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Overcoming the odds: Sylvia’s journey to Hospice Africa Uganda

04 March 2014

When Sylvia first arrived at Hospice Africa Uganda she could not read, write or speak in English. This is her truly remarkable story, written in her own words, of how she has overcome national, linguistic and financial barriers to dedicate her life to palliative care in Uganda.

It was late 2008 when my aunt fell sick. I had finished my third year studying in Congo. My home area was torn down apart by war, but my school district was safe.

My family and I agreed when I finished my nurses training that I should go to Uganda for a break and to visit my aunt.  

However, after several expensive check-ups, my aunt’s bone marrow test revealed a cancer called Multiple Myeloma. It was very sad! Indeed I cried. At first, her husband kept the results to himself!

With my little knowledge of medicine, I suspected that something serious was going on. I listed all the symptoms and signs of the disease that I had been seeing in my aunt. I sat down at the computer to search for information. It took me a long time, for I was the main carer and to some extent I wasn’t familiar with searching on computer.

Two months later, her condition worsened. The husband remained silent. If I knew how to break the bad news, I would have told my aunt myself. By that time, I had read all about Multiple Myloma.

I continued grieving alone. Every time I entered into her room my eyes were red. No one realised the cause of my sadness, but one evening my aunt asked me, “Why are your eyes red?”

I replied that I was lighting the fire.Then she replied, “liar”. She then added “Life is a journey, I am about to complete mine; my children are young, please wherever you will be, don’t forget your cousins.”

I burst into tears. I knew she was right. 

Her husband finally broke the bad news to the family when she was close to death, and then everybody in the family was angry with him. It distressed me and the rest of the family that he chose to keep silent, and I believe that has led to hatred among them. Normally the patient’s beloved ones want to see and care for their patient up to the end. It is healing for them. Once they know patient’s condition they prefer to pour out their love and effort to the patient and be near the patient. Many would have travelled from Congo to say some last words. 

One month after her death, her second to youngest girl (11 years old), who was still in P6 and used to be very close to her mother, suddenly said, “I wish you had explained my mother’s condition; I had many things to tell her”.

We all kept quiet.

Patients know their bodies better than we do. Although the husband kept the diagnostic for himself still the aunty knew everything. We should respect patient autonomy and integrity, for it is their right and it reduces the family’s expectations for recovery.

Telling the truth helps the family and patient have a realistic expectations and begin to get used to the idea that their loved one is dying.

Eventually she died peacefully on 26th December 2008, under Hospice care after experiencing all the symptoms I had read on the internet. Up to today caring for a similar case is extremely upsetting, so I always refer it to my colleagues.

Caring for my aunt, roused my love and compassion for those who are dying. I asked a nurse, Florence from Hospice, if she could take me as a volunteer. She said yes.

That was great news for me. She was a very courageous nurse. She was the main nurse who cared for my aunt up to the end. Even if we called at night, she would respond.

Such care really surprised the whole family because we were foreigners in Uganda, and there was a big language barrier. The care boosted my desire and energy to work in Hospice, and Florence advised me to write a distinct C .V. I couldn't speak English so that advice discouraged me. 

Despite my limits in writing and reading English, one Tuesday I brought my C .V to the volunteer coordinator, Ms.Catherine. She gave me the form to fill in and asked me to choose the programmes. I preferred Tuesday and Thursday, since I was still taking care of my cousins. I returned home and the following day, I was in Hospice.

What a beautiful team to work with!

There was a team leader nurse Charlotte who would make fun of me because I couldn't express myself in English, but that was not an issue for me. I was so focused on understanding the clinical skill in Palliative care.

One Thursday I sat beside an old and well-dressed beautiful woman in the case conference (a forum where you discuss patients and learn from each other). She asked me one question; I couldn’t get what she was saying. First of all, she was a foreigner, speaking with an English accent. Secondly she asked me who I was. Immediately she realized that my accent was different. She continued, “where are you from?” I replied quietly, “from Congo”.

Only later would I find out that I met Dr Anne Merriman. 

Some day later, she started looking for me at Hospice. Unfortunately she had forgotten my name and all other details. She kept looking for me as a Nigeria lady, no one was helping her, and there were many volunteers. We could meet in the compound but still I dodged her because of fear.

Surprisingly, one day we met face to face and she shouted, “Here she is”. Oh oh I got scared. But being a very wise woman, she was able to read my fear; she held my hands. Peacefully we walked into her office and she served me a cup of tea, which reduced my anxiety. Amazingly, she called the very nurse Florence who was the health service coordinator and indeed she knew me better than others. My heart beat increased and I sweated everywhere. We had a brief interview, and she took my photo. Meanwhile, I had a lot of fear because my visa had expired and my aunt’s condition took a lot of money.  However, aunt’s husband promised to pay the visa later when we had a bit settled after her loss. We separated, and she told me to let her know if I am to leave Uganda. Of course, I went back to Congo.  I had a fiancé who couldn’t wait so he got another woman. 

It was really a dilemma for me because I had to care for my aunty.  It really disturbed me psychologically when I reached Congo, and so soon I returned to Uganda and wrote to Anne.

I continued with my volunteer work. One morning her personal secretary called me to pass on Anne‘s message that she had got a sponsor for me and that I should be ready to start an initiator course for 5 weeks. As soon as I got an email from my sponsor asking me to write briefly how I came to Uganda and a history of my family and enclose my photo. 

Hospice has 3 different sites. One of the sites was lacking a nurse, so I was sent to support as a locum. Unfortunately I wasn’t qualified to work without the consent of nurses’ council (registration) and work permit because I am a foreigner. I was called back for interview and internship in National Referral Hospital( Mulago) and finally got my registration from nurses council; I scored 81%.

Soon after I become Hospice staff. I was quite happy and afterwards enrolled for long clinical diploma course, sponsored by Hospice Africa France, led by Mr.Jim Benneth.

I would like to express my sincere gratitude to Professor Anne and Jim and Florence. They made me who I am; I got a lot of opportunities that I wouldn’t otherwise have had. I can’t mention all but it has shaped my life history.

ehospice would like to congratulate Sylvia on her recent graduation and wish her all the very best in the coming years. 

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