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The lady in pink: the tale of a 28-year breast cancer survivor

On a sunny bright Thursday morning I met a strange lady; she lives in a pink house, wears pink clothes, has pink nail polish, wears a pink hat with pink accessories. Basically, everything about her is pink, and trust me this is not some fairytale; it is a real story of a woman I labelled the lady in pink.

Born in Rwanda but raised abroad, Phillipa Kigubu-Decuir is a breast cancer survivor for 28 years now. Her Journey is one that is inspiring.

It all started with her Sister, who lived in Lubumbashi, a city south-West of the Democratic Republic of Congo in Africa. Kigubu-Decuir lived in the United States at the time.

Her sister got breast cancer; she quickly got very ill and bedridden. She was then airlifted from Lubumbashi to London for treatment, but, by the time she got there, it was already too late. The cancer had metastasized to her liver and, sadly, she lost her life, leaving a husband and two kids.

Phillipa Kigubu-Decuir was left with the task to bring her back home. In such a tense and traumatic time, she flew to London to take her late sister back home, and it was no easy task.

With a hint of anguish in her voice, she reflected, “It was a very traumatic experience, especially during the flight. Her body was in the cargo bay, and I was in the passenger seat; thinking about that can make your mind go crazy.”

Phillipa took her sister home but was left with the pain of her death and the toll it took on her. She flew back to the United States where she started to get involved in activities that raise breast cancer awareness.
“When I went back to the United States, everybody was talking about breast cancer. It was a time of peak awareness. I got very much involved, especially having suffered from the trauma triggered by my sister’s death, fear and ignorance. I was deeply involved in awareness” she said

She started learning about breast cancer and became more proactive about it. She routinely did breast self examination and screening (clinical breast exam) and she later discovered what would become her fate.
“In 1994, I got my own diagnosis. I was advocating for myself. I was telling myself that I have to make sure that I do a self exam and also go to the doctor if I feel like something is wrong,” she said.

“I went to my doctor and I told him that something was wrong. It was just intuition, and that is what I tell women here in Rwanda; ‘you know your body better than anyone else. You have an instinct. When that instinct tells you something is wrong with a certain part of your body, you should run to the doctor and say, ‘hey, this and this is happening; can you help me find out what it is?”

Phillipa was diagnosed with an early stage breast cancer, which perplexed her since she was living her life in awareness. She was exercising and living a healthy lifestyle; she did not expect any illness of the sort.
“It shows that breast cancer is unpredictable. Although, there are some known risk factors, nobody really knows what causes breast cancer because, if they knew, they would have found the cure,” she said in her opinion.

This long-time activist found herself in perplexing times since this was going on at the same time as the Genocide against the Tutsi in 1994 was wreaking havoc.

“I got sick in 1994 when Rwanda was going through Genocide and, as I sat there in my chair, watching the tragic images and not being able to move—it made me wonder, “if they can go through horror, maybe I can deal with my pain too’.”

Unlike her sister, she had the services she needed and the treatment, with all the support she could possibly need.

“I went through chemotherapy, surgery—you name it, except radiation. At the end of it, I got a new name, NED, ‘No evidence of Disease.’ Now I am a 28-year breast cancer survivor, and I thank God,” Phillipa proudly remarked.

She said she found her new title more important than any Master’s degree and PhDs because it is about life. Her Journey did not end there. After getting well, she decided to educate women around her sphere of influence in the United States; but she also wanted to support others coming from Africa.

“I did a small study with Susan G. Komen, the biggest breast cancer organization in the United States. I received a small grant and started working with refugees—some were from Rwanda, Congo, Ethiopia different African Women,” she said.

“And I was like, you know what, maybe I can also do this in Rwanda, and I did! And I discovered they did not know anything,” she added

In 2007 she came to Rwanda and was, according to her, shocked because of the stigma around breast cancer. At the time, she remakrs, nobody actually dared to utter the word breast cancer; they would all say “Ni indwara y’abazungu.”

She met 27 women through another survivor, and all those women had gone through Mastectomy, a surgical operation where they had their breasts removed.

With pain in her voice, Phillipa recalled one story that she will never forget, one of the 27 women had suffered a malpractice. The doctor had made a mistake and removed the healthy breast and left the sick one.
“I took her aside and told her she had to get it done.”
But the woman would not listen. She told Phillipa she would not, she said “nzapfa n’akabere kanjye” meaning she can’t die as a woman without breasts.

That is when Phillipa Kibugu-Decuir decided she had to come back to Rwanda because her perception of the depth of myths and misinformation in Rwanda was astonishing.
People would say “When you search for something you find it; there are so many myths about it, and we have to debunk all that.”

“I went back to the US and registered (Breast Cancer Initiative East Africa) BCIEA in the US in 2008. I came back in 2009 and registered it as an NGO in Rwanda,” she said.

Even though she did not speak fluent Kinyarwanda, they listened to her, and she would always tell these women, including young women that breast cancer is everybody’s business.

She advocated for these women to love themselves and get checked. She came up with a slogan for her organization ‘Ikunde, Imenye, Isuzumishe,’ which translated to ‘love yourself, know yourself and get checked’.

“It is very important for you to love yourself; when you do not love yourself, you do not take care of yourself, and nobody knows you better than yourself.” she added.

Phillipa said that most of them would tell her they had never stopped thinking about loving themselves.
“I would show them how to do the breast exam; we translated educational materials in Kinyarwanda.”
This fervent activist told me that she fears young women in Rwanda are still not aware of what to do and how to do it as far as breast cancer is concerned.

“Rwanda is in a precarious time. There is so much information and the use of technology. I think more young women now have been exposed to breast cancer than the previous one but whether they are applying or know how to apply the information they consume—I do not know.”

She said that young women and men should start applying the knowledge they can easily access.
“Boys can get breast cancer too. You have to understand everything just to know what you can do when that happens. Knowledge is power.”

She said that she wishes breast cancer be given focus just like other diseases, such as HIV/AIDS, since it is a disease that can affect a whole family.
“It affects the mothers, grandmothers, daughters, nieces and others. It affects the whole spectrum of unity.”
She says that for a young woman to go through is no easy thing since it can affect her body image.
“There is this emotional part when it comes to the sexuality of young girls. It impacts their body image, but again, it is all about self-esteem and self love. You have to know you are enough whether you have one breast or two, one leg or two, there is more to you than just part of your body.”

She emphasized that once you are diagnosed you have to keep up the fight and resist the fear.
“First of all, one of the things we have to fight is fear; fear comes from lack of knowledge. You have to know that you can survive. You have to listen to what your doctors tell you and follow the clinical guidelines”

“Be open about your disease. Research—you have many options. You have to know that part of your [survival] depends on the lifestyle you are living. You have to know that you are not alone” remarks Phillipa.

The pink lady says that she acknowledges it is a hard thing to deal with and that a person can ask themselves why it is happening to them, but that it is something unpredictable that you have to go through with a tough armor.

Phillipa Kigubu-Decuir or, as I called her, the lady in pink, doesn’t wear the pink just for show or just because it is a color that is associated with breast cancer. She wears pink to emphasize her beliefs and to emphasize the purpose of her activism.

“Breast cancer is everybody’s business. Break the silence [about it],” says Phillipa.

Phillipa Kibugu-Decuir ‘the pink lady’ believes that preventive health is better than curative health

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