Vincent Luyinda gets out of the house holding an oral morphine bottle, a drug which relives cancer patients of pain. The 32-year-old, who lives with his elderly father in Misaali, a suburb of Masaka Town, has plaques or nodules and general swelling in his left palm and right foot.
He sits on a scrap battery at the veranda, and keenly looks at me, perhaps wondering why the two women I am with look familiar. The women are from Kitovu Mobile where he receives palliative care for HIV/Aids and Kaposi sarcoma, a cancer.
After a quick introduction, he says: “Let us talk under the jackfruit tree.”
He is quick to say we have found him in a better state since he started getting oral morphine.
In 2016, Luyinda developed lumps on his stomach. Before getting to know the cause, the purple lumps spread to his back.
“In a week, I developed one or two and after one got healed, another one emerged,” he says.
Months later, he says the purple coloured lumps started appearing on the arm and foot, developing uncontrollably.
The itching lumps, he says, were hard and brought him a lot of pain.
“Because I am HIV positive, I went to Uganda Cares for a refill of Anti-retro viral drugs. I reported the condition to my counsellor,” he narrates.
He was then told that he had Kaposi sarcoma, an HIV/Aids related type of cancer that forms masses in the skin, lymph nodes or other organs.
“He told me this is not witchcraft but cancer and thereafter, sent me to a doctor for definite diagnosis,” Luyinde says.
The doctors immediately referred him to Kitovu Mobile, a non-government organisation offering palliative care, where he started getting oral morphine.
He takes it every after four hours and it has indeed reduced on the intense pain he was feeling.
“I cannot say I don’t feel pain but there is a sharp contrast between the past experience and the day I started getting these drugs,” he says.
In early 2015, Luyinda, who was a builder, decided to get himself a spouse. But he says he made one grave mistake which has seen him land in this trauma. “I didn’t request her to have an HIV test before committing to her. Any brother, if you are still single, do not ever do what I did.”
Almost 11 months into the relationship, he started getting sick often, which got him to test for HIV.
But when he told his wife the need for them to have a test, “My wife was scared but later accepted and we went for a test where we both emerged positive. As opposed to my spouse, I was overly scared.”
He says his life changed and when it got worse, the spouse took off. He had been enrolled on drugs but adherence was poor.
This, according to Dr Rose Nabatanzi, the in-charge of Kitovu Mobile medical centre, is what gives room for opportunistic infections associated with the HIV to take root.
“Usually, the CD4 cell count increases when the HIV virus is controlled with effective HIV treatment. Effective treatment also leads to viral load suppression and when this is realised, opportunistic infections are kept at bay,” Dr Nabatanzi explains, adding: “This is the reason HIV-positive people need to adhere to drugs by taking them regularly and we ensure that this sinks in Kitovu Mobile clients.”
Despite fighting HIV and cancer, Luyinda bravely fights the battle. He looks frail but psychologically strong and this, he says, stems from the psycho-social support that he gets from Kitovu Mobile counsellors.
“I got to appreciate that I am not the first person to experience this neither am I the last one. The counsellors tried to see that I am emotionally supported, which breeds a ray of hope,” he explains.
Luyinda, whose father nurses him after his wife left him when his health deteriorated, says many of his family members have deserted him.
“It is because I have no value, but Kitovu Mobile has given him a lot of support. My father is elderly and also has kidney disease and poor blood pleasure,” he says.
He now banks on Kitovu Mobile social workers as his family: “Sometimes I run out of ‘the morphine at a time when don’t have a transport to go for another bottle and as you kick off worries about the pain you are destined to go through, you see a counsellor paying you a visit.”
Luyinda says the counsellors recently gave him some maize flour which has enabled him have a meal with his drugs: “I already know what poor adherence caused meso I don’t want to miss my drugs but you can’t take them without food. But at least my father can get me a cup of porridge.”
Palliative treatments such as chemotherapy, surgery, or radiation therapy are meant to fight the cancer.
While Luyinda could get chemotherapy as part of his treatment, Dr Nabatanzi says he is yet to accept it after developing a negative attitude towards it.
“He told us he learnt that chemotherapy causes a lot of pain,” the doctor says.
Luyinda says: “I heard a lot about that type of treatment and everything about it was bad. I also want to get healed but I hear it has a lot of side effects.”
According to the Uganda Cancer Institute cancer awareness book, chemotherapy targets cells that grow and divide quickly, as cancer cells do. But it can also affect some fast-growing healthy cells, thus leading to some side effect like hair loss.
About Kaposi sarcoma (KS)
Detection.Clinically, KS has varied presentations and may be seen at any stage of HIV infection, even in the presence of a normal CD4+ T cell count.
The initial lesion may be a small, raised reddish-purple nodule on the skin, a discoloration on the oral mucosa, or a swollen lymph node. Lesions often appear in sun-exposed areas, particularly the tip of the nose, and have a propensity to occur in areas of trauma.
Lesions range in size from a few millimeters to several centimeters in diameter and may be either discrete or confluent.
Diagnosis. A diagnosis of KS is based on biopsy of a suspicious lesion. In the majority of cases, Highly Active Antiretroviral Therapies will go a long way in achieving control to regress lesions.
Treatment. For patients in whom tumor persists or is compromising vital functions organs whom control of HIV duplication is not possible, a variety of options exist and include radiation, cryotherapy, and chemotherapy KS.
Where to get started
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.