Patient story: Genzeb

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Genzeb* is a 45 year old woman with cervical cancer which was diagnosed 4 years ago. She received radiotherapy as surgery was not an option. Since receiving radiotherapy she has become incontinent and has radiation induced colitis (damage to the large intestine)**. 3 weeks prior to our visit she had received a 2 unit blood transfusion at the Black Lion Hospital, as the colitis had resulted in her being anaemic.

She was prescribed mesalazine suppositories to try and reduce the rectal bleeding. These are expensive, so her brothers and sisters pay for these as she is unable to afford them. She also has metronidazole vaginal douches to reduce the odour from her tumour. She receives a monthly grant from the Tewolde Medhane Comfort Fund, food support and sanitary products.

Genzeb is divorced and lives alone in a ‘condominium’. These are flats built by the government which are rented but can then be bought. Genzeb’s father had bought their flat but had died 10 months previously. There is now disagreement between Genzeb, who had lived with and cared for her father, and her 6 siblings about who owns the flat.

Genzeb follows the Christian Orthodox Tawahido religion and is part of a group of a spiritual and community support group with 12 members (Tsiwa). The group meets monthly to honour a saint, sharing a meal and engaging in prayer and singing. The small shrine in her house rotates to the other members of the group each month. Genzeb had set up the group because her brother had survived a serious accident.

When asked what difference Hospice Ethiopia had made to her life she replied “previously I couldn’t afford to get to my appointments at the hospital. I have nobody else who cares for me and wouldn’t be alive without Hospice Ethiopia’s support. Your service does a lot of important things, for example visiting people in their own homes. It is an example that other organisations should follow”.

*Not her real name

**It is reported that to increase the number of patients treated by radiotherapy and to reduce the waiting list at the Black Lion Hospital, the dose of radiotherapy per session was increased and the length of the course reduced. This has now been stopped due to the sharp increase in the side effects experienced by the patients.

Patient video: Kalkidan

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Kalkidan, a patient of Hospice Ethiopia in Addis Ababa talks about her diagnosis and the difference that the care she has received from Hospice Ethiopia has made to her life.

Please note permission is sought prior to taking all photographs and videos. Names have been changed to protect privacy. Our thanks to Alan Miller for producing the video. 

Patient story – Afework

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Afework is a 60 year old Christian Orthodox man with throat cancer. It was diagnosed a year ago when he noticed discharge from his nose. Following diagnosis, he received 34 treatments of radiotherapy and 8 cycles of chemotherapy. Initially, post-treatment, he had severe radiotherapy burns to his neck (we were shown a photo) and the skin was very damaged. This has now healed but he continues to have a very dry mouth and therefore difficulty swallowing. He had lost weight over the last year due to this.

Afework lives with his wife and has 4 grown up children. He worked as a driver for 32 years and is hoping to return to work, as there was no sign that the cancer had spread on a recent CT scan.

He was not taking any regular medication although we suggested he try chewing gum to stimulate his own saliva (artificial saliva is not available in Ethiopia). Kalkidan checked his mouth and there was no sign of candida (thrush) infection. She discussed his diet with him, particularly bearing in mind he looked (and has been told) that he is anaemic. He receives food support from Hospice Ethiopia in the form of rice, oats and teff which his wife can make into a “porridge”. A doctor had advised him to get Plumpnet (a high calorie drink) from the local Health Centre. However, when he went to the Health Centre he was told it is only available for mal-nourished children.

The nurses from Hospice Ethiopia will continue to offer him and his wife advice and support.

Patient story: Yosias

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Yosias is a 70-year-old man who follows the Christian Orthodox religion. He lives with his wife and has three grown-up children, who visit occasionally.

His diagnoses include leprosy (of which his wife is unaware), asthma and hypertension which caused a stroke leaving him bed-bound in a small room for the last 9 years – he has not left this room. He stopped taking his leprosy medication following his stroke.

He was identified as having palliative needs by a Community Worker. He is paraplegic and completely immobile following the stroke and nerve damage from leprosy. This nerve damage has resulted in hand deformities which means he needs to be fed by his wife. He has a sacral pressure sore and multiple ulcers on his hugely swollen legs. He also suffers from nerve pain in his legs and urinary incontinence.

The nerve-type pain improved when he was prescribed amitriptyline at night. The Hospice nurses also keep him supplied with sheaths for his urinary incontinence along with pads and dressings for his sores.

