

“Some of that might be that you're supposed to now be healthy and invest in your wellbeing, or that you need to be a dedicated cancer advocate and carry the flag for cancer survivorship.

“There are certain expectations and people may find it difficult to talk about it because that may be perceived as ungrateful or inconsiderate.”

Another issue? The "unmentionables".

Tragically, survivor’s guilt isn’t the only issue patients are suffering through in silence. 

“One of the relatively common side effects of breast cancer is chest wall pain,” Professor Kocwara said. “Part of that is due to surgery — the nerves being cut — and radiotherapy.

“So many women who survived breast cancer have chronic pain of some sort but very often they don't talk about it, because they feel that they should be grateful that they've survived cancer.

“Healthcare providers also often don't talk about it, because they might think that their patients should be grateful that they've survived cancer, and in comparison what's a little bit of pain when you're cancer free?” 

Listen to the hosts of Mamamia Daily talk about a woman who found out she had cancer on the day of her hens party. Post continues after podcast.

She said collectively, as a society, we “tend to avoid the unmentionables”.

“It’s easy to talk about happy survivors who are cancer free, dressed in pink, advocating happily and living a healthy life because that's what makes us all happy,” Professor Koczwara said.

“But we don't talk about survivors whose body image may now be affected and they’re actually quite angry about it, or maybe they’ve gone through a divorce.”

How to ease survivor’s guilt?

It comes down to normalising the experience, according to the oncologist, including feelings of anger, guilt, distress and relationship tensions.

“It is recognising that the experience is complex and not necessarily straightforward,” she said, adding that we need to encourage conversations between healthcare providers and patients. 

“Or the conversations could be within groups of survivors, like through support groups, where there is room to say, ‘You know, I’m not happy with things’, and it’s okay to talk about it.” 

But at the end of the day, Professor Koczwara encourages her patients to focus on what they have achieved. 

“I say to them that this is one of the most difficult experiences of their lives and the act of surviving is a phenomenal accomplishment in itself that really showcases the enormous strength that they have within them,” she said.

“People often tend to focus on the difficult aspect of the experience — perhaps the feeling that it’s not easy to talk about or the frustration that it’s not as straightforward as they’d hoped. 

“I would like them to refocus on the strength that they have within them, what they have overcome and how far they’ve come, and channel that strength to give them confidence that eventually they will be able to overcome the challenges that they're facing.” 

Image: Getty + Mamamia.