Harriet Kawala starting Chemotherapy

After Harriet's diagnoses that confirmed cancer in a sever stage, she was transferred to the cancer institute where she is going to receive her chemotherapy from.

When we visited Harriet yesterday, the nurses told us that she was unconscious in the morning which required some oxygen supply to her brain.

Harriet is was very weak but a caring present of Emmanuel who was encouraging her made her laugh many times. It seems that simple things such are hugs, smiles and expression of love can really make a difference.

After visiting several pharmacies we got her chemo drugs and some nutritional supplies. 

The whole chemotherapy doze is around 250.000 Ugandan Shillings, the doze is for 4 days, and if she feels safe enough to go home, she would be realised for home treatment where she would continue with nutritional supplies and in 3 weeks she would come back for another chemotherapy. 

The sad thing is that the security officers warned us not to leave the drugs for any single minute alone as the previous day they were stolen from a patient who came for her chemotherapy treatment, only short visit to the bathroom made someone take the drugs and she needed to return home and miss her doze. Sad thing is as the drugs may be relatively cheap for most of us, they are extremely expensive for Ugandan's because only one type of drug we bought costs 65.000 which is half of the salary working Ugandan receives. Those drugs must be mixed with others, where one small IV capsule is 45.000 Shillings.

Nutritional drinks and vitamins Harriet was advised are almost £20 per each. This is something that can keep her strong during the treatment.

The Chemotherapy meant to prolong her life and she needs a strong motivation to cooperate with the doctors and us. 

We also call for any help regarding her medication and nutrition food. 

FROM SIENNA HOWELL  - WHISPER VOLUNTEER 

My first image of Harriet was her sitting in soiled clothes on a bed that she had urinated in. she and her sister were fighting, it was 11:30am. Harriet was supposed to go and get the dressing changed on her face at 9am. Her sister Sarah kept insisting that Harriet wouldn't go. My first thought was, "she is maybe 110 pounds soaking wet, how can she resist doing anything?
Thankfully by that time, we just lifted her up and took up two floors to the oral clinic (a place where subsequently spent many hours) where we proceeded to wait for 3 and 1/2 hours. we finally were seen and they took off the gauze around her face. Looking at a photo is one thing, seeing it in tea life is a different thing. The only thing I could compare it to is Two Face in The Dark Knight and that is without CGI. They started to clean her wound with hydrogen peroxide and iodine. It looked incredibly painful and I went to her to comfort her. I held her hand and ended up having to hold her down and put her head in a vicelike grip so the doctor could finish. There was one point where she threw her head up and there was this milky eye looking frantically around and I wondered what sort of story I had stepped into. Sarah wouldn't stay in the room and whenever she looked at Harriet she would make a noise of disgust and look away.
How do you take care of someone who has already given up? How do you give someone the will to live? You can't and all you feel for your efforts if you try are disappointment. What was within my power was to force her to do the basics. Force food into her, make her at least stand, clean her and make sure she has clean clothes and take her to all the different places she needed to go. Treat her like a human being, which I am sure she started to feel like less than.
Her sister was possibly the worst person one could have gotten to stay with her because she had zero empathy and zero desire to do more than the absolute necessity. She laughed when I would comfort Harriet and when I took careful means to bathe her, scrub her body clean and then dry it and put on skin doctor and wash her hair. Like stupid me for going to all that effort.  She would never force her to do anything, but then she would show Harriet just how irritated she was that she had to do things for her. I would try and communicate with both her and Harriet and when I asked Sarah to translate she would just laugh at me. There were so many times I just wanted to slap her in the face. I felt frustrated that I go out of my way to help both of them and Sarah laughs at me and Harriet makes me feel like I am torturing her. But whenever I would get frustrated with Harriet, I would remember the state she was in and I would think about how acidic I would feel in the same situation.
There was so much done wrong in this case. When she first found this pimple on her face, they biopsied it at the same hospital we were at (Mulago) and they told her it was tuberculosis and sent her home. She took the treatment, it didn't get better…it got significantly worse and she did nothing about it. I can't understand that, but it happens all the time out here in Africa. Even when she returned to the hospital, she didn't get seen for 3 days. It just seems like there are certain people that no one wants to deal with, because the fight is long and arduous and requires much of you. But Whisper took that fight on.
For the first 4 days that I was there, it was constant running around and constant asking questions. The doctors were not on the same page and Harriet and Sarah knew nothing. So I took it upon myself to find answers. I ran to get blood cultures and fungal cultures and find biopsy results and to get wheelchairs and to get food and certain drinks that Harriet wanted. Because once she knew I wouldn't let her do anything else until she had eaten, she started to eat and drink again. We got preliminary results for both fungal and bacterial cultures and they didn't say very much that was new. But then we got the biopsy results and the diagnosis said rhabdomyosarcoma, an invasive, infectious form of cancer. i remember telling the sister and her kind of scoffing. Getting her to tell me if she had told Harriet was like trying to get US nuclear codes. 

