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When Zahida discovered she had cancer, it was difficult to find support amongst friends and family because it was seen as a taboo topic. She tells us why she’s now keen to share her story and change perspectives within BAME communities.
I was 36 years old when I found the lump. I was on holiday at the time, so I called my sister to book an appointment for me. When I went to the appointment on my return, I wasn’t concerned, and neither was my GP. After a biopsy and further scans, I was diagnosed with triple negative breast cancer.
Nobody expects that news. I'd not had anyone within my vicinity – both family and friends – who'd had breast cancer. It just wasn’t on my radar.
It came at a time where, seemingly, things were going well for me. I'd just completed my family, I'd been promoted, I was enjoying my time off with my boys. To say my world came crashing down around me would be an understatement.
I needed a lumpectomy, which felt straightforward. Lymph node testing showed it had spread there however, so I had to go in for more surgery. Nobody explained at the time that my arm would be out of action afterwards. My younger son had only just started walking and needed constantly picking up, which was quite difficult.
I knew the only way I could get through it was to just make myself frantically busy. I decided to go back to work during my treatment.
I tried to maintain a positive frame of mind and tire myself out so much that, by the time I’d got in from work and sorted the kids out, I would just zonk out and go to sleep. I figured that I would have fatigue and other side effects, but at least I would be too busy to ponder and worry about it.
Sometimes it worked, sometimes it didn’t.
When you get diagnosed with something – be it cancer or something else – you tend to gravitate towards people that are like you. When I was told I had breast cancer, I couldn’t find anyone else.
This is because there is a taboo surrounding cancer in BAME communities.
Twenty-eight years ago, my father was diagnosed with cancer, and he passed away quite quickly. I was 18 at the time, and I vividly recall being told not to tell anybody that it was cancer, and that he’d had some other illness. I never understood it, and I never had time to process it due to the enormity of what I was going through.
When I was diagnosed, I was told the same thing. At that point, I really tried to understand it, and I got to see this taboo. Cancer is always associated with fatality – even though, with breast cancer, statistics show that there is a high survival rate.
I’ve come to realise now that there are a few people in my wider family who had gone through cancer but hadn’t spoken about it.
Not seeing others like myself affected the kind of support I was able to access.
For example, I knew I was going to lose my hair, so I contacted a charity who provided me with a list of wig outfitters. When I went along to one of the places, the attendant kept showing me wigs that are very big and bulky, but Asian hair is very fine, so it didn’t look right on me.
When I mentioned this to the attendant, she snapped at me. I felt like crying, but I couldn’t because my sisters were with me, and I didn’t want them to see it.
After, we went and found a store that happened to be run by two black women. When I explained what I wanted, they were able to find something immediately. What they picked out felt so much more natural for me. They also explained that, if I found the wig to be too thick still, I could take it to a salon and get it thinned out - which is exactly what I did.
Having something that helped me resemble my old self made my experience so much more bearable, but the list of outfitters that I’d been provided with did not include a single BAME-run business.
I had been let down, partly because the organisation did not represent the people they help, but also because BAME people had not been speaking about their experiences enough for them to realise it was a problem.
As I couldn’t reach out to my family support network, even though we’re usually very close, cancer was the loneliest period in my life. Had I not stumbled across the Someone Like Me service, I don’t know how I would’ve got through it.
I was able to speak to Gillian, a lovely lady from a BAME background with exactly the same diagnosis as me. I cannot begin to tell you the impact that first call had on me. I went from thinking, ‘How am I going to get through this?’ to ‘if Gillian can do this, so can I.’
I felt like a huge weight had been lifted off me. I was empowered. I never looked back from that moment.
Gillian’s influence also encouraged me to become a volunteer myself. Quite often, people from BAME backgrounds are reluctant to seek help, but the way she helped me made me want to help others.
Since becoming a volunteer, I have supported over 100 women, and I was recently told that 10% of those women have then gone on to become volunteers themselves.
It wasn’t easy for me to start talking about this, and even after seven years I was worried that I would be letting down my people and my culture. I was scared stiff of what my mum might say.
But I felt I had to do it, because it shouldn’t be a taboo, and I can’t break that down if I am not willing to talk about breast cancer myself. A friend of mine compared it to a sort of ‘coming out’, and that really is what it felt like for me.
There has been some progress since I was diagnosed, and I know that, within Breast Cancer Now, volunteers are being trained on the issues that affect BAME people. But it’s still baby steps. The issue is still very much there.
To anyone from a BAME background going through breast cancer, I’d like to mention how important it is to seek out help from other resources, because sometimes we don’t get the family or community support we need.
Breast cancer is such a difficult thing to go through anyway, but doing it alone compounds all those difficulties. You’re not letting yourself or anyone else down by seeking help. What you’re going through is enormous, and you do not have to do it on your own.
Thanks to people like Zahida, we are able to offer support for people who might otherwise find it difficult to open up about their experiences. If you'd like to share your story and help others in your community, we'd love to hear from you.