Naveed and his wife, Naveen, talk in their mother tongue, Urdu, about Naveed's diagnosis and some of the stigmas still prominent in their community.
This video is part of Macmillan’s mother tongue project, (4 minutes and 19 seconds). We hope to feature different lived experiences here on the Online Community to represent different ethnic cultures and communities, so nobody feels they are facing cancer alone.
Please see an English transcript written below. There are also English subtitles available when watching the video. For additional support information in other languages, scroll to the end of this blog page.
Naveen: “Because treatment was so delayed, it felt like at any time, it could be his last night or last day for us. So that was incredibly hard. I wish I was stronger at the time.”
Naveed: “My name is Naveed and I have a rare heart cancer. I was diagnosed in 2016 and this is my wife, Naveen.
Since I was diagnosed with cancer in 2016, I would say that life is still the same but the way I view things has changed.
My cancer is so rare, with only 300 or 400 people in the UK with this particular cancer and my background and upbringing are also very different from most people. It wouldn’t be wrong to say that this cancer was a blessing for me because it has given me strength.
This cancer is a very big blessing from Allah, that only I can understand and no-one else can.”
Naveen: “There was such a change in you. After the cancer you had such strength in you and I don’t know where that came from.”
Naveed: “It did, it did. Now or never.”
Naveen: “And you said It’s now or never, I’m going to die one day, so why live like this. From now on, I want to live for myself as myself.”
Naveed: “One day I was at the local mosque, and after the prayers I spoke to the Imam about my cancer. He said that my cancer must have come about because of something I had done in the past for Allah to do this.
I asked him straight away- ‘what about a 10 year old child with blood cancer? What did a child do to deserve it?’
The Imam fell silent and had no response to give me.
I asked him- ‘was it because I was an adult that he gave this sort of decision?’ Since that day I decided to not return to that mosque and have my prayers led by such an ignorant person.”
Naveen: “We couldn’t even have predicted it but the cancer was big turning point for you and that your life was in your hands.”
Naveed: “In my hands and I won’t give it to anyone else.”
Naveen: “And the fear of what people would say in the community has finished, completely finished. Think about yourself, and do what you want, you always say. Think about yourself, your family, immediate family…”
Naveed: “That’s right”
Naveen: “When Naveed was diagnosed, even though his attitude was positive, at the same time, because the kids were young, I felt quite weak. But seeing Naveed gave me lots of motivation. So many times, I have sat alone and cried.
Because treatment was so delayed, it felt like at any time, it could be his last night or last day for us. So that time was incredibly hard. I wish I was stronger at the time.”
Naveed: “If I was given the chance to do things differently, the first thing I would focus on my identity and build on my personality. The point of this is that in life, it doesn’t matter if you are 50 or 100, you don’t want to leave this world. Life is very beautiful. So, you must live how you want to live.”
Additional support information
If you’d like to be a guest blogger for the Online Community and share your personal experiences in Macmillan’s Community News blog, please email Community@macmillan.org.uk.
