Archive for the ‘Voluteer stories’ Category

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.

Byarufu and Vivian tell their treatment stories

Wednesday, October 28th, 2015
Volunteers with the Makerere Palliative Care Unit, supported by Uganda Cancer Trust UK, have been providing invaluable support to cancer patients. Here Byarufu and Vivian tell us their stories about how the volunteers have helped them.

Byarufu

40 Year old Byarufu Rogers lives and works in the northern part of Uganda as a teacher and is married with three children. He had to travel over 300 kilometers to come to the national referral hospital and only treatment center in Uganda to get treatment for an eye melanoma. It took him about two months on the hospital ward before he eventually started his radiotherapy treatment which was a big distress for him.
It was my first time to come to Mulago Hospital and my biggest challenge was not knowing how the system was working. I spent two month without knowing exactly what was going on until the Palliative care team came in and helped explain to me everything. They also helped me to start my radiotherapy treatment. I am happy now that I am about to complete and go home because I miss my family. It’s because of the love that I have for God that he brought me such a great team of nurses and volunteers of palliative care team who have given me strength and taken away my worries and fears. They have not abandoned me. Thank you for visiting me, getting me my medications from the pharmacy I wish this care could even go beyond when I finish my treatment and leave this hospital.

Vivian

One of the biggest challenges faced by many of our patients is the lack of adequate family and financial support while in hospital. This is partly because many patients travel long distances to come into the hospital which makes it difficult to come along with family members. In such cases, patients have had to fend for themselves, which is very challenging in the hospital. This is the situation Vivian found herself in when she came into hospital. The 27 year old lady was admitted with cervical cancer to receive radiotherapy treatment over a period of 8 weeks. The volunteers have been acting as her main carers, providing practical support like collecting her medication, helping her access meals, and wheeling her to the radiotherapy department for treatment.
I don’t think I would have managed to get treatment if you people didn’t help me. Thank you very much for your service. I wish every patient can also get what I have got.