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The number one enemy is stigma. Why? Because I almost killed myself and also I’ve seen people killing themselves because of the stigma. The stigma started with me, myself when I’m going through the treatment and mostly with the community.
My name is Milicent Kagonga, I live in Kenya in Nairobi City. I was 25 years old when I found out I had stage four cervical cancer. Before I was diagnosed, I suffered for five years with abnormal vaginal bleeding and discharge. I didn’t know what was wrong with me. Living in the slums of Kenya the people in my community are very poor and are not educated about the diseases like cancer. There is a stigma associated with diseases that people are ashamed to talk about it. Many people think sickness is cast or witchcraft or sins that need to be forgiven. I could not afford sanitary towels and had to use rugs and my T-shirt. I tried to keep it a secret, but it was hard especially because I shared a common bathroom with neighbors. My marriage ended because my partner did not understand. I had three children, and my family was starving and suffering. My second born child died when she was only four years old. It was a very traumatic time for me. I was lucky to find an employer that allowed me to live with her. She gave me the love I so desperately needed, but I had to leave my children in the village to go to school. I relied on the kindness of the teachers and others. Finally I felt brave enough to tell my employer about my condition.
I saw someone on television talking about the signs and symptoms of cervical cancer. I decided to go for screening at the first facility. I was turned away. They said I was too young to have cancer at 25. Then The WHO guidelines recommended screening women at the age of 35 and above. They did not realize my symptoms made me a priority for screening. So I went to another facility and insisted to be screened. I found out I had stage four cervical cancer. I was devastated. I thought about ending my life – killing my children and then killing myself. I thought there was no hope left and I never wanted to leave my children struggling the way I struggled.
But then I did find Hope. first in the kindness of my employer and then in the kindness from other patients. I decided to go for treatment and slept in the hospital corridors with the other patients. We formed a small community to support each other with travel and other basic needs. If I have this community leave out my neighbors, leave out my families, because my families were saying very nasty things. So I said I’m going to make sure I’ve given hope. I have given someone hope even if it’s just little. And from that process I learned that not every patient needs money in times of going through the treatment. Some of the patients just need a shoulder to lean on, some of the patients just need someone to listen to, some of the patient just need someone to cry with. We are lacking those persons in our community. I told myself I’m going to change that narrative.
I started to form a vision and a purpose to help others the way I had been helped. I never want anyone to go through what I went through. Not even my worst enemy. The stigma I went through was a nightmare. I’m no longer embarrassed and ashamed to speak about my body and my experience. I’ve learned that going through cancer is one thing, but now surviving is another thing. Being a Survivor and dealing with what comes after cancer, I feel is it my duty to help others so they have it better than I did. I started inviting patients to my one room home. So many are women forced out of their marriage because of the stigma of cervical cancer. Together we do bead-work, thread-work, crotchet-work as we go through emotional healing. We make and sell carpets to support our needs.
We started as three women and now we are about 400 cancer patient and survivors meeting at KOB Bangi North Health Center. When they see me, a cancer survivor, speaking out and being joyful, they say I am a symbol of Hope to them. We are now officially registered as Community Based organization called Symbol of Hope Warriors. We are dedicated to improving the lives of people with cancer and reminding them that they are beautiful, precious, and loved. Now that you have the power to influence others and be a symbol of hope. Sometimes the changes are slow but we have to keep going not just for ourselves but for those who come after us.
I urge those of you listening to this to help me achieve my vision. Please hear some of the things I have learned.
- We desperately need education and compassion in our communities
- Speak up to an stigma and raise awareness of cancer symptoms
- Get involved in peer to-peer support groups. Changes everything. Find one to join and if there is not a group available to you, see if you can start talking to other patients and start small.
- Newly diagnosed patients: get health insurance. It is worth it when you are going through cancer treatment.
- Get educated about prevention and go for regular screening. My daughter was the first one to be vaccinated against HPV in Kenya and I’m proud to say that.
- Learn about the vaccine and have your children vaccinated.
- For women going through radiation, learn about after care needs. When a woman is having radiation for cervical cancer there will be changes in the body.
- Remember that you are beautiful, you are precious, and you are loved. You are strong. Do not give up, do not give up hope.
