Patient stories from the volunteers – Rita

Toko Friday, a lead volunteer at the Makerere Palliative Care Unit, writes about a patient that the volunteers provided support to earlier this year.

Rita (not her real name) was a 49 yr old refugee from Congo diagnosed with breast cancer which had spread to her lungs. She was married with two children, 24 and 15 years. After spending several weeks on the surgical ward in Mulago Hospital she was referred to the palliative care team by the surgical doctors for pain and symptom control. Being a member of the multidisciplinary team (MDT) as volunteers, we visited her and her husband who is her main carer. Though we had challenges with communicating with them because of language issues, we managed to establish a good rapport with the help of another carer who was able to interpret. We became very good friends and she shared a lot of information regarding her fears and concerns about her illness. She was worried about getting treatment and a cure for disease and feared she may end up dying on the ward and never to see her children again.

“I don’t have money, I can’t even afford investigations. I want a cure; I want to go back to Congo and see my house and children”.

Rita with her husband and a volunteer from the Makerere Palliative Care Unit

Rita with her husband and a volunteer from the Makerere Palliative Care Unit

Her main distress was overwhelming pain and inability to walk and difficulty in breathing – she was bed bound and could not even turn in bed. The team prescribed oral morphine for her, which the volunteers helped to get from the pharmacy and also educated her husband on how to give morphine, explaining that this will reduce her pain and improve her breathlessness. She was encouraged to adopt a sitting position and other breathing techniques to make her as comfortable as possible. Practically the volunteers were able to pick her drugs from the pharmacy and also help in translating the English language to the patient and family since they could only communicate in French and Swahili. We were able to liaise with Inter Aid an organization that supports refugees who helped with providing food and upkeep to enable the stay on the ward. After a few weeks later her symptoms were managed, a biopsy was done and referred to the Cancer Institute. Unfortunately, more investigations were needed before treatment could start but she was unable to continue due to financial constraints.

As volunteers, we continued visiting her on the ward, spending time with her and her husband and at times praying with them. They were very grateful to us and the palliative care team, saying “you are angels from God, we are refugees, but God has sent you to visit us and comfort us, please come always”. We continued to liaise with the social work team, but it was difficult to raise funds for her investigations. This was quite distressing for the patient, carer and us as volunteers. She was then discharged back to the Refugee camp and as she was leaving she said she was very grateful to us for the love, care and support given to them as strangers and wished God’s blessings. “At least let me go and see my children before I die” said Rita as she left the ward. Her husband called to inform us of her death two weeks later. May her soul rest in peace.

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