Aim of the study
Setting and population
Procedure and data collection
1. Has anything bothered you because you have cancer?
Probes: If so, what has bothered you? In the hospital? Outside the hospital? Before? Now?
2. Has your cancer disease affected your life?
Probe: If so, how?
3. Could the hospital and the hospital staff do anything to help you?
Probes: If so, what could they do? Before? Now?
4. Could anyone outside the hospital do anything to help you?
Probes: If so, what could they do? Before? Now?
5. What is your view of the future?
Physical effects of Cancer
Now, even when my relatives wash dishes, I feel like I cannot do it. When they wash clothes, I can't join them because I get tired when I touch one cloth I say to them ‘I’m tired let me have a bit of rest', which makes me feel bad when I see others can do this and I can't.
Emotional effects of Cancer
For it is a long process, perhaps many arrangements at home fail. For what it was, we as children with cancer have difficulty learning, which is a problem. The parents as well find it difficult to bring you [to the hospital] and then you look at the income itself, the rest of the brothers need to attend the hospital. Over three years, it becomes a problem.
I was stigmatized…because those suffering from blood cancer are thin, similar to people suffering from HIV…so we Tanzanians, many are doctors by eyes so when he sees without testing you, he starts to spread rumors in the street, that a particular person is a victim [of HIV].
You are prescribed [chemotherapy] drugs which cost eight hundred thousand [TSH] or three hundred thousand, but you don't have the ability to purchase those drugs. You have to go around and seek for those drugs, and if you don't find, you have to go home. And then your condition becomes worse.
…one day, my parents were told certain injections were going to cost almost millions [TSH]. It was nearly two million for 24 injections until I would finish the drugs. I have been given eight injections only. Now, other injections remain but I have no money and now we were supposed to get money to finish up.
When I first came here, I was told the treatment is free, the medicine is free, food is free, and you don't even pay for hospitalization. In contrary, when I came here, the second day when I was seen by the doctor, I was prescribed and told to go outside to buy medicine. You find that my dose costs five hundred and fifty thousand [TSH] for each dose, and I have to take it twelve times, so there is a small possibility of me getting them all.
Poor early Cancer care
When we came [to the hospital], they sent us to the ward of children with sickle cell. They investigated, and the results showed no sickle cell. But they gave me medication and after the drugs, the swelling of my lymph nodes went down, so they let me go back home. When I went home, I stayed one week, and it started again. We came back here again, they examined me and found no sickle cell...finally, they tested my bone marrow and when the results came, it showed signs of cancer.
At the hospital, they said 'we are not sure about this disease, but we shall give you these drugs. Go and buy and if you don't see any improvement, come back’. I started taking them, but the swelling remained; so the second month, we returned to the hospital. They said, we can't do the investigation here, so they referred me to Ocean Road.
Poor Cancer care
I suffer much pain and the pain becomes worse at night. If you tell the nurse that you want pain medication, you are told ‘no pain medication and the hospital pharmacy is closed, and we cannot give you any pain medication until you are seen by your doctor, so you have to sleep with your pain. Pain becomes more severe and it can’t cease.
Need for improved Care in the Hospital by the staff
When you are given medicine [and] when the drip is finished, it should be removed as the parent is not supposed to touch it. Sometimes, you may have three drips to be changed and you may wait for the nurse, who comes late. So, you may stay with the drip [in your arm, finished]. And, if you stay with it for a long time, the blood starts to flow back, and the line might block and it is difficult to run another drip, which leads to inserting a new line. So, it becomes an inconvenience. It becomes a problem.
Need for love and compassionate care by hospital staff
Need for community support
Need for improved care and treatment in the hospital
They have to improve. They should buy radiotherapy machines. Even though they have two, one of them is not working so there is only one. And it is very difficult for a technician to come, so we ask that to be improved and increase the number of machines.
On the side of the government, I request them to establish special fund to support cancer patients and the radiation machine. They could prepare regional hospitals to cater for those services. Because we who live outside Dar es Salaam, we are far away from the place where cancer services are provided. For example, when a person is thinking about coming here, he starts thinking about the fare to come here.
Need for increased education about Cancer
If we went there [to the doctors], when we are sick, they should not give us drugs, because these drugs themselves will be increasingly toxic. Because they give you only medicine without doing any test. If you have finished, they give you some other. They don't test.
I would like the community to know the causes of cancer, although there are some cancers which are inherited, for example blood cancer, some are caused by the particles in the mining. So, my thinking is to have them receive education about cancer as they receive about HIV.