Gertrude Nakigudde, Uganda

Letter from Uganda

Cancer support comes to Uganda

By Gertrude Nakigudde as told to Sue Rochman

Last October, one of the newspapers wrote an article about my experience with breast cancer. That was the first time anything like that happened in Uganda. The article mentioned where I worked, and people would come to my office and say, “You are the one who had breast cancer. I read about your story. I have cancer too.” They would all come to me, even men, because I was the only one talking about cancer.

Because I was so young when my cancer was diagnosed, I thought it was genetic. Even so, it was startling when my father was diagnosed with breast cancer in February 2006. He told me he had itching in his nipple, and because I am an advocate, I looked for information about what he was experiencing. I took him to my surgeon, who told us it was breast cancer. He had surgery and is now in the middle of chemotherapy treatments.

Being the first support group is not easy. Our group has benefited greatly from an alliance between doctors at the University of California, San Francisco, and in Uganda. Because of the alliance, I was able to attend the annual ScientistSurvivor program, hosted by the American Association for Cancer Research. At the meeting, I learned from other advocates how to fight for cancer patients’ rights, and when I returned home, I arranged to meet with government officials. They said they had never thought about the concerns I raised, and they appointed me to a board in our main referral hospital, so that I can raise awareness about cancer and the problems people with cancer face.

I am evidence that life continues after cancer. When I was first diagnosed, doctors told me that because of the chemotherapy I would never have a child. It was heartbreaking. So I was incredibly surprised and happy when I found out I was pregnant two years after my treatment. My little boy was born on April 8, 2005.

When I think back to all I didn’t know when I was first diagnosed, I realize how important it is that I change this situation for others. I hope that at some point I can do advocacy work full time. I feel that this is my calling. When I talk to people or accompany them to the doctor’s office, I know that this is the work I am meant to be doing.


Gertrude's Story:

Seeing her five-year-old son, John Paul, run around her home makes Gertrude Nakigudde smile. Nakigudde, a 38-year-old breast cancer survivor clearly remembers the doctor’s words during her chemotherapy treatment: “I am afraid you may not be able to conceive because of the side effects of chemotherapy.”

Nakigudde believed the doctor’s words since other people had told her how chemotherapy makes women infertile. Just like the doctor predicted, chemotherapy made Nakigudde’s periods irregular, stretching her menstrual cycle to 40 days. And when Nakigudde conceived two years after her treatment, it was only after three months that she decided to do a pregnancy test. The results were positive.

“It was a surprise,” says Nakigudde. She had mixed feelings. “Though I was happy about it, I was worried, wondering whether I had made the right decision since the doctor had urged me to wait for about three years before I could conceive, to enable the body clear of the chemotherapy toxins.”

She broke the news to her doctor who was thrilled, and attached her to a gynaecologist. Nakigudde says she enjoyed every moment of her pregnancy. “I carried my pregnancy to term with no complication, I had a huge appetite, good sleep and worked until the day before I was admitted.”

However, Nakigudde did not get a chance to experience a normal delivery. She did not get contractions even after attempting an induction. Left with no option, the doctors decided to give her Caesarean section to save the baby.

I carried my pregnancy to term with no complication, I had a huge appetite, good sleep and worked until the day before I was admitted.

- Gertrude Nakigudde

Having had a previous masectomy on one breast did not stop Nakigudde from breastfeeding John Paul. “I had a lot of breast milk and I was able to breastfeed exclusively for six months. I would even express the milk and leave it behind for John Paul while I went to work,” says Nakigudde.

After delivery, Nakigudde kept in touch with her doctors. She regularly goes for routine check-up at the cancer clinic. In addition, she checks her lymph nodes often and does a self-breast exam to check for lumps in the remaining breast.

Her history
Nakigudde’s battle with breast cancer started in July 2001 with a small lump in her right breast. She felt the lump accidentally as she lay on her bed.

After she confided in a friend, she was advised to ignore it since it was not painful. Eight months later, Nakigudde noticed that the lump had grown bigger but did not think much of it.

One day while she sat at her office desk, she felt a sharp pain cut through her breast but did not relate it to breast cancer. After a week, Nakigudde went to Mulago Hospital and was referred to a surgeon, but went to Case Clinic since she had medical insurance. She had minor surgery to remove the lump. In the mean time the doctor also retained a biopsy to help do further cancer investigations.

A week later, when Nakigudde returned to the clinic to have her wound dressed, the doctor revealed to her that she had aggressive breast cancer.

Though heart broken, Nakigudde was determined to fight for her life. She went to Mulago Hospital and had a masectomy.

A month later, Nakigudde was referred to the Cancer Institute, Mulago for chemotherapy. A lot of tests that included the heart, lungs, liver and womb were done before administering chemotherapy. Though the tests turned out negative, the doctors insisted that Nakigudde take a six-cycle of chemotherapy since the cancer was aggressive. The chemotherapy lasted six months and was spaced in three-month intervals.

“Chemotherapy is such a nightmare, I would feel tired even first thing in the morning, and I would vomit whenever it was administered. I lost my hair and even turned dark,” narrates Nakigudde.

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