My name is Justina Simpungwe and this is my story
‘What is a biopsy?’ Justina’s younger sister asked her over a long-distance call to New Zealand from Zambia. Justina feared the worst. She had known for a while that her mother back home in Kitwe was unwell, and being in the medical profession, the question triggered alarm bells in Justina’s head. She asked her sister to make sure their mother underwent the procedure right away and asked that her results be scanned and e-mailed to her as soon as possible.
By the time Justina received the results of the biopsy, she knew her mother had cancer. Justina had migrated to New Zealand for work and was in the process of arranging to have her children join her, but the news of her mother’s ailment caused her to change her plans. She decided to take unpaid leave from her employer in New Zealand and travel back home to be with her mother. When she arrived in Zambia, Justina was shocked at the state her mother was in. The woman she knew as a strong, energetic, mother of eight was frail and bed-ridden. Justina’s father, a medical professional himself, was by his wife’s side and tried to put on a brave face although he would break down when his wife wasn’t looking.
THE INDIGINITY OF CANCER
Justina’s mother was diagnosed with colon cancer and a colostomy (a surgical procedure where the incised end of the large intestine is pulled through the abdomen wall and attached to a bag as a way to channel human waste from the body) was recommended. Due to the intimate nature of the procedure, Justina had to find a way to explain to her elderly mother what a colostomy meant and what the procedure was about. She sat her parents down and explained to them how a colostomy is conducted. As Justina had guessed, her mother refused to have the procedure done. She said she would rather die than go through a procedure of such an intimate nature. Knowing it was crucial that her mother undergo the procedure, Justina asked a woman who had undergone a colostomy to come and talk to her mother. The patient spoke to Justina’s mother and convinced her to have the procedure done.
After the operation, Justina’s mother was referred to the Cancer Diseases Hospital (CDH) at the University Teaching Hospital in Lusaka. At the hospital, Justina’s worst fears were confirmed. Her mother’s cancer was at an advanced stage. Radiation treatment was recommended although the doctors explained that the treatment would be palliative (treatment to help ease pain and suffering but not necessarily to cure disease) due to the advanced stage of the cancer. At that time CDH was an outpatient facility and with limited bed space available at UTH, Justina had to book herself and her mother into a hotel where they stayed whilst her mother underwent radiation treatment. The radiation treatment took its toll on my mother. She was vomiting and very weak such that, although the hotel was close to the cancer hospital, she could not walk. So, three days a week, I would hire a taxi to ferry us to and from the hospital. I value the time we spent together in Lusaka. We talked a lot about old times, when she was growing up and when she was raising us,’ says Justina.
DEALING WITH MUM’S IMPENDING DEATH
Justina and her mother returned to the Copperbelt after the radiation treatment and, for six months, all seemed well. Justina’s mother was an established member of the Catholic Church and she encouraged the family to get together to pray and read the Bible. The family was pleased with Justina’s mother’s recovery and for a while Justina let them believe that their mother was getting better. ‘Initially, I didn’t tell them the treatment was palliative because I wanted to give them a chance to breathe. So they believed mum was getting better. But when her condition started to deteriorate again, I told my father the truth,’ she says.
As Justina’s mother weakened, she refused to be taken back into hospital as she knew her time was drawing closer. She was kept at home on medication to relieve the pain until she lost consciousness and was taken to the hospital a week before she succumbed to the cancer. Being in the medical profession, Justina feels she had an advantage over her siblings because she understood what was happening to her mother and was able to come to terms with it. However, on the other hand, being in the profession meant she suffered the anticipation of knowing the pain and suffering her mother was going to experience even before it happened. ‘It was very painful for me. For instance, my mother would be prescribed medication for pain relief and I knew that oral morphine was a more effective medication, but it was not administered because it was unavailable. So, knowing that she could be spared some of the pain was torture for me,’ Justina remembers.
THE IMPORTANCE OF A SUPPORT SYSTEM
It was whilst she was nursing her mother that Justina started to fully appreciate the importance of family support and counseling for cancer patients and their carers. Her experience has made her more sensitive to the needs of cancer sufferers. Before her mother was diagnosed with cancer, Justina avoided oncology as she found it too stressful and depressing. Now she works at supporting cancer patients through her cancer advocacy work. Justina is the current Chairperson of the Cancer Support Network of Zambia (CSNZ) which aims to raise cancer awareness, to put cancer on the political and social agenda, and to support all stakeholders in the prevention and treatment of cancer. As someone who has experienced cancer as a medical professional, as an advocate, as a community worker, and then personally through her mother’s experience, Justina believes the way forward is for medical professionals, social counselors, carers, and survivors to work together to find ways to provide a holistic approach to treatment for the overall wellbeing of cancer patients in Zambia.
This story is EDITED from the book “NthanoZathu: Breaking The Silence On Cancer In Zambia” – a Zambian Cancer Society publication written by Ellen Banda-Aaku and first published in 2015.
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