Caroline Akello, felt a lump in her left breast which was causing an inward retraction beneath the breast in June 2018. She shared her fear with a friend who was working at Naguru Hospital and carried out a scan but it was not clear.
The doctor friend told her that it was not serious so she only had to go for a review after three months. She then relaxed.
When her older sister visited her a month later, she showed it (lump) to her and she recommended that she seek medical attention.
“I did not take it seriously because I did not feel sick but my sister booked for me an appointment with a doctor at Bugolobi Medical Centre. The doctors recommended a fine needle aspiration because the breast looked highly suspicious for cancer,” the 35-year-old says.
She also undertook a mammogram and was then referred to Mulago Hospital to a breast specialist who recommended that the breast be removed.
“I had to start the cancer treatment immediately but I was not comfortable losing my breast so I consulted a nutritionist who told me about the foods that I had to stop eating for the cancer to heal. Several people had recommended some herbs to my sister in the village so I also used them,” she recalls.
Besides losing the breast, she also feared the exorbitant costs that would come with treatment (about Shs4m for the start) in a private hospital.
A friend then introduced her to Ben Ikara of Uganda Child Cancer Foundation, who connected her to the Fred Hutchinson Cancer Research Centre. It is at the centre that she was able to have a biopsy and other tests and thereafter started treatment.
Stage IIIB cancer
“I did not pay for the biopsy and blood work because the researchers were conducting a study. I only paid Shs110,000 for the heart test, ultrasound and chest x-ray and then the blood count and organ function test were free.”
The biopsy confirmed stage IIIB cancer.
Akello’s response to her diagnosis was at first disbelief but later she calmed down knowing that anyone can become sick any time after sharing with some of the survivors at Uganda Women Cancer Support Organization (UWOCASO).
She then started her chemotherapy on January 2, 2019 and while on the treatment, she volunteered at the Uganda Child Cancer Foundation as a play therapist and social mobiliser for the children. This helped her keep engaged throughout her treatment process.
“I was on chemotherapy for six months. On the first cycle, I lost some hair but three days after the second cycle, my hair fell off like a basket so I had to wear a wig while I worked with the children. Volunteering made me feel useful to society.”
Help from all corners
She says her workmates really helped her a lot during the treatment process. She remembers a time when a workmate brought her a new wig. The Uganda Cancer Institute, the Uganda Child Cancer Foundation became like her second home.
Three weeks after completing her chemotherapy, she was being prepared to go for surgery.
“I thought the tumour had shrunk and there was no need to remove my breast. I was still hesitant about this but the women from UWOCASO convinced me that it was for my own good. Luckily, I did not need transfusion until the time of the surgery and since I am a Jehovah Witness, I notified my surgeon early enough that he should not transfuse me,” she recalls.
The surgery went on successfully. She healed within a month and then needed to start radiotherapy in October 2019. She was supposed to be on radiation for only a month but because the radiotherapy machine frequently broke down, it dragged until December.
She, after chemotherapy, took tamoxifen, a hormonal therapy for a year.
In December 2019, she developed back pain that was on and off.
“I thought it was one of the aftereffects of radiotherapy since I had also developed a wound on the chest. I went for physiotherapy but in May 2020, the back pain intensified. I could not walk. After a CT scan and more tests, the doctors said I had another cancer in my spine which had eaten up one of the bones of the lower back connecting to the spine. It could have been there while I was on breast cancer treatment but we did not notice. It is a separate cancer, not spreading from breast cancer,” she says.
Akello immediately got radiation treatment for 10 days but thereafter developed ulcers because of radiation.
She has been on oral and intravenous chemotherapy for the cancer of the bones which she takes monthly for 10 months now. For all the time she has been receiving treatment, she always wentalone except on the day of the surgery.
Her ever-present caregiver is her 17-year-old daughter.
During the lockdown, she would walk from Kikoni to the cancer institute.
“Being in Kampala was an advantage because even when the boda-bodas were not allowed to carry passengers, I would walk to the hospital.”
Doctors say her back is very delicate and is never going to be the same again because she cannot carry anything heavier than two kilogrammes, cannot squat, nor exercise for fear of straining the back and must wear a corset to support it.
Despite all this, Akello is a fighter who is not willing to give up.
She has also volunteered to be a patient navigator at the UI for UWOCASO.
From her experience, she thinks all cancer patients need someone to encourage them and give them the will to fight on.
“Many patients usually want to speak to someone who has been through the journey. I am grateful for what was done for me. I need to help other people because the journey to treatment cannot be taken alone.
Along the way, some of your relatives will not understand why you have to take treatment for such a long time. I have been on treatment for three years now and some relatives would actually think you are acting out and want to get money from them. When you have a navigator, you can always talk to them and they understand what you are going through,” she says.