Hagumimana Robert is a cancer advocate and medical student in Uganda pursuing an undergraduate degree of Medicine and Surgery (MBChB). He is currently in his 5th academic year.
My mother, Margret, was 52 years old when she died from pancreatic cancer complications in April 2022.
My mother first started experiencing symptoms in January 2022. At first, she experienced stomach pain, progressive weight loss, and lower back pain. But because she had always had stomach ulcers, she attributed the stomach pain to those, while the back pain she attributed to excessive housework. So she went to a nearby drug shop and bought over-the-counter medications for pain relief.
This is a common approach to illness in many African countries, including Uganda, where if someone experiences something abnormal within their bodies, they tend to keep it to themselves and wait to see whether it gets worse. If it advances, they self-medicate. If self-medication fails, then they go to traditional healers, pastors, or prayer camps. By the time they reach the hospital, it’s often too late, and they are diagnosed at an advanced stage.
While my mother’s pain subsided for a very short period of time after taking the medications, it then came back with greater intensity. So she went to a district hospital, where she was diagnosed with pelvic inflammatory disease and started a 14-day treatment regimen. But after 1 day of treatment, her pain worsened. She dropped the treatment, and on the same day, her younger sister told her that the white part of her eyes had started yellowing. So she went to a missionary hospital that could offer more health services than the district hospital, hoping for better care.
At the missionary hospital, she was found to have swollen lymph nodes. A biopsy was taken, and she was told to wait for the results for 1 month. She was discharged home with several medications, but once she got home, her condition worsened. Her pain had become severe, and she couldn’t sleep. She later went back to the hospital and was given morphine. After 1 week of waiting for results, she became progressively weaker. Even though her pain was under control, she had lost interest in eating and drinking.
Waiting for a diagnosis
Many people in our village were trying to convince my mother that she had been bewitched. They recommended many herbal medicines, and while she tried some, nothing was helping. Instead, her body continued to weaken, and she experienced appetite loss. Some people in our village suggested she go to the traditional healers for help. Others thought she should go and stay at a nearby church, as they thought it would help more than moving up and down in hospitals. My mother was desperate to try these paths, but my family eventually convinced her to be taken to a large public hospital in the capital of Kampala after realizing that she wasn't getting better.
In countries like Uganda, where full health care services for conditions like cancer are still found only in large cities like Kampala, it can be difficult for people to receive care. Some people could live as far as 1,000 miles away from Kampala, so it can be hard for them to arrive at the hospital in time and follow their treatment plan since they have to travel long distances. Some people in Uganda will say, “If l am sick and l am only supposed to travel to Kampala for treatment, then this is a sign that I am soon dying. Nobody has ever traveled to Kampala for treatment and survived, so it’s better for me to die in my home.”
After arriving at the hospital in Kampala, my mother received a computed tomography (CT) scan, which showed a mass on the head of her pancreas, and tumor marker levels were high. A team of doctors came to her bedside, including a gastroenterologist and oncologist, to discuss how she could be helped. A palliative care team was also there to help and share the bad news with us. During that time, l was doing my internal medicine clinical rotation in the same ward where my mother was admitted. It was the hardest experience l have ever faced in my life so far. However, l thank my teachers for being there to help my mother the way they could.
The palliative care team wasn't willing to share all of the information about my mother’s diagnosis at once, probably to avoid overwhelming her and our family. During the delivery of the bad news, l was the interpreter for my mother, since l was the only person who could understand both English and her local language. In the middle of the conversation, my emotions became too much, and l burst into tears. But my mother looked stronger and ready to receive the bad news.
My mother had hopes that she could receive treatment, but unfortunately, that was not the case. The surgical oncologist told her she could not undergo surgery because her cancer had moved to other parts of the body and she was very weak, so her chances of surviving the surgery were low. She also could not receive radiation therapy or chemotherapy because her cancer was fast-growing and would not respond to radiation therapy. They also thought the strength of these treatments would kill her faster than the cancer itself.
Supporting a loved one with cancer
Receiving the bad news that my mother had cancer was a very difficult moment for me and my family. But I had to believe that the oncologists were trying their best. I also had to understand that my worries and doubts couldn’t change anything. If you are caring for a loved one with cancer, I would recommend joining a support group for cancer caregivers. If there is not one available nearby, there are many groups available online where you can share your experience with others.
By taking care of yourself as a caregiver, you are better equipped to care for your loved one with cancer. In caring for my mother, I found that there are many ways you as a caregiver can support your loved one as they navigate their cancer experience.
1: Always seek information about your loved one’s care from medical experts.
As a cancer caregiver, you will likely have people, including friends and relatives, give you their views on how your loved one should be treated. For example, in Uganda, l have witnessed some patients leave oncology wards to go to traditional healers. In bigger towns like Kampala, I have also seen people hawking herbal medicines who are good at advertising and explaining how their medicines can treat different medical conditions. Similar information can be found online. Some patients may resort to believing these claims since they are cheaper and more readily available compared to traditional cancer treatment. Therefore, being careful about where you and your loved one are getting information about their treatment and progress is very important.
2: Be there for your loved one.
As hard as it can be, try to be strong and be there to comfort your loved one during their cancer journey. Reassure them that you are with them so they don’t feel isolated. This can also help prevent them from thinking too much about their medical condition and asking themselves questions like, “Will l return to my normal state again?,” “What if l die? Who will look after my children and business?,” and “How will my family survive after I am dead?” I have seen how having these kinds of spiraling thoughts can often lead to anxiety, depression, and other challenges. You can also encourage your loved one to join a cancer support group to help inspire them and bring them hope.
3: Start positive conversations.
Try not to let your conversations with your loved one always be about the severity of their medical condition. Instead, start conversations that will bring a smile to their face. You may also invite counselors and psychologists to meet with your loved one since they are trained to address the psychological needs of people with cancer.
4: Encourage your loved one during treatment.
Since cancer treatments can take a long time and are often very expensive, some people with cancer may need a lot of motivation to tolerate them and stick with their treatment. Where possible, you may encourage your loved one to have conversations with their spiritual leaders, like a pastor or imam, to help cope.
5: Take advantage of financial resources.
Cancer can be an expensive medical condition. Ask your loved one’s health care team about what financial resources are available, because there will always be unexpected expenses that will pop up.
The author has no relevant relationships to disclose.