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Lydia spoke alongside (L-R) Holly Kuzmich, Executive Director of the Bush Institute, Kathleen McLaughlin, SVP and President Of Walmart Foundation, Deborah Birx, M.D., U.S. Global Aids Coordinator, and Gunilla Carlsson, Executive Director of UNAIDS.

Cervical cancer survivor Lydia Musonda shares her story at Concordia Summit

September 26, 2019 by Crystal Cazier
and Jenny Albertini
Lydia, a 29-year-old entrepreneur and mother of two from Zambia, is a beneficiary of PEPFAR and Go Further programming. She shared her story with Global Health Program Manager Crystal Cazier and PEPFAR’s Senior Advisor for HIV Prevention and Maternal Health Jenny Albertini before joining Executive Director Holly Kuzmich, Amb. Deborah Birx, and others for a panel discussion on ‘Healthy People, Healthy Economies’ at the Concordia Annual Summit.

Crystal Cazier: Tell us about your life and what’s important to you?

Lydia Musonda: We have five people in my family, and I'm the first born. I'm a mother of two – a boy and a girl. I live with my mother. This is my first day to be here in America. I'm so, so, so happy to be here.

CC: How old are your children?

LM: The first one is 15. The second one is eight.

CC: Congratulations. And tell us about your business?

LM: I started my business in 2014. The name of my company is Melbotech Safes Engineering. We manufacture security products such as money safes, vault doors, fire-safe cabinets, security boxes, etc. In Zambia there are few companies that make these products, so I decided to start this business so that I can contribute to the economy of our country.

CC: How many employees did you start with, and how many employees do you have now?

LM: At first we started just two of us, and now we have seven.

CC: That's impressive. So we know you've come here not only as an entrepreneur, but as a survivor of cervical cancer. Tell us about your journey.

LM: I didn't know about cervical cancer. I just thought I was feeling weird. I was seeing blood, and it was very smelly. I didn't know what the problem was until I spoke to a friend who learned about the symptoms of cervical cancer in school. She told me she thought what I was experiencing may be cervical cancer and advised me to go to the clinic to get screened. I was a little bit nervous just to hear the word cancer, but I said okay, let me go check.

I went for screening, and they did the biopsy and gave me a sample to take to the lab. After two weeks they told me I had something on my cervix that looked like cancer and told me to go to the hospital to do a CT scan. When I got the results, it said I had cancer that had moved to the ovary. I didn’t know what to do. I was alone. I had no one to talk to, no one to encourage me. I was broken, devastated. I thought this was the end of me.

My mother didn’t take it easily. She broke into tears. I just said, mommy, I need you to give me strength so I can beat this cancer. So we knelt down and prayed about it. My family was there for me. They told me to start the treatment right away.

I went back to UTH [University Teaching Hospital]. They told me one of the side effects of treatment can affect your ability to have children. If you’re lucky, maybe your hair won’t come out. You may experience nausea and vomiting.

I looked at my family and thought who was going to take care of them if something happened to me? I'm the one who supports my family. I'm a daughter. I’m a mother. My mother is a widow. I have five siblings. They look up to me. Looking at my children, if I died today, what would happen to them? I started my treatment, but it wasn't easy. I couldn't do the activities I used to do. I couldn't go out in the fields to market my products, and in my company only two of us do that. I had to stop all that.

My business started slowing down after I started treatment. Sometimes I couldn't afford the transportation. I never wanted to be admitted to the hospital because my family needed me. Yes, I was sick, but I tried by all means to provide for them. My mother and my siblings all depend on me. So I continued with my treatment and therapy.

CC: It sounds like in your journey you've had different women along the way who supported you. Talk a little bit more about the value these women have had in your cancer journey.

LM: My friends said, “Don't be scared, you can do this.” And my mother also encouraged me even when I had difficulties. They really helped me. If it wasn't for them, I think maybe I could have given up. They stood by me, motivated me, supported me, mentally and physically.

CC: How do you feel now that you have finished your treatment?