Due to minimal income, he receives food support from Hospice Ethiopia. A food support service has been created due to the high national inflation rate, causing starvation). To have survived 9 years in bed with multiple serious health conditions is a tribute to his carers, notably his wife and support from regular visits from Hospice Ethiopia.

Patient story: Berknesh

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Berknesh is a 40 year old woman who was diagnosed with HIV 4 years ago, not long after her husband died (he was 30 years older than her). He was Romanian and they had met at the Romanian embassy where they both worked. After their marriage, they lived in a comfortable house, with nice clothes and possessions. They had a son together, who is now aged 10.

Four and a half years ago, Berknesh’s husband was involved in a serious car accident and could no longer work. He subsequently died from his injuries. After her husband’s death she became depressed and bit by bit had to sell their possessions to survive. In order to earn some money, Berknesh became a sex worker which is how she caught HIV. She declined to take anti-retroviral medication for her disease as she felt the disease was a punishment from God for her sex work. She now lives in a one-room house and is struggling to pay ETB 3,000 (£42) per month in rent. Last year she became unwell from HIV and was so desperate that she went to the local woreda office (council), where they gave her some food support and referred her to Hospice Ethiopia. After several visits from Hospice Ethiopia’s nurses, she was persuaded to take her anti-retroviral medication, and her condition improved, but she says she feels ashamed of the way she looks (she has lost weight, has thinned hair, and skin nodules) and so has no contact with her family and former friends. She receives financial and food support from Hospice Ethiopia. Her mood remains low as she constantly thinks about all the things she has lost since her husband died. She has contacted the Romanian embassy about receiving her husband’s pension but has been told she does not have the right documentation to claim his pension. She has no contact with her husband’s family in Romania including his older son from a previous marriage.

Kalkidan spent time talking with Berknesh, providing psychological support and encouragement. Long-term financial support from Hospice Ethiopia’s Tewolde Medhane fund is not sustainable. As Berknesh’s disease is now stable on medication, she needs to find employment as her prognosis is good.

Patient story: Ayana

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Last November our trustees visited Ayana with HE Nurse Kalkidan. She is a 40 year old female patient with HIV and severely reduced mobility due to a presumed toxoplasmosis infection which damaged her nervous system 21 years ago.

She was married to a policeman and has one daughter. Following domestic violence she became divorced and has been bedridden due to her damaged nervous system for the past 21 years. Her sister brought up her daughter. Ayana was referred to Hospice Ethiopia by a Community Volunteer Worker. On the first visit the nurse found Ayana lived alone and was severely depressed and suicidal. Her 24 year old daughter visits her fortnightly to wash her.

Hospice Ethiopia has arranged for Ayana to receive a monthly grant from the Tewolde Medhane fund which allows her to pay for a maid to prepare her food and be a companion to her. She lives in her parent’s house, but her sister wants her to move out so that the house can be sold and the money divided between them. This is a cause of great anxiety to her.

Nurse Kalkidan organised the prescriptions for several medications: Anti-retroviral medication, amitriptyline for neuropathic pain, co-tramoxazole, and Baclofen. Kalkidan also issued some antacid oral liquid as Ayana had a new complaint of abdominal distension and indigestion. Despite being bed-bound for 21 years her skin and nutrition were good. She is continent and her bowels are open daily.

Ayana told Nurse Kalkidan that she felt she was only alive today due to Hospice Ethiopia’s regular visits to her.

Patient story: Kia

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Jamie and Sue visited Kia during their recent trip to Addis Adaba. She is a 35 year old female patient with breast cancer. She follows the Muslim faith from which she derives great spiritual support.

She received her diagnosis 4 years ago and following a biopsy she underwent a left mastectomy at the Tikur Anbessa Specialized Hospital (TASH), and subsequently received 8 cycles of chemotherapy. In June 2024 she developed vaginal bleeding and underwent further surgery for ovarian cancer, along with an endometrial polyp. The ovarian cancer is a probable secondary cancer to the original breast cancer. She has been advised that further chemotherapy will not be beneficial.

She lives with her husband and 3 children aged 9, 8, and 5 in a single room house. Her husband sells fruit and vegetables from a small road-side stall. Her 8 year old daughter has severe life-long disabilities. She is unable to walk, talk, or feed herself so needs round the clock care but does go to a local school for special needs during weekdays. Kia receives a monthly grant from the Tewolde Medhane fund and intermittent food support from Hospice Ethiopia.

