Assuming the worst

Cultural background matters

Many South Asian families have preconceived ideas about cancer that come from stories within their own communities—for example, if one person has had a poor prognosis from cancer, it is assumed that any other person diagnosed with cancer will follow the same path. These assumptions are often made without adequate knowledge or information about treatment options and prognosis. The word cancer often carries a stigma, and some people have their own beliefs about why the cancer has occurred—for example, lifestyle and “karmic consequences” are considered contributing factors.

During my treatment, I believed that everyone would assume the worst about my diagnosis, which would give me little hope to focus on. Finding ways of engaging with people from different cultures, who may process information in different ways, is important. Healthcare professionals can better support South Asian families by being mindful that the families might assume the worst when faced with a cancer diagnosis because of stories from within their community. Communicating facts about the treatment and diagnosis sensitively can help demystify false ideas. For me, the most productive consultation was before surgery and I would have welcomed the discussions which took place then sooner. Being open about the uncertainties will also help patients and their families to better understand the diagnosis rather than presuming the worst.

What carers need to know

My husband had no choice but to find out more from various sources, which increased his stress further. He started searching online for information on the management and treatment of my cancer, particularly what might be expected of him after surgery. He needed someone to talk to about what to expect after my surgery and information on what was expected of family carers. One source that he found helpful was the Oesophageal Patients Association (www.opa.org.uk), where he was able to read about other patients who had gone through what I was about to experience.

My mother received the information from my husband. She was looking for guidance on how to care for me after surgery, in understanding my symptoms, my functional limitations, and my complex needs, particularly around food and drink. Up until this point, her denial of my diagnosis became her coping mechanism.

After an eight hour operation and several weeks in hospital, we were told that although no further treatment would be required at this stage, regular monitoring would be needed. We have got this far as a family by supporting one another through a long and difficult recovery period. I hope that our community will now see that the worst should not always be assumed.