A Ugandan Cancer Patient's Experience

May 15, 2005

I guess I’ve missed a few days of writing because we’ve been just getting established and doing work inside Kampala. We are realizing more and more that the places to make the biggest impact are not inside the city, especially not at Mulago. The hospital has been around for a very long time and there are systems in place that really are hard to work with and be able to treat patients. The other people that are staying at the Mulago Guest house are working on endocrine projects outside of the city. The leader of the project has been working in Uganda for nearly ten years and said that each year they are at Mulago less and less. As a future medical student, it has been useful for me to walk around the hospital and shadow doctors to see how things are done in the medical world. However, I’m always aware that I am seeing the worst of the worse cases and that the way that diseases are diagnosed and treated are pretty much as far from standard of care as you could possibly be.

On Wednesday we spent the entire day going from one orphanage to another looking for one that will work for his study. The requirements are that they are community run, not significantly funded outside the area, the children are between 6 mo. – 10 years, there is little to no medicines in the home, and that the caregivers have little training in basic distribution of these medicines. You would be surprised how many times we struck out searching for these things. It’s not a bad thing, but looking for an orphanage that is similar to Need for All has been a huge challenge because every one we visited was so well funded. We visited one that has sponsors for the kids in the UK and a nurse who comes every night. It has the capability to distribute numerous hospital drugs and start IVs. There is also a mother who is trained in first aid and administering basic medicines that we would be providing. Another had an ICU building for the children and had a team of administrative people in an office with 3 computers. We were happy to see so much invested in so many children, but also sad that we haven’t been able to find a good place to give a medicine cabinet to.

Finally, today we found the perfect place. Ideally we want three like it, but at least we found one to start. It is called Little Angels and it is run by a Ugandan business man who had a heart for abandoned babies and started the home about 10 years ago. Max has spent his life trying to help these children. He is very grateful for all of the help and without him saying directly, you can tell he relies on God to provide what the orphanage needs. He said that every time they have needed something, somebody has stepped in to bring food, a refrigerator, clothes, school supplies, and repair services for the house. When we looked at it, we all were thinking the same thing – that this is what we would have liked Need for All to Be. It makes it a lot easier to say that the kids need to go to Watoto or there needs to be drastic changes to the way things are done there. The children listen to Max and are super polite. He personally pays for their school fees and even though he doesn’t know what they will do for higher education he plans on supporting them for the rest of their lives. I was very encouraged today to see what he has done and hope that we can somehow find a few ways to help them with what they need.

Yesterday was an interesting day at Mulago. We followed one of the orphanage kids, Joshua, as he went through his last chemotherapy treatment. He was diagnosed with Burkitts lymphoma at the end of February and since then has been living with an uncle in Entebbe. The staging is different here for cancers. They put him at a stage C, but when Troy looked at his records he said he would be classified as stage 4 in our system. Joshua comes in every two weeks for a day of blood tests, then chemo treatment, and a Lumbar Puncture. Back home, all of this would be done in a single or double patient room with only a few hours in the hospital. We decided to follow Joshua to spend time with him as well as to find out what a normal day of treatment for a cancer patient is like.

Joshua and Wyclief (his uncle) arrived by Mtatu at about 8:30 in the morning and signed him in to the cancer ward. He was told to wait outside for his named to be called so he could get his blood drawn. Then they went and grabbed breakfast and gave us a call. By 9:30, we were visiting with them and sitting outside the ward waiting for the lab to call his name. At around 11:00, he finally got his draw after being told he had initially missed his name because we were in a different building making copies of his records. After his draw, we had to wait for the results. By 12:30 we got his paperwork and had to walk to the pharmacy to get his drugs. One of the drugs was not at the pharmacy so Wyclief walked to a pharmacy outside the hospital to get it. Then we walked to a different building where the infusions take place. Joshua had been in good spirits all morning, but after being outside the infusion room and then seeing another child throw up from the drugs, he put his head in his hands and got really quite as he waited. Wyclief had to go again to get a plastic bag and washcloth for when Joshua’s stomach reacts to the drugs. By 1:00 it was time for Joshua. However, it Wyclief had not pushed his way through a crowd to be near the front, I think it would have been much later. Joshua began to cry hysterically as the nurse prepared his hand for the IV. I think it was more because he knew he was going to be sick than it was because he didn’t like the needle. Sure enough almost immediately after the first medication was pushed, he began to throw up his breakfast. Rachel thinks it might be because the anti-nausea medicine was given at the same time as the other drugs. It doesn’t have time to take effect. Plus, the medications are not given as a drip over a long amount of time, but in a matter of 30 seconds directly in. After the chemo, we walked back to the cancer ward where Joshua took a seat on a chair and immediately fell asleep. He stayed asleep for an hour or two while we waited for the LP. The doctor said he wouldn’t be ready until at least 4 or 5 and Wyclief was content with that answer as he went to stand against a wall and wait. I am sure that for the other 5 treatments, he did the same thing and didn’t leave the hospital until 6. While Ross was there he would have none of the waiting. He felt partially responsible for Joshua missing his name earlier in the day so he tried to do what he could to make it work faster. He went into the office where he found the intern eating and drinking a Coke, one nurse sleeping, and the other just sitting in corner. He closed the door and explained that they needed to try to get his patient done a little faster because he had a long drive ahead of him. Although it is a nice gesture, and probably helps a little, it does nothing to change the system and how much people wait. It didn’t even help Joshua that much. He got his LP done at just before 4, which is only about an hour earlier than he would have without Ross. Plus we succeeded in making the doctor and a few nurses not like this particular group of Mzungus too much. Oh, well, at least the attending will be a different person and since they’re in charge, we’ll have a new chance at first impressions.

It was great to see what a day in the life of a cancer patient is like, but I have to say, it’s a lot of waiting. I hope that I think about Joshua’s experience every time that I am in the hospital so that I do not complain about my own wait times in hospitals. At least I get to wait in an air-conditioned room that I most likely have to myself. I won’t have to stand outside in the hot sun or sit in grass covered in what’s left of vomit, urine and dirty washing water that was emptied in front of the hospital. I know that I’ll probably forget and end up whining about something, but I really hope that every time that happens, I look back at Joshua and be thankful. I also hope that as a future physician I am sensitive to my patients. I want to give each one the individual care and time that they deserve while not making them wait extremely long amounts of time to see me.