• "I would say that most of the support I received during my treatment was from my Australian friends." (Supplied)Source: Supplied
As expected, my parents decided to not tell our relatives and friends about my cancer, to both protect me and our family’s reputation.
By
Esther Xu as told to Elli Jacobs

19 May 2020 - 9:41 AM  UPDATED 19 May 2020 - 11:27 AM

When in 2016, age 34, I was diagnosed with non-Hodgkin's lymphoma, a cancer of the lymphatic system, I was scared to call and share the news with my parents who lived in Shanghai.

I migrated alone to Australia in 2007 on a working visa. I’m a mechanical engineer and when my company in China offered me the opportunity to work in their Melbourne offices, I jumped at the chance.  It’s considered a great honour for an Asian family to have a child working overseas earning good money.

Prior to my cancer diagnosis if I was ill or something bad happened to me, I wouldn’t tell my parents but because cancer is so big, I couldn’t hide it from them. 

The reason is twofold. Most of us are born under ‘One Child Policy’ and as an only child I carry the obligation of looking after my parents when they become elderly. So naturally me having cancer presents as a potential threat to their future safety. 

Secondly, my parents and their immediate community practice a version of Buddhism where karmic superstitions and respect for ancestors make a family’s reputation way more important than that of the individual.

Essentially, my parents believed that the immoral behaviour of a person in a past life is the reason they get cancer, or that an ancestor’s misconduct causes incurable illness or bad luck to their descendants. This accumulates as ‘bad karma’ and cancer is the punishment.

This accumulates as ‘bad karma’ and cancer is the punishment.

Another reason can be fate which translates as ‘god’ wants your life to end. This sometimes stops people from getting the prevention screening or treatment in time, but also takes people’s power away from healing.

My family have been quite successful in business and are highly respected in their community. I felt if family or friends were to find out I had cancer they would begin to think perhaps my grandparents did something wrong when running their business and that bad karma had transferred itself to me. Hence it became vital for me to protect my family’s good name.

Ultimately I had to let my parents know, but instead of calling them myself I rang my best friend and asked her to visit my parents and give them the news. When she left their place, she sent me a text message and I rang my mum.

The first thing she said to me was ‘we’re one family and we’re going to get through this together.’ I began to cry and immediately felt the burden I was carrying all these years of only being able to be good, only being able to show good things to them and never disappoint them suddenly release.

The first thing she said to me was ‘we’re one family and we’re going to get through this together.’

As expected, my parents decided to not tell our relatives and friends about my cancer, to both protect me and our family’s reputation.

As a result, I had to make up all sort of lies which made me unable to show my emotions and ask for help. Whenever I wanted to show my parents that I was sad or feeling low they would tell me to be positive, not to cry and be strong. Overall, they didn’t allow me to release my emotions. 

The most challenging impact of this secrecy was when during my recovery my grandfather became very sick. Although I wanted to see him, I was extremely weak to travel and when we spoke on the phone, I had to make up all sorts of excuses of why I couldn’t come home to be with him.

It was heartbreaking thing to go through. When my beloved grandpa eventually passed away without him knowing I had cancer, my parents initial ‘good intention’ made me feel even more ashamed and fearful. I do feel my grandpa didn’t resent me for not seeing him one last time, but I do carry that regret with me.   

When mum came to stay with me in Melbourne for a year during my treatment, I noticed that even then she wouldn’t say the word cancer in front of me, even until today she doesn’t utter that word.

Dad’s similar to her. He doesn’t like explaining things to people and since my illness we have very little emotional communication – he only asks if my health is OK.

I would say that most of the support I received during my treatment was from my Australian friends.

During my treatment at the Cancer Center I met a lot of Chinese patients who shared similar beliefs and experienced the same isolation.

That got me thinking that somehow, I could help. I became a volunteer at the hospital as a language translator but I also became a listening board predominantly for the older generation Chinese patients who like me felt they couldn't share their emotions with close family members.

I've seen quite a few older generation Chinese patients simply give up to their fate, sometimes signing their own death sentence. They refuse all support and don’t want to meet people as the only thing they expect to happen is to die.

Unfortunately, in my experience, the older generation is still trapped in these old beliefs and are most affected.

Unfortunately, in my experience, the older generation is still trapped in these old beliefs and are more affected.

I hope by sharing my story I can help break the cultural stigma around cancer, especially with the younger Chinese generation, who are more open to the consequences of this disease. I hope they feel inspired and remain hopeful, even though the older generation discourages me by saying that I will offend people.

I really hope that my community will continue to get preventive screening and treatment so they can live healthy and productive without the shame and fear I felt.

When I recently quit my job to become a public speaker and began to share my experiences, my father didn’t speak to me for months. But I plan to eventually go home to Shanghai to visit them and explain to them why I want to do this. I know I will hurt them, but I hope in the long-term they’ll be able to see this from my viewpoint.

I now realise it’s not their fault. This is the way they were raised, and I no longer hold a grudge towards them. I’m more compassionate.

I’m now in good health and what cancer has taught me is that the illness was a result of a disconnection between my true self and my body, and now that I’ve reconnected with myself I want to be a voice for the Chinese community to end this stigma.

If we can more openly talk about this subject, and connect with each other, it will reduce isolation, and promote healing.

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