While in the quest to advocate for legal aspects in palliative care, Kenya Hospices and Palliative care advocacy officer, Mr Musyoki and Santana, a volunteer, who joined the association recently, accompanied the Coast Hospice team in recording a documentary featuring improved quality of life to the patients and families the hospice serves. The visit to the coastal region in Kenya was rather inspiring particularly hearing and appreciating the work the Coast hospice was doing. During the last day there, the program manager, Mr Eric Onyango, and the social worker of the hospice led us into one of the slums in Mombasa to visit a regular patient of theirs by the name Amina (Not her real name). We made our way into the small but nonetheless cozy home and quickly introduced ourselves to Amina, who flashed her captivating smile and welcomed us.
The nostalgic or what can inevitably be interpreted as the simple times of Amina’s life is quite poignant. Amina and her sisters lost their mother in the year 2000 after which she decided to work as a house help. It is during that time while working that she started getting ill. She described how someone in her life had offered to buy her medication, but did not wholly fulfill that duty which she attributes as a major catalyst in her not healing as quickly as she would have. She later went to the hospital, was diagnosed with cancer, had a treatment plan drawn, which included a referral to Kenyatta National Hospital for radiotherapy and other medication and subsequently made her way to the Coast hospice.
The radiation however gave her side effects which are still quite visible glancing at Amina. Even as we walked in, Amina’s swollen legs were rather perceptible. The Coast Hospice has since been providing her with the pain medication that helps her sleep at night when her legs ache. After going back to the hospital, she was told that she would then need chemotherapy which is greatly expensive. She remembers how she lost what she attributed to be her support system at that time due to the trips she had to make to Nairobi every two weeks for the treatment.
However, she also vividly remembers the open arms that welcomed her and the hospice community she found when she eventually visited. As one can make up, such uncertainty on whether one will get the funds for treatment can in actuality make one feel out of control and inevitably powerless. Amina appreciates her donors, hospice, spirituality and music which are major factors of her life and hope restoration mechanisms. The hospice has given her medication, some funds for travel, the community aspect, extensive psychosocial support and legal advice which has since empowered her. That legal advice she says, makes her not afraid; she is not afraid of mediocre threats because she now knows her rights and proudly voices them when needed. As Amina had stated “Some people have tried to make threats concerning the land I’m currently residing on, but I tell them I have a lawyer and that aspect alone makes them re-think their intimidation”. Her music is her way of voicing her problems, her voice in beating cancer or better yet her fight song.
As we left Amina’s house with vast empathy, a greater appreciation for the benefits of palliative care was put in perspective. The hospice together with the Kenya Hospice and palliative care association (KEHPCA) supports patients as they continue to take back their lives and with the unrelenting support of the community, it is attainable.