Palliative care soothing Luyinda from the double trauma of HIV/Aids and Cancer

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Luyinda being prayed for by a team from Kitovu Mobile

Luyinda being prayed for by a team from Kitovu Mobile

Sorrow, tears and psychological pain can swallow you up   when you look at   Vincent Luyinda.

The 32 year- old man   is a resident of Misaali, a Masaka Town suburb in Masaka District. He is facing a double jeopardy of braving HIV/Aids and cancer, both dreaded ailments.

Luyinda’s left hand and right foot have plaques/nodules and general swelling which brings him a lot of unbearable pain and his pale face visibly tells it all.

With a bottle of oral morphine solution in his left hand, Luyinda sits at the veranda of his father’s house who is currently taking care of him. Oral morphine is a drug which relieves cancer patients of the intense pain which escorts cancer.

But despite all this distress, Luyinda  looks a bit strong considering what he is going through.

When you ask him about the secret , he is quick to point at the bottle  he is holding.  “ My oral morphine is the reason. At least when I take it, it takes  away pain which I used to suffer before I was enrolled as Kitovu Mobile HIV client”

He says Kitovu Mobile gives him  drugs which are supplemented with pyscho -social support which has nursed his early negative mind about his life . “I got to appreciate that I’m not the first person to experience this neither I’m I the last one. The counselors tried to see that I’m emotionally supported which brings  hope”he says

Luyinda says his  wife abandoned him when his health deteriorated  yet she is  the one who contracted him with HIV/Aids . Since then,  many of his family members have deserted him too.

“They  think I have no value, but Kitovu Mobile has given me a lot of support .My father ,like you have seen him, he is aged and is also disturbed by kidney disease and blood pleasure,” he says.

Vicent Luyinda,shows me his oral morhine drugs which relives him of the pain. Photo by Moses Muwulya.

Vicent Luyinda,shows me his oral morhine drugs which relives him of the pain. Photo by Moses Muwulya.

Luyinda  entirely relies on social workers from Kitovu Mobile as his family. “Sometimes I run out of ‘my oral morphine’ and I  don’t have money for  transport to go and get  another  bottle, but counselors usually  pay me a visit and relieve me the pain ”

He says,counselors  recently gave  him some maize flour which has seen him take drugs and food “ I already know that  poor adherence to drugs is dangerous  , but you can’t take them without food .I am grateful to  my father who prepares  porridge for me ”

How he developed the disease

In 2016, Luyinda developed lamps on his stomach. Before getting to know the cause, the purple lamps spread on the back “In just a week, I could develop one or two and after one gets healed, another one could emerge,”

Months later, he says the purple coloured lamps shifted and concentrated on the arm and foot and started developing un-controllably.

The itching lamps, Luyinda says were hard and brought him a lot of pain. “Because I’m HIV positive, I went to Uganda Cares for refill of antiretroviral drugs. I reported the condition to my counselor”

He was then told that he had Kaposi sarcoma, one of the HIV/Aids related types of cancer that from masses in the skin, lymph nodes or other organs.

“He[the counselor ] told me this is not witchcraft ,but cancer and sent me to a doctor for definite diagnosis,”Luyinda says

The doctors, he says  immediately referred  him  to Kitovu Mobile, a non-government organization offering palliative care ,where he started getting oral morphine to get relived of the pain.

He takes oral morphine every after four hours and it has indeed relieved him the  intense pain that comes with cancer.

“I cannot say I don’t feel pain, but there is a sharp contrast between the past  and current experience ,the day I started getting this drug’

Getting HIV

Luyinda's swelled hand with plaques and nodules which developed after lamps concetrating in his palm.PHOTO BY MOSES MUWULYA.

Luyinda’s swelled hand with plaques and nodules which developed after lamps concetrating in his palm.PHOTO BY MOSES MUWULYA.

In early 2015, Luyinda whose livelihood depended on constructing houses, decided to get himself a spouse which wasn’t wrong.

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. This message goes to  the youth , if you’re still single, don’t ever do what I did”

Barely after 11 months, Luyinda started getting sick with recurrent malaria which aroused vigilance to go and test for HIV/Aids .

But when he told his wife the need for them to have a test, she felt so scared .

“My wife felt scared , but  later accepted and we went for an HIV/Aids  test where we both emerged positive. As opposed to my spouse, I was overly scared” he says

Luyinda says his life changed and when it got worse, the wife abandoned him . He had been enrolled on drugs,but adherence was poor.

This, according to Dr Rose Nabatanzi, the officer in charge of  Kitovu Mobile Medical Centre  is what gave room to  opportunistic infections associated with the HIV/Aids .

“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  realized, opportunistic infections are kept at bay”she says

She says, this is the reason why HIV positive people need to adhere to drugs by taking them regularly and timely. “And we ensure that this is taken seriously by all our clients”

Rejecting treatment

For patients in whom tumor persists or is compromising vital functions of body organs or in whom control of HIV replication is not possible ,a variety of options exist to eliminate cancer . These include;  chemotherapy ,cryotherapy and radiation therapy.

But Dr Nabatanzi says ,Luyinda could get chemotherapy treatment as part of palliative treatment ,but he rejected it after developing a negative attitude towards this type of cancer treatment where drugs are used to kill cancer cells. “He[Luyinda] told us  that he learnt that chemotherapy causes a lot of pain,but we are still trying to convince him ”

Luyinda says: “I was told many   negative things about that type of treatment [chemotherapy] and everything about it was bad. I also want to get healed, but I hear it has a lot of side effects”

According to a cancer awareness book prepared by   Uganda Cancer Institute and American Cancer  Society  , 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 effects like hair loss and vomiting .