WHILE undergoing radiation therapy for cervical cancer in 2019, Karen Nakawala formed a sisterhood with fellow patients, but not all of them had the support they needed back home. She recalls how a certain woman went home after treatment one day only to find that her husband had moved her belongings to the spare bedroom and invited another woman to their matrimonial bed because he was “unable to have sex with her”!

Another woman, she told me, believed that she did not have cancer. “My husband has a girlfriend who bewitched me and now I never stop bleeding,” that lady told Karen.

Stories like these which made her realise that most women were being treated for a condition they did not understand and that unfortunately, some women were having to deal with not just cancer, but also some insensitive family members. While Karen herself says she was in denial the whole time she was undergoing treatment, she was grateful for one thing, she had a solid support system which made her life easy. Eventually, she decided to become an advocate for cervical cancer screening and HPV vaccination among young girls. To do this effectively, she had to make her journey of fighting cervical cancer publicly known, which in my opinion was very brave, given the fact that most people in our society are uncomfortable discussing anything shrouded in promiscuity misconceptions, or even just nudity for that matter.

And according to recent statistics compiled by the ICO/IARC Information Centre on HPV and Cancer, Zambia has a population of 5.75 million women aged 15 years and older who are at risk of developing cervical cancer. Current estimates indicate that every year, 3,161 women are diagnosed with cervical cancer and 1,904 die from the disease.

Recently, Karen was given a special recognition award for her work in this space by Cowep, an institution in Uganda, during the African Women Summit. But before we delve more into her story, I can’t help but wonder how just in 2019, the equipment at Cancer Diseases Hospital was working perfectly and other countries in the region used to send their cancer patients here, but now, it is a horror story.

Karen herself recalls that it was as though she just blinked and the treatment was over.

“I was lucky that at the time I was diagnosed, everything at the hospital was working perfectly. So between my diagnosis and starting treatment was less than a month…and I think that helped with my mental state because you can imagine someone tells you that you have this life threatening disease and then you’re not getting help, I think that’s what takes a lot of people quicker than the disease itself…[sometimes I’d forget what I was going through]. I was always working, it was that time that we start to prepare for Fashion week and I didn’t tell anyone at the office. I kept working and attending meetings. I think I was in denial…We had the biggest fashion show ever just three weeks after finishing my treatment,” she says.

“During my journey, I noticed I had never met a cervical cancer survivor, I had met breast cancer survivors, but not cervical cancer. I realised it was because of the stigma that was attached to it. As you know, everything that is below the belt of sexually related, we don’t want to talk about it and we start pointing fingers and accusing somebody without realising that it could happen to the most innocent of souls.”

She said shortly after completing treatment, she passed on an opportunity to go and speak at the UN General Assembly because she wasn’t ready.

“I didn’t believe what I was going through, I was motionless. Some days I’d wake up and I’m moody, because with the treatment, menopause sets in immediately and you know what comes with menopause so I told her [the doctor who offered the opportunity] ‘I can’t, I’m not ready because I have not even accepted that I’m going through this. So until I accept, that’s when l’ll be able to speak about it positively and maybe put the message across the way that you want it to be’,” she says.

Eventually, Karen was convinced that God gave her a second chance at life to save other women’s lives, and so began her advocacy journey.

She set up a group called Teal Sisters on Facebook and within a month, it had over 100,000 women who were hungry for information.

“I had not yet told my story but the minute I said I just survived cervical cancer, then everyone could relate because you put a human face to it. And this is a face that is known so people say if it happened to her, it can happen to me and the rest is history. That’s how I started advocacy. It’s now become my full time job,” Karen says.

However, she says now that the equipment at CDH is obsolete, she feels like a hypocrite when she tries to comfort a patient or their families.

She says nowadays, she’s just honest by advising people who can manage to raise funds for treatment abroad.

