Over the past five years, many fundraisers in the form of car washes, marathons, movies have been held in support of cancer patients and generally in the fight against cancer. Over time, we have seen the #SaveCarol campaign in April last year that raised UGX 300m with which she was taken to the US for treatment, the #HelpRosemary campaign that raised over 130m and saw to the building of the new waiting shed at the Uganda Cancer Institute by NTV Uganda, the Rotary fraternity of Uganda along with Centenary Bank through various marathons set up a cancer centre at Nsambya Hospital aimed at providing diagnosis and treatment at subsidized rates.
A number of people have largely benefited from the generosity of Ugandan hearts but sadly, a larger number has not. On a given day, people from all walks of life sit in the waiting shed at the Uganda Cancer Institute at Mulago Hospital languishing in pain as they wait. For a miracle, for a consultation, for a pronouncement of death, a free dosage of medication or for most, they wait for help from a kind stranger. One of these people is Patrick, a 40-year-old man from Mbale district who was diagnosed with skin cancer in September 2012 and has been through the throes of this deadly disease without a victory in sight. Five years and one limb later, Patrick sits in this shed, which has now become his home as he waits upon a means of affording his next dose of medication that he hopes will bring some relief.
Patrick recounts the experience of what started out as a small wound on his index finger and eventually led to the amputation of his hand.
“This wound kept bleeding. It became swollen and itchy. I failed to find medicine to make it better. Soon it started releasing pus and it became smelly. This was in 2011. I was staying in the village and my friends advised me to consult a witch doctor since the wound was only getting worse. I was hesitant at first because I had never stolen anything, I wondered who would bewitch me. I am a good person. Eventually, I went to the shrine but it only got worse. My right hand got swollen too. This was in July 2011. My wife then left me because she didn’t know what to do with me. I had no one to take care of me. When maggots started coming out of my hand, I made a decision to seek more help. I was hesitant all along because I didn’t want to leave my four children without a father. A friend advised me to go to Mulago in Kampala and through group effort, money was raised for me to come here”.
Eventually, I went to the shrine but it only got worse. My right hand got swollen too. This was in July 2011. My wife then left me because she didn’t know what to do with me. I had no one to take care of me. When maggots started coming out of my hand, I made a decision to seek more help. I was hesitant all along because I didn’t want to leave my four children without a father. A friend advised me to go to Mulago in Kampala and through group effort, money was raised for me to come here”.
“In December 2011, I woke up very early one morning and went to the bus park. The conductors refused me to enter the bus due to the state of my hand but since I had collected some money from my neighbors, I was able to get a special hire to Kampala. I stayed in Mulago for 2 months without any attention but one day a lady who had come to visit a patient asked me what was wrong. By now, I had tried buveera on my hand. I used to sleep on verandas and anywhere else I could find in New Mulago. On removing the kaveera, maggots and flesh fell out with it. The lady took me to a doctor. I was examined and then admitted for two weeks before any diagnosis was made. By this time, both my hands were swollen that I couldn’t do anything on my own. I had to beg someone to feed me. I soon met a saved woman who helped me, she would bring me food, clothes and offer me support.”
On removing the kaveera, maggots and flesh fell out with it. The lady took me to a doctor. I was examined and then admitted for two weeks before any diagnosis was made. By this time, both my hands were swollen that I couldn’t do anything on my own. I had to beg someone to feed me. I soon met a saved woman who helped me, she would bring me food, clothes and offer me support.”
“I spent 2012 in Mulago. Through this year, tests were being run and the doctors were seeking to find was wrong. My legs too got swollen and the doctors advised me to rest. I was later told that I had cancer of the skin. By now, all the flesh had eroded on my hand and I was left with only bone. I begged the nurses to cut the hand off because it couldn’t stop painting. In April 2014, the arm was amputated at the elbow. I was bed ridden for three months after which I was dismissed. At the start of 2015, my hand started swelling again. I came back to Mulago and the hand was further amputated.”
“Sometimes we spend 4 months without getting medication because it is not available. The wound had healed but it became fresh again because I missed a dosage of medication. I came back to Mulago on 8//2/2017 and I haven’t received any medication since.”
“For now as I wait for medication, I sleep in the waiting shed, because I cannot afford to keep coming and going. The doctors give us days on which they can see us and then prescribe medication for you. I have had these prescriptions since February but I cannot afford two hundred thousand shillings for the medication. This medication is not free. There are some medicines that are provided by the government but they often run out so fast because we are many who need them and sometimes the medicine prescribed to me is not available.”
According to the auditor general’s report, the government of Uganda spent UGX 72 million for each of the 140 senior officials who were sponsored for treatment abroad, of which 22 of these were treated for cancer within the last three years. This sum excludes air ticket, accommodation and other related expenses (Daily Monitor). This is the same government whose country’s main referral hospitals are at 40- 45% staffing, lacking critical equipment and dedicated staff. What hope is there for the 19.7% of Ugandans who are living in abject poverty and cannot afford to be flown out to other better-prepared countries for medical help?
Cancer is one of the leading causes of death in Uganda with the common cancers being Cervical Cancer, Prostate cancer, Breast cancer, Kaposi’s sarcoma, Burkitt’s lymphoma, lung cancer and skin cancer. Although it can be treated if detected and treated early, many people seek treatment in later stages reducing their possibility of full recovery.
The only radiotherapy machine that had served Uganda’s population of 39 million, steadily rising at 3% per annum, eventually broke down in March last year after serving for over 20 years, leaving well over 2000 cancer patients without proper treatment in Uganda. A number which has since increased, due to the increasing prevalence of cancer. Talk of procuring a new cobalt 60 radiation machine has not been productive as the machine has not been shipped in yet, 13 months later.
For the people who do not have the social muscle to launch fundraising campaigns, the financial muscle to seek proper medical attention overseas, waiting for this machine is all they can do. An intervention from the government or any other well-wishers is their only hope. Just like Patrick, they sit in this shed day in and day out, waiting for the health system to eventually remember them too.
This blog was first published on Shanine Ahimbisibwe’s blog