Archive for the ‘Voluteer stories’ Category

Juliet’s story

Monday, December 23rd, 2019

As told by Vicky (a volunteer with the Palliative Care Education and Research Centre)

Juliet (not real name) is a 52yr old, diagnosed with Cancer of the cervix, sick for the last 7 years and admitted to the Uganda Cancer Institute.  

She is under the care of the Palliative Care team working alongside her primary doctors, with the volunteers supporting her through her pain and symptom control. The volunteers were able to visit her and establish a good rapport with the main caregiver, Juliet’s sister. Juliet had advanced disease and her kidneys were failing and thus getting weaker every day. The doctors requested a procedure that would help to revise her kidney problem, but it was too expensive and the family could not afford it due to financial constraints. This was very distressing to the daughter and sister, watching their loved one in agony and in a confused state. It seemed really a hopeless situation for them.

However, the volunteers were able to liaise with the Social Worker of the Uganda Cancer Institute to raise some funds for the procedure and this was able to bring hope and a smile to the caregivers who would always cry because of not being able to meet the financial obligations.

Through the regular visits by the volunteers, the caregivers were able to share their worries and fears, which included not being able to transport their loved one’s body if she died in the hospital. This was a very painful feeling but as volunteers we informed the clinical team who then facilitated the patient discharge and also referred them to a community Palliative Care centre for continuity of care.

Volunteers bringing hope through offering psychosocial and spiritual support to a patient and carer on the ward.
Volunteers bringing hope through offering psychosocial and spiritual support to a patient and carer on the ward.

The family appreciated the time, help, care and love they were shown at their darkest moment and they had this to say “Thank you for loving us and visiting us. You did not know us and we did not know you but this has created a relationship between us which I would not want to end! You should extend the love to the rest of the other patients too”.  

She died a few days after she was discharged back home but the family was very grateful and have remained in touch.

So being a volunteer in palliative care is both a positive and meaningful experience and it is a privilege being able to help those in need.

As a volunteer, it is important to be present for the vulnerable persons and to follow them in their various physical and spiritual distresses. However, it is crucial to possess knowledge, skills and life experience, as well as a clear role, with regular support from my mentor.

As long as what I am doing is help to the patients and families, I am happy with what I do. It does not matter what it is, as long as I am of assistance, I am happy

Vicky Kirabo (Palliative Care Education and Research Centre volunteer) 

Patient stories from the volunteers – Rita

Sunday, October 7th, 2018

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.

Stories from MPCU: Immaculate’s story

Saturday, January 14th, 2017

Making a Difference……….

In June this year, one of our Nurses went to the south western part of Uganda to carry out mentorship. While there she coincidentally met a patient in one of the hospitals who had been diagnosed with HIV/AIDS and a cancer called Kaposi’s Sarcoma in her mouth. Immaculate, a 22 year old young lady, was receiving treatment for the AIDS Virus, but there wasn’t treatment for her cancer. Nurse Florence organized for her to be transported to Kampala to the Uganda Cancer Institute where she could get chemotherapy for the cancer.

Immaculate, a 22 year old woman, was diagnosed with Kaposi's Sarcoma in her mouth

Immaculate, a 22 year old woman, was diagnosed with Kaposi’s Sarcoma in her mouth

Resources were mobilized and she was brought to the Uganda Cancer Institute, where she was worked up for chemotherapy. However she had travelled alone to the hospital, which was quite difficult since patients need a family member to provide care and support. The MPCU volunteers helped her settle in, got accommodation for her, made sure her meals were provided and escorted her for her treatment appointments.

Immaculate received treatment at the Uganda Cancer Institute

Immaculate received treatment at the Uganda Cancer Institute.

It was quite challenging for her being alone far away from home, with a language barrier and also dealing with the side effects of chemotherapy. However the volunteers have been a family to her, visiting and making sure she is as comfortable as possible.

After a two month stay, Immaculate was discharged from hospital with immediate signs of improvement.

After a two month stay, Immaculate was discharged from hospital with immediate signs of improvement.

After a two month stay in the hospital, Immaculate was discharged to go home, and the signs of improvement were already clearly visible. ͞She says, “Indeed you people are angels sent by God because you didn’t know me but you took good care of me as if I was part of your family. If it wasn’t for you, I wouldn’t have managed to go through the treatment, and I wouldn’t have come into the hospital. I want to go back home and continue with my work in the garden. Help other patients also.”

By Ivan Onapito (Volunteer and Pastoral Support Coordinator, MPCU)

Stories from MPCU: Bob’s story

Saturday, January 14th, 2017

“…In all Things, give thanks…”

Bob is 19 and has had a lot of hardships in his young life. He lost his father when he was about five and his mother has struggled to raise him and his siblings. He currently has a melanoma of the eye and had just been referred to the palliative care team.

Bob, 19, is being treated for melanoma of the eye

Bob, 19, is being treated for melanoma of the eye

The Makerere Palliative Care Unit (MPCU) volunteers visited him one afternoon and they were able to take some pictures with him. The next day when I went in, he had a big smile on his face, asking me “where are my friends?”, meaning the volunteers, who had spent the previous afternoon with him. He also asked for copies of the photos.

Bob meeting the MPCU volunteers

Bob meeting the MPCU volunteers

One of his biggest frustrations is the slow process with regard to his treatment. “I don’t know what is happening, the doctors are not telling me much and I have not yet got treatment”. On Monday we went to see him together with the medical team who were discussing his management plan with the team on the ward. However he looked very sad and wasn’t in the mood to talk. I gave him the printed pictures and he smiled momentarily on seeing them, but I sensed the sadness. I promised I would see him after the clinical rounds later in the day.

He was sad that the sickness has confined him to hospital and he is not able to go to school. Since he lost his father, going to school has been a struggle and sometimes he has to do manual jobs to raise the money for his fees.

“I have struggled; even working as a porter so that I can go to school, but now this disease has put me down.”

This year he should have been sitting his final exams which would allow him to go to University and fulfil his ambitions of becoming an accountant so that he can take care of his mother and siblings. But he had to drop out of school last year when he became sick. Still he hasn’t given up hope of going back to school, and he hopes he can receive his treatment as soon as possible and get a discharge to go home.

What gives this bright young man hope and strength amidst the sickness, pain and frustration he is going through? Bob has a big blue bible by the side of his bed, which he reads a lot. Recently when one of the volunteers was spending time with him he opened a scripture in 1st Thessalonians. “Pray continually, give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”

Bob with one of the volunteers

Bob with one of the volunteers

Sometimes he gets frustrated when things don’t seem to be moving with regard to his management and treatment but he always finds comfort in reading his bible. He sleeps by the window so he has a good view of the roadside. “When I get bored, I look out the window at the cars moving on the road until you people (volunteers) come.” He appreciates the visits, love and care from the palliative care team.

This is a young man who is in pain sometimes with a dangerous disease but can still afford to smile and hope…………

Ivan Onapito (Volunteer and Pastoral Support Coordinator, MPCU)

Volunteers share their approach

Wednesday, January 27th, 2016

Volunteers at Makerere Palliative Care Unit were accepted to present their poster at a palliative care conference to show their unique strategy and approach to fit the local situation in Uganda.

Poster showing the strategy and approach of the MPCU volunteer team.

Poster showing the strategy and approach of the MPCU volunteer team.

You can also view the Volunteer Motivation Poster as a PDF.