I think somewhere inside Harriet knew the news was not good, with half of her face gone; it couldn't have been good. But it really took whatever fight she had and drained it. That night she just kept saying she wanted to go home to die. she refused to eat what i brought her, actually would not open her mouth, even when I tried to pry it open. It is amazing the strength that people find to fight you, even when all their strength is gone. I knew we couldn't give up, because if we did in that moment, it would be telling her something. Like it was okay to not fight. In the end the women of the ward overpowered me and Harriet drank broth that night and that was all. I felt broken. I had wanted to cry at many times up to this point, but I felt something break inside me. I went out of the ward and tried to call my mom. I couldn't get a hold of her, so I tried my dear friend Renita Hamm. When she answered, all I could do was sob. I couldn't even really get the words out that I wanted to say. It hurt so much that I was fighting for Harriet so hard, and she just wanted to give up. I could understand it, but the dam was broken and i could not stop the flood of tears that followed. She spoke some of the kindest words into me and it was an important moment for me, because it gave me the strength to go back and continue caring for the woman who wanted to die. I went back and Harriet didn't want to bath, well I forced her to, trying to explain in our broken communication that no matter what she felt, I wasn't giving up on her and she needed to be clean. 

Throughout this experience I felt like Harriet hated me. I felt like the bad cop. So it was amazing to me when Mary (one of the first true friends I have made in Africa) told me that Harriet just loves me so much. And the day we went to radio therapy and the doctor told me that her cancer was inoperable and uncureable, I sat on Harriet's bed with her and she stroked my arms and pointed out all my many mosquito bites and motioned to her mosquito net,

Sidenote: When I arrived at the hospital there was no mosquito net hanging for Harriet. I asked Sarah about it and she said she didn't have one. I went looking for clothes in their bag days later and stuffed inside at the bottom was a mosquito net. This woman drove me crazy. I gave her money to buy food for her and Harriet and she said the change was "stolen" from her. Such a lie. She stole Dentyne fire gum from me…anyone who knows me, knows how important my gum (sent from Canada) is to me. And when I gave her money again, she tried to hide the change from me…when I had seen her get change moments before. She had no shame.
Anyways Harriet motioned to her net and was inferring I should get one. We developed this sort of shorthand, which really amazed me looking back on it, but at the time all you are concerned about it whether or not she really understands what you are saying. But the fact that she was caring for me, even in the midst of everything that was going on really took my breath away.
Once we got the confirmed diagnosis and the consult from the radiologist, we started going up to the Cancer Institute. Let me explain, this place was probably about a mile from the hospital, along this walkway…mostly uphill. For 3 days I pushed Harriet along this walkway, singing musical songs to her (and myself really. to keep motivated) and we went for more tests. But we would always have to come back to Mulago because they did not have a bed up there for Harriet. The nurse would say, "well she can sleep on the floor". Yeah a woman with barely enough energy to stand, who complains when she has to sit for too long, she is going to sleep on the concrete floor. So ridiculous.
At the end of the day, Harriet moved into the Cancer Institute, where she is now staying with her mother. I should mention her mother came about one week into my stay and was a huge improvement on Sarah. Much more helpful and willing to learn about the type of care that Harriet needed. Harriet is willing to at least listen to the doctors, who are wanting to try a combination of chemotherapy and radio therapy to at least try and slow down the progression of the cancer, giving her more time. More time to live.