“I think what people don’t want to accept is that we’re in a crisis when it comes to cancer and until and unless we admit that we are in a crisis, that’s when we’re going to do something about it. It’s one thing receiving reports that ‘this is not working’, it is another thing living that experience. If you haven’t walked that road, you’ll just brush it off. And you see, cancer is not like malaria where you say it’ll take so long to be treated and it’ll be completely eradicated from your body. It’s different…And cancer feeds off negativity, it’ll take you before you know it. So it’s difficult to even tell someone who’s been diagnosed with cancer now to say ‘be strong, you’ll be fine, how do you start? Because they look at me and say ‘you were lucky’…And when I have to do that, I feel like a hypocrite,” Karen says.

“So until our leaders prioritize health, that’s when we’ll be on the right track, I’m not saying they haven’t prioritized it but it’s an immediate urgent need in order for us to save lives. Look at how many people are dropping dead. When I open my Facebook messenger, it’s full of people that want assurance, they want help and they think you can help and I don’t have anything to say to them. The best I tell them, when somebody tells me ‘Karen, my aunt has been diagnosed with cancer’, I tell them if you can find money, find money and go to Tanzania. Because cervical cancer, the treatment is radiation. So you just have to be honest. I think what is lacking from the leadership is lack of honesty. I think there’s been no communication to the people. What we hear, we just hear from the corridors. We don’t have clear cut communication on what is happening, I think the Zambian people deserve that…give us timelines.”

She laments that screening numbers have now gone down because people fear that if they are caught with cancer, there’s no treatment available.

“Right now, the screening numbers have gone down, it’s become a barrier to screening because women are asking, “if I am found with cancer, what are you going to do with me? I don’t have money to go to India, I don’t have money to go to Tanzania to go and get treatment’. And what is so hurtful is that our friends are able to send their relatives out for treatment because they can afford it but how many Zambians can afford to take themselves out of Zambia for treatment or their relatives? So I think we need some clear communication lines. There’s nothing we can do, we don’t have [machines], we don’t have. But I think the people deserve to know the truth of what is happening,” she says.

“Sometimes I just feel like giving up! I say this is too much, I can’t be surrounded by so much death when it’s unnecessary, when someone can do something about it. It’s difficult to give hope when you don’t have hope, but you have to do it. You have to tell someone that it’s going to be okay…but it’s so hard to do. You’re telling someone they’re going to be okay but are you even believing what you’re saying yourself? Sometimes I feel like I’m drowning. But I have to keep on going, to help people…but not all hope is lost, government is doing the best it can in the most difficult of situations. I think the only thing that is lacking is communication.”

Karen eventually spoke at the UNGA in 2021 when she was ready, and she’s spoken at many different platforms, helping women to understand that there is life after cancer.

“It’s not a death sentence, it shouldn’t be,” Karen says.

“People are thriving after cancer, they are living and we need to see those stories because they encourage people to survive and to thrive.”

To close today’s article, I’ll leave you with some advice Karen gave about how best to support loved ones who have been diagnosed with cancer.

“Support friends, support family when they are diagnosed with cancer, don’t walk on eggshells when you are around them, don’t start choosing what to say or what to do, carry on with your life, they need to feel they are still normal. I remember the one time I had a UTI towards the end of the treatment and I had to be hospitalised, I told my sisters, don’t tell nobody that I’m in hospital. Somehow, my sister told my mum’s friend and she came to the hospital, she walks in there, and I am talking with my friends, we are joking, this woman walks in there and she’s looking miserable and I can see she has tears in her eyes. I look at her and say ‘mum, what is it? I am fine’. I don’t blame her because she was probably thinking, oh, this child is dying. And I think that’s why it’s so difficult for most people to open up and say I have cancer because you don’t know how people are going to react. So it’s very important that you keep the positivity going, protect them, be yourselves. Of course don’t get careless and go near a cancer patient with a cough because their system is already compromised, but just give them the support that they need,” says Karen.

“Don’t stigmatise, don’t point fingers, cancer does not choose; you have money, you don’t have money, cancer does not choose.”

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