When I Got Cancer, My Mum Didn't Know What It Was

Cancer. Not a word I thought I’d have to deal with at 29 years of age.
I was diagnosed with stage four non small cell lung cancer in April this year and in that moment, my whole life changed. I’d always been fit and healthy. I was active, ambitious and career-driven. I began experiencing upper back pain in March – the first symptom that anything was wrong – but I just put it down to my busy lifestyle. Within a couple of weeks, my upper chest was visibly swollen; this is when I knew something wasn’t right. The swelling got so bad I was struggling to breathe and so, at the recommendation of my GP, I made a trip to A&E. My partner and I were even joking in the waiting room, laughing at how my appearance had changed so significantly, as my face had swelled up too. We didn’t expect to hear the word 'cancer'. My diagnosis came as a complete shock to me, and my family.
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I’m a second-generation immigrant. My mother was born in Pakistan and came to England in the 1980s. In south Asian culture, people are determined to present the very best versions of their lives. Perception is everything. Talking about health is a massive taboo, because this goes against everything they believe in. Illness is not part of the picture.
Health issues are often hidden and rarely discussed. You’d only hear of someone’s ill health in a gossipy context. It’s always through word of mouth, never directly from the person or family. This is why I believe there’s such a gap in south Asians' knowledge of health. They don’t want to accept that diseases like cancer can happen. Growing up, this mentality rubbed off on me. I just assumed cancer was something that would never affect me. My mother didn’t even know what it was.
Yet now I’m a 29-year-old living with cancer. How do you explain to your mum, the woman you worship, that you have an incurable disease? One that she’d never even heard of? I really struggled to deliver that message. Translating the severity of my situation was so difficult. I almost envied her ignorance of the disease. The turning point in her understanding came when she said: "The spots are inside you." She was talking about my tumour.
I felt like I was letting my family down when I got my diagnosis. The mentality of shame is so prevalent in south Asia when it comes to illness and I had this outlook ingrained in my mind. Bound up in this are the implications of growing up as a second-generation immigrant. Coming from an immigrant family, you’re constantly having to prove yourself and your worth to society. I didn’t want to appear weak. Thoughts were constantly swirling in my head: What will people think, what will they say? I even suffered post-traumatic stress in the weeks following my diagnosis. The reality of my situation, though, was so far removed from the feelings that had dominated my mind. I've been lucky; my family have been so supportive, as have my friends. I have an incredible support network.
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Before my diagnosis, the C-word had never been discussed in my family. I didn’t know anyone with cancer, it wasn’t hereditary and because I was so young, it wasn’t even remotely on my radar. Since I opened up, my aunt revealed that her mum had breast cancer, twice, in the past two decades. We had absolutely no idea. They’d kept it to themselves, not only while she was going through treatment but in the years since, when she’s been in remission. She also disclosed that her father, who recently passed away, died of bone cancer. Bad situations just aren’t discussed, even in the closest of families. I was truly astonished.
Now that’s all changed. I feel so passionately about encouraging people, especially those from an ethnic minority background, to step forward and tell their stories. Women have a hard time in south Asian culture. There’s a cultural conditioning, whereby women are seen as inferior to men. I want to change that, to help women feel able to speak out and share their experiences. To break the taboo surrounding health in south Asian and immigrant culture.
Photo: chazz adnitt
At the recommendation of a close friend I decided to start a blog: Curry and Cancer. My mum and I set up a restaurant, Masala Wala, in southeast London almost four years ago and being able to combine my two worlds – as a restaurateur and cancer patient – has provided me with a sense of normality again. More conversation is needed to break that shame mentality. I wanted to show people the realities of living with cancer and that a diagnosis doesn’t have to define you. It’s been so therapeutic for me, and my family have been incredibly encouraging. It’s been healing for all of us, to be able to talk more openly and share our emotions.
I still wake up some mornings and can’t believe that cancer has happened to me. It’s extremely rare for someone my age to be diagnosed with lung cancer; the majority of people are over 60. But cancer is a disease that is faceless, raceless and ageless. I’m slowly learning to live with it. At the moment my health is stable, and I'm receiving palliative treatment in the form of targeted therapy. I take a chemotherapy pill called afatinib and I’ve had substantial tumour reductions. I’ve even managed to start exercising again. I also recently got married to the love of my life. It’s not how I expected to be going into my 30s, but I’m going to work with the situation I’ve been given; as a British Pakistani restaurateur with lung cancer. I’m determined to live my life.
Saima is supporting Stand Up To Cancer, a campaign from Cancer Research UK and Channel 4 to accelerate groundbreaking cancer research and save lives. Check out her blog here and her restaurant here.
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