I got cancer when I stopped taking ARVs

“In 2016, I started having diarrhea, vomiting, malaria and bleeding. When I went to Jinja Hospital for HIV screening, I was found positive.

I started on ARVs and all the symptoms disappeared but after four months, I stopped taking them because of lack of money. I had shifted to my father’s village in Kayunga, Mukono, with my children and it was difficult for me to get Shs20,000 for transport to restock the drugs from Jinja Hospital.

For about four months, I did not take the ARVs. I started feeling weak again and got very heavy bleeding. So my brother came and took me to Kiruddu hospital where I was admitted for two weeks and got several transfusions.

I was tested and found with tuberculosis. I was referred to the TB ward at Mulago hospital in September 2016. I then got ARVs again, which I took alongside the TB drugs and within six months, I was cured of the TB.
In 2017, I got abdominal pain and went to several clinics where the doctors said I had syphilis. I got syphilis treatment for more than six months but there was no change at all.

I became anaemic and fainted. I was unconscious for a whole week. I was taken to Jinja Main Hospital and was admitted for two months. I got transfusions and pain killers but my bladder became blocked, so I was taken to the Uganda Cancer Institute and was told to test for cancer.
I had a catheter and it took me about five months to complete the medical examinations that were required because I did not have the money. I had to do a biopsy, X-ray, CT scan, ear and brain tests, which all cost Shs160,000.

Since I had no caretaker, I slept on the veranda and I had no hope of getting treatment because I had not even done the required examinations. I tried to speak to a security official who connected me to a social worker. This social worker referred me to Little Hospice, Jinja.
After assessment, my file was opened there and they helped me foot the bills for the tests that I had to do. After two weeks, I was sent back to the cancer institute with a referral letter. At the institute, the doctor recommended that I start radiotherapy immediately because I had cancer of the vulva.

Family rejection
When I told my family that I had cancer, they told me to go back to our ancestral home where we are buried to wait for my death. When I refused to go, they abandoned me and said I was going to do everything on my own since I had no caretaker.

I started radiotherapy on December 15, 2018, and got treatment every Monday to Friday for three weeks, still with the help of the people at Little Hospice, Jinja. I am very thankful that they provided money for food and ensured that I got my treatment but I did not have where to sleep. Since I had a blanket and bed sheets, I squeezed myself among other patients at night to rest. After the radiotherapy, I was told to go back to Kayunga and return after three months. At my father’s home, my children looked so dirty, starved and not well taken care of. They were not going to school and were very sickly. My family told me to take them to their relatives in Mbikko, which I did.

Failed remission
By the time of the next review which was April, I had developed a swelling on my waistline that was bleeding. When a biopsy was done, the doctor said it was another cancer developing.

I had to go through radiotherapy again with more frequent and intense exposures. The first exposure was very effective because the bleeding stopped immediately. The people from Little Hospice, Jinja, then asked me where I had been sleeping all along. I told them at the veranda. They then connected me to a cancer hostel.
There is a very big change since the time I started treatment. I was so thin and could not walk easily but now I do. I have hope for recovery. I now take my ARVs very promptly but I do not know what my next treatment plan is.

I wish my treatment takes a shorter time so that I am able to go back and take care of my children. The problem now is that I am very weak and the doctors said I should not do very heavy work.
Today, people living with HIV/Aids live longer due to effective antiretroviral treatment but cancer and other non-communicable diseases are contributing to a growing proportion of deaths of those in this category. HIV/Aids and cancer care and treatment are provided free of charge by the government.

Challenges

The Uganda Cancer Institute is currently faced with a challenge of inadequate diagnostic equipment, with most of the tests done in private facilities outside the hospital. This costs patients large amounts of money. For example, the institute’s main radiotherapy machine currently performs below capacity, not withstanding breaking down on regular occasions.

The Cobalt 60 machine was installed in 1995 and has become less effective with its radioactive substance decaying off as a single patient takes long time while receiving treatment.
On a daily basis, the radiotherapy department receives about 100 cancer patients who need external exposure to radioactive waves to receive relief against cervical cancer, prostate cancer, breast cancer and other organ cancers.

Prevalence
According to Dr Noleb Mugisha, an oncologist at the Uganda Cancer Institute, there are times when cancer patients fail to respond to the treatment plans such as radiotherapy depending on the intensity, presentation, site and type of cancer. As a result, she says the duration of the exposure and length of time are increased to kill the cancer cells.

Common Cancers

Cancer in HIV patients
Kaposi’s sarcoma
Aids associated lymphomas
Children and youth
Burkitt’s Lymphoma
Retinoblastoma
Leukaemia
Lymphoma
Breast cancer
Gastrointestinal cancer
Oesophageal cancer
Gastric cancer
Liver cancer
Pancreatic cancer
Gall bladder cancer
Colorectal cancer
Anal cancer
Head and Neck cancer
Thyroid cancer
Ovarian cancer
Endometrial cancer
Lung cancer
Prostate cancer
Renal cancer
Bladder cancer
Testicular cancer
Penile cancer
Skin cancer.

October free testing/ discounts

International Hospital Kampala: Prostate cancer at 30 per cent discount, HPV-V brush at Shs125,000, PAP smear (Cervical Cancer) 30 per cent, breast cancer physical examinations.
Alexander Medical Center: Free doctor’s consultation and breast cancer screening, 50 per cent discount on cervical cancer screening (pap smear test) for two weeks.
UMC Victoria hospitals. Free breast cancer screening at Bukoto and UMC Entebbe clinics, free consultation, 50 per cent discount on extra investigation like, breast ultra-sound @ Shs30,000 and cervical cancer screening at @ Shs50,000, discount on cervical cancer vaccine.

[email protected]