She has been prescribed anastrozole (hormone treatment) for her breast cancer, which is giving her menopausal type symptoms. She takes ibuprofen as required for back pain and also Sildenafil for Reynaud disease-type symptoms of her fingers. This medication is usually prescribed for male impotence and we shared some giggles as we suggested keeping it away from her husband!

Despite the very difficult health, family, and financial situation, Kia was cheerful and at peace with herself. She commented she would not be able to cope without the support from the team from Hospice Ethiopia.

Patient Story: Fetla

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When we were in Addis Ababa earlier this year, 3 of our trustees visited Fetla. This is her story.  She is 50 years old and is married, living with her husband and their 2 children. As an Orthodox Christian, she feels supported by her religious faith.

She was recently referred to the Black Lion Hospital with a likely cancerous breast lump and the hospital made a diagnosis of breast cancer with a cerebral metastasis (the cancer had spread to her brain). The hospital had offered to do a fine needle biopsy (presumably of the breast lump) but no hospital records or letters were available to see. Fetla had received 5 doses of radiotherapy to her head.

She also received domiciliary support from her local health centre and 2 health centre nurses visited her while we were present. This is the first time we had seen an outreach team from a health centre visit a patient in their own home.

Her symptoms of blurred vision and ataxia (poor balance and coordination) improved when she started taking the steroid dexamethasone. Her constipation was treated with bisacodyl and she was also prescribed pantoprazole to protect her stomach from ulcers which could be a side effect of the steroids.  Her nausea and vomiting had improved on the antiemetic medication metoclopramide.

Nurse Kalkidan had established that Fetla had been made aware she had cancer, but not that the disease had spread to her head. She spent time talking with her providing psychological support and encouragement and will visit her again in 2 weeks.

Patient Story: Genet

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When we visited Ethiopia in February 2024 we met Genet, a 57 year old spinster. She is a Protestant Christian and has an adopted daughter who had recently been married.  Genet lives alone in a rented single room house. Before becoming ill, she had worked in a school, but was now unable to work and had no income, so receives a monthly grant from the Tewolde Medhane Fund (previously known as the Comfort Fund). She learned about Hospice Ethiopia from a friend so she referred herself to Hospice Ethiopia. Prior to this she had received 7 doses of chemotherapy at the Black Lion Hospital for her incurable colon cancer that had spread to multiple sites in her liver. The chemotherapy had made no impact on her disease and she had not been offered any other anti-cancer treatment such as radiotherapy.

Genet had been prescribed tramadol for her pain by the hospital for a neuropathic (nerve) type pain. When she was first assessed by Nurse Kalkidan, her physical problems were abdominal pain, fatigue, reduced appetite, constipation and intermittent vomiting. She had been prescribed a steroid medication for the vomiting by the hospital. During our visit Nurse Kalkidan adjusted her pain killing medication adding in metoclopramide and omeprazole for the nausea along with gabapentin (300mg daily) for the pain and bisacodyl to prevent constipation.

She is being supported spiritually by her religion and church connections. She was counselled by Nurse Kalkidan and encouraged to remain as active as possible (she goes to church and is able to walk around). We explained the difficulties of treating fatigue and advised eating whatever she fancied whenever she felt hungry.

Patient Story: Yoseph

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Yoseph, aged 36, lives alone and is an Orthodox Christian. He used to work as a guard and a driver on a compound but he had to abandon his career in driving as was unable to turn his head. He went to the Black Lion Hospital in Addis Adaba with a lump in his neck and was diagnosed with a nasopharyngeal cancer which had spread locally. He received only 2 cycles of chemotherapy as he was unable to pay for any further treatment. At his visit from Nurse Kalkidan, he had an ongoing odorous discharging sinus and a huge mass on the left side of his neck with secondary spread to the skin as far down as his clavicle (collar bone).

Although living alone, Yoseph has significant physical and psychological support form a network of nearby friends. His son lives with his mother and some contact remains with the patient. His voice is hoarse (probably due to vocal-chord paralysis) but interestingly he complains of no pain and the only treatment at present is herbal. Nurse Kalkidan advised him to reconsider further cancer treatment (radiotherapy might be of benefit). Apart from daily topical metronidazole which has controlled the odour, he has not been prescribed any other treatment or medication (except herbal treatment).

Hospice Ethiopia’s nurses will provide ongoing psychological support.