LM: As you can see, I’m doing well, but I wasn't like this right away. I couldn’t sit the way I'm sitting for a long time. My back used to hurt. And there’s a stigma because of the smell. So now I feel comfortable again, and I can do what I used to do. I can go forward, sit with my friends again, which I could never do while I had cancer.

CC: So you talked about when you were undergoing treatment how your business went down a bit. Talk about the effects that that had, not only for you but for the other people in your company. Why was your health so important to them?

LM: My health is so important to the business in the sense that these are five employees who depend on me. I knew that if I stopped this business, these five families are going to suffer. So I needed to beat this cancer so that I could support these other families. They look up to me. I take them to be my family. I just needed to get better so that I could go back to work. I continued with my business so that my workers can benefit from what I do.

CC: So it's not just your family that depends on you. It’s five other families too. So now that you've gotten better, you've mentioned you're still building your business. How is your business? Has it improved since you have finished the treatment?

LM: Right now I'm trying to work extra hard. I'm a very hardworking young lady. My business is not the way it used to be, but I'm trying to get there.

CC: Having cancer affected your business, but by having a business, you had access to some capital I’m assuming to help with your treatments. How did being a woman who has a business affect your ability to seek treatment?

LM: I used some of the funds from my business in terms of transportation. Where I live is very far from the hospital. I also used that money to cover basic needs at home because I couldn’t work.

CC: What's your dream for the future?

LM: I'm free now of this cancer. My dream is to work with women especially and to support them in any way that I can. I want to encourage more women to go for [cervical cancer] screening. If they find that they’re okay, good for them. But if they find that they have cancer like myself, they can start treatment. They can be okay. They can beat cancer. They can because I did.

CC: What should people know about women in Zamiba and what do you need to achieve the dreams that you have?

LM: What I want is to empower women and help women find more [opportunities] for employment. I want to work closely with women and ensure that I have an organization that’s building awareness about cervical cancer and encouraging more women get screened. Women need to get empowered with information, and once I build my company back to where it was, I can also try to help more women.

Jenny Albertini: You said you learned of your diagnosis in February, but you weren't scheduled for treatments until May. I know that sometimes there's a wait because there aren’t enough machines. What was that like to have to wait for those few months?

LM: When they told me I had an appointment in May, what was I supposed to do? I couldn’t wait for that long. They said there's nothing they could do. You just have to wait. They just encouraged me to take pain medicine. When I did take the medicine, I used to feel much better. But the smell… sometimes I used to put on a diaper. I needed to change it every hour. So every day, wherever I went, I wore perfume so that I'm not affecting the people surrounding me.

JA: Is there anything else you want to share?

LM: Just a word of engagement. It’s very, very important to go for screening. If they tell you you’re fine, it's important to follow up the appointment and go back. And if you find that you have cancer, it's better that you start the treatment. You don't have to be scared. I went through a lot, yes, but look at me now. I'm free. I'm fine. So I just want to encourage someone to go for a screening. It's very important for our health.

Watch the Concordia panel discussion: Healthy People, Healthy Economies: Strategic Public Private Partnership Delivering Results.


Author

Crystal Cazier
Crystal Cazier

Crystal Cazier serves as Program Manager for the Global Health Initiative and for Evaluation and Research at the George W. Bush Institute. In this role, she helps coordinate the Bush Institute’s involvement in The Partnership to End AIDS and Cervical Cancer, a collaboration of the Bush Institute, PEPFAR, and UNAIDS that works with eight countries in sub-Saharan Africa to prioritize HIV-positive women in national cervical cancer prevention and control programs. She also serves on the research and evaluation team which supports programming across the Bush Institute.

Before joining the Bush Institute, Crystal worked as a Clinical Research Associate at Carle Cancer Center in Urbana, Illinois where she managed budgetary and contractual negotiations for both pharmaceutical and government-sponsored clinical trials. 

Crystal received her undergraduate degree from the University of Illinois in Urbana-Champaign and is currently pursuing a Master of Public Health at the University of Texas Health Science Center.

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