Meera Shah is an Associate Postgraduate Dental Dean at NHS England in the east of England and a board trustee at the charity National Voices. She lectures on various cancer and healthcare Master’s courses in the UK on the topics of living with cancer, and the wider impact of the disease.
In this interview with iGlobal, she shares her insights on the importance of breaking down barriers within the British Indian community around cancer, why it’s such a taboo subject and how her personal journey informs her work with healthcare charities.
Why do you think cancer is an even more difficult subject to confront within Indian communities?
Hearing about a cancer diagnosis strikes fear into many. Most people instantly think of death and suffering when they hear the word cancer. It's not talked about openly enough, without negative associations, which I think stops people from talking about their own diagnosis. I feel many worry what others will say if they know about a diagnosis. With the rise in incidences of cancer, most people will know someone who has been affected by cancer. Lives can be hugely affected permanently, making it a challenging and emotional topic to talk about. Many surveys have shown that it still seems to be a taboo topic in many communities.
How does your personal journey inspire your positive interventions on this subject?
I was diagnosed with a rare form of blood cancer 13 years ago, just after the birth of my child. I was treated with radiotherapy for this but left with life changing side effects which meant I couldn't live or work in the same way as before. A few years later the cancer progressed and I needed more treatment in the form of chemotherapy and a stem cell transplant.
Since then, I have been on maintenance chemotherapy to keep the disease under control. Whilst I had a lot of support from family and friends whilst going through treatment, I found it an incredibly lonely place to be emotionally. I didn't know how to navigate being a new mother and how to deal with the challenges of cancer treatment as well. Hence, I felt it was important to share my story and get involved with charities to support others with the experiences I'd encountered. I also feel it's important to discuss the impact of a patient’s cancer on others as well.
I volunteer for the charity Shine Cancer Support, which supports young adults in the UK with cancer, and I lead their Diversity network, supporting those from minority ethnic backgrounds. I deliver training to healthcare teams within the NHS and on healthcare courses at UK Universities, where I discuss the lived experience of patients with cancer, and how healthcare practices can be improved to support patients and their families more effectively.
MORE LIKE THIS…
Do you think the royals speaking out about their diagnosis has a positive impact?
I think it's great to see all those in a position of influence talking about their health challenges. The more open we all are, will break down the taboos over time, as people become more informed. I know the ‘Kate effect’ did lead to a rise in patients presenting to their doctors with symptoms of cancer. That's a good thing.
Her disclosure also resonated with many on what the impact of her diagnosis means for the children. This is something I also try to highlight as the people around us also need support, not just the patient.
MORE LIKE THIS…
What is your message for those out there finding it difficult to open up about cancer?
Find someone to speak to. It doesn't have to be a family member or friend immediately: it could be a health professional or a charity. A cancer diagnosis and the associated treatment is hard enough to go through, let alone trying to keep it hidden and managing it alone.
For those at the listening end, be open and listen to your loved one. You don't need to be the one to make it all better, that's what the healthcare teams are for. You just need to listen and be there to show your loved one that they are not alone. Sometimes it's difficult to find the words to respond to someone who's just told you about their cancer.
It's OK to say something like 'I'm so sorry to hear this, I don't know what to say'. You could ask them what they'd like in terms of support. If you can't help, could you find someone who can? Take the lead from the other person. Sometimes just being there with a listening ear is enough.
Many people try to find a reason or a cause for their cancer. I don't think this is particularly helpful, as in most cases there is no cause. Let's try to break down taboos and barriers, and just be there for each other with compassion. Find ways to help without offering unsolicited advice. Ask them how you can help.
Macmillan is one such cancer charity which also provides A to Z symptoms cards in different Indian languages including Punjabi, Bengali and Gujarati.
Claire Taylor, Chief Nursing Officer at Macmillan Cancer Support, said there are several reasons why people from South Asian backgrounds may feel unable to talk about their cancer diagnosis.
She said: “We know some people may not talk about it because of a perceived stigma about the disease, while others can find that talking about cancer within the community is considered shameful. This can sometimes be due to certain religious beliefs around the cause of cancer.
“For others, cultural considerations impact whether they feel comfortable discussing their diagnosis, such as perceived expectations on men in the community to be seen as ‘strong’ and ‘stoic’. South Asian women can also be reluctant to discuss or present symptoms linked to stereotypically-defined ‘women’s health issues’, especially with male healthcare professionals, due to a fear of shame.
MORE LIKE THIS…
“These factors, combined with an apparent lower awareness of cancer and its symptoms across the community, can mean that people from a South Asian background may not seek help as soon as they notice a symptom of cancer. But it’s really important that if people notice a lump or bump, or unexplained pain or bleeding, they visit their GP as soon as possible. People cope with a cancer diagnosis in different ways and, whether people decide to talk about it with their loved ones or not, the Macmillan Support Line is open 8am-8pm every day, to provide vital emotional, financial and practical support.”
*Info: Myeloma_Mummy; Macmillan
