She is in pain yet she keeps smiling. Her once bright eyes are sunken while the shape of her bones is visible as she lies on her bed. Her lips have turned red and her face wrinkled. On her right are tins of morphine and other medicines she takes daily to relieve her of pain.
Agnes Besimbire, 29, a former accountant at Cherish Uganda, a faith-based NGO, has been bedridden since July. Sometimes she screams because the pain is unbearable. She gasps for breath, pants a lot and her heartbeat can be seen from her chest.
Her husband, Julius Besimbire, 38, who is an evangelist, has been by her side since she suffered what was then considered a minor accident in February. Together with a friend and relative, they take turns to take care of her and the two toddlers.
“We keep turning her from side to side. It must be done very carefully or she gets hurt. We have to change her diapers. I am glad there are other people helping me take care of her and the children,” he says.
One evening, as the company car made rounds dropping off the workers after work, Ms Besimbire, who was in the back seat with other workmates, hit her head on the roof of the car when it hit a pothole on Garuga Road, Entebbe.
She felt a stinging pain run through her back. “That evening, I was able to walk home but that was the start of my pain. I asked my husband to give me a massage with some ointment we had at home. The next day, I was able to go to work but I went to the clinic within the organisation and the doctor gave me some painkillers,” she says.
Ms Besimbire says although she continued working, the pain did not stop, compelling her to visit other clinics for treatment. But all the clinics she visited, she would be given painkillers of different brands that only relieved her of the pain for a short time.
“I then went to Emmanuel Hospital in Entebbe with a throbbing back pain but I still received painkillers. The third time, I asked the doctor that he does an X-ray but he declined, saying it was not necessary,” she recalls.
Ms Besimbire then went to Kisubi Hospital where the doctors did an electrocardiogram (ECG) test and chest X-ray but the results were normal. An ECG test measures the electrical activity of one’s heart to show whether or not it is working normally.
The doctors at the hospital gave her more painkillers and recommended a physiotherapist for back massages. She was also subjected to red light in addition to sprays but the back pain intensified.
After two weeks of failed treatment, she went to CoRSU Hospital and was told to do a lumber spine X-ray that showed she had a dislocated disc in the spine. More investigations revealed she had a Vitamin D and Calcium deficiency, so she was put on mineral supplements for a month as she was being monitored. However, the pain did not go.
“At this point, much as the pain was in her upper back up to the neck area, her legs were shaking constantly and she felt numbness and became paralysed. She could not walk anymore,” says Mr Besimbire.
In July, the doctors at CoRSU recommended that Agnes does an MRI scan to help her identify the cause for her persistent back pain.
Cherish Uganda provided a van that would take her to hospital since she was unable to walk. They also supported her with Shs1m to help with the treatment and the scan.
“At the Mulago hospital spinal ward, several tests were done but the doctors could not get to the real cause of the problem,” he says. One of the tests, however, revealed that there was a mass that was developing in the spine and a biopsy test revealed that she had a cancer but they did not know where it had started from.
Ms Besimbire was then referred to the Uganda Cancer Institute but since the doctors had not identified the type of cancer she was suffering from, she could not receive treatment. She was given morphine to help relieve her pain.
She was then put onto radiation to stop the spread of the cancer to other parts of the body. For several days, the couple was at the cancer ward but she was not getting any treatment, so the doctors advised them to return home.
However, the couple continued running more tests. Aside from the tests at Mulago, they ran tests at LMK laboratories, Kampala Hospital at and at some point, they were also advised to get Shs1.6 million and get special tests taken to Lancent laboratories in South Africa but they could not afford the money. So they waited for results from Mulago hospital.
Last week, the results from Mulago returned, indicating that she has cancer of the spine. Mr Besimbire says his wife has started treatment at Mulago but the cost of treatment is high. Every day, he hires an ambulance at a cost of Shs150,000 to take her to hospital and back home.
“She has lost a lot of weight because she does not eat well. She vomits when we bring her food. She uses a catheter, needs pampers and pads. She developed bed sores because she cannot move,” he says.
Since she is unable to move, Mr Besimbire says she usually gets a burning sensation in the legs so she needs a cold compress to soothe her.
“Her feet also swell because of blood clots. She gets blood thinners through an injection that costs Shs50,000 to reduce the clotting after every seven days. We also try to massage the feet to help the circulation of blood in the feet,” he says.
The couple has been married since 2013 and has two children. Mr Besimbire is an evangelist at Makerere Full Gospel Church whose members have given them great support. One of the members offered them a room in Muyenga, a city suburb, which is closer to Mulago hospital than their rented home in Garuga, Entebbe.
“The older boy asks why the mother stays in bed all the time. The youngest boy was breastfeeding by the time Agnes got sick and he made a year while we were in hospital,” he says. The couple appeals to any Good Samaritan to assist on medical bills. “I wish there is someone that can help me regain my health. I need my spine fixed so I can walk again but we are completely drained [financially]. I need to take care of my children because they are very young,” Mr Besimbire says.
Where to get tested FOR CANCER
UMC Victoria Hospital: Free breast cancer screening at the hospital and UMC Entebbe clinic, free specialist/ doctor consultation and discount on extra investigations such as ultra-sound /biopsy if required.
Nakasero Hospital: Breast cancer awareness presentation twice every week for October, free clinical breast examination following the presentation, free mammography services following the breast exam for those that require it and all the above will require booking to ensure good planning for each day.
AAR: All AAR clinics (Makerere Health Centre, Bweyogerere Health Centre, Bweyogerere Health Centre – annex, Kabalagala Health Centre, Bugolobi Health Centre, City Health Centre, Entebbe clinic, Ntinda Health Centre, Acacia Health Centre, Mukono Health Centre, Natete Health Centre and Gulu Health Centre) will provide free breast cancer examination and V/A screening at a subsidised price of Shs10,000.
About spinal cancer. A spinal tumour is a growth that develops within your spinal canal or within the bones of your spine. A spinal cord tumour begins within the spinal cord or the covering of the spinal cord.
Symptoms: Back pain is the most common symptom of spinal tumours. Pain may also spread beyond your back to your hips, legs, feet or arms and may worsen over time — even with treatment. Spinal tumours can compress spinal nerves, leading to a loss of movement or sensation below the location of the tumour. This can sometimes cause changes in bowel and bladder function. Nerve damage may be permanent.