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. 

Harriet Kawala has a cancer

Harriet is only 25 years old and her condition was suggestive of Rhabdomyosarcoma where histology shows an ulcerated hyper-chromatic and pleomorphic cell lesion. 

Since doctors discovered it is cancer and the type of cancer Necrotic ulcer on the right part of the face, cancer of the right part of the face (, this was a clinic findings from Makere University Pathology Core Reference Laboratory.

Doctors say they are going to exercise burning. This should cure the cancer and then they will perform a plastic surgery - they are going to cut pieces of skin from other parts of her body (tight or bum) and then apply on her face.

However now Harriet can smile a little bit after encouraging words from Emmanuel Mugabi when he told he if she knew he loved her and he was her friend. she was very happy when she saw him with her mother, she greeted us and streched her hands to shake with us. She could speak but in the low voice.

When Emmanuel told me that she smiled, it made me also smile, I asked him how did he do that and he replied "I told her I love her, I told her that she didn't know but I am her friend and I loved her, We had somehow intimate chat and she felt happy, all she needs is love and encouragement around her, then she will feel like "Life"

Emmanuel asked her how she felt and she replied she felt very weak, and she said she didn't know why, and he said "it is because of food".

Emmanuel is our outreach worker and he is incredible in talking to people and counselling them! I knew when he reached to her bed, she would feel better! 

However she sill have wounds inside, approximately  5cm big ulcer in her mouth and it makes it difficult for her to chew food, when she feels like eating. She feels needs fried eggs and taking chicken soap, banana and she loves people speaking to her nice and giving her hope. She likes when people smile at her and having a positive energy, as up to then nobody would enjoy being around her.

Sienna Howell - Whisper volunteer - has done much, cleaning her, giving her energy to eat and running around finances and doctors. Everyone appreciates her as she is helping others too.

Doctors said it is in an early stage - a very young cancer.

We are all very proud of Sienna, because conditions at the hospital are NOT easy - there is LOTS of suffer - the bathroom is pretty stinky and ever wet, the toilets are disasterous - there is lots of sickness and bad bacteria. 

I am also very proud of our small team because we fight so hard to help people and this is what gives the fuel to our lives and this is what Whisper is about!! I think our next motto should be "We fight with Whisper".

Veronika :-)

Harriet in the hospital

So it was Thursday the 25th of April when we decided to take Harriet to Mulag hospital which was recommended to us by various people as the best place where she can be helped thanks to the specialists this hospital has.

We came to pick her to her home, informed her sister and brother, who decided to come along.

We arrived to the emergency department, and been seen quite quickly by the team. They did an x-ray of her scalp and her chest, so they could determinate a TB infection.

After some time waiting, and Harriet being seen some white medical students and hospital seniors, they told us she will be taking to the emergency department and in the evening doctors would pick her and admit her to the appropriate department.

We left Sarah (Harriet’s sister) with 50.000 UGX (approximately £13.15) for food for the next few days) and went back to Jinja with their brother. In Jinja we agreed, that the brother will come back to Kampala the next day and bring necessary things for Harriet and Sarah stay at the hospital. I gave him another 30.000 UGX for the transport.

The next day – Friday, Sarah called Hashim in the afternoon that up to then they were not seen by anybody, and that Harrietis still left on the same bed without any medication, pain killers, her wound not cleaned and she was truly suffering. I got pretty concerned, as this was not what we were told at first. So  I contacted certain Dr. Manjit who works at International Hospital in Kampala and informed him about Harriet and that we need somebody who could start paying attention to her. I also called one of the  medical student called Peter who would assess Harriet at first. I previously asked him if he could keep an eye on Harriet and the care she should receive.

Peter told me the hospital is overloaded and I should not expect sudden care since Harriet was with it for a year now. I was pretty unhappy and started to worry.

Meanwhile Dr Manjit was contacting somebody working in Mulago Hospital asking to go and check on Harriet.

I am not really sure what response this got, because the next day on Saturday the 27^th of April, we received a phone call from Sarah saying that nobody has checked on them since we brought them. Harriet cried to Hashim on the phone that she wanted to go home saying “Please come and pick me from here”.  

I tried to be really unhappy and worried, I blamed myself that we allowed Harriet to be neglected like that, and actually stopped believing that Mulago Hospital is the right hospital for her.

We again contacted several people asking for advice. Hashim finally found out the name of the doctor who was on the duty, managed to speak to him. He asked for 170.000 UGX for several tests such is biopsy, cultural sensitivity, some smear test of her pus. This was Saturday and Harriet claimed that she had no money for food. We sent another 50.000 UGX to her as well as we gave her money for the tests.

On Monday afternoon we visited Harriet and Sarah at the hospital. Sarah showed us the various number of antibiotics she needed to buy for her and Harriet was taking. She ensured us that she has the money for the tests and that they should be done on that day.  Harriet said that she does not feel much pain anymore – thanks to the strong painkillers and they also said that doctors cut part of the dead flash on her face.

On Wednesday we visited Harriet again just to find out that that no tests were taken on her as Sarah has missed the slot yet she was informed.

We found out that Sarah actually took no interest in getting the request forms for the tests. So after speaking to the nurse, we filled the request forms and got Sarah to the lab where she needed to pay for the tests.

We also read from her file that CT scan was suggested of her face. They told us that the CT scan in the hospital is faulty, and we had to look for it in private hospitals. We got the request form and said we would come back the next day on Thursday. After finding out the costs of the private CT scan, I kindly asked public on Facebook if they were willing to contribute towards the costs which was actually 400.000 UGX – to my surprise, great number of people sent us the needed amount so we could return back to Kampala. (Each time we go to Kampala, we have to fill the car with petrol 30 l at £25.

We came back on Thursday and by then Harriet became very weak – Sarah claimed she did not want to eat anything. When we got to her bed, we did not find Sarah there – and I just realized that every time we came to her bed, Sarah was not around.

It was around 2pm and Sarah said that Harriet did not eat anything yet…

I prepared Harriet fresh carrot and beetroot juice and made her to drink quite a bit.

We got Harriet into our car and drove to look for a hospital where they could do a requested CT scan. I felt very bad for Harriet, as she was so unwell and weak and it took ages to find a free and working CT scan. It was already 5pm and Kampala International Hospital agreed to do the scan the same day at cost of 400.000 Shillings. They also requested 3D reconstruction of her scalp.

Due to our busy schedule, we said we would return on Monday to pick up the CT scan results.

For our reassurance, Hashim took telephone number of the neighbors to communicate to them as he heard that her sister was not caring for her much.

The next day Sarah called Hashim – as he keeps communicating to her daily – saying that Harriet does not want to eat and she feels very weak – and that her condition has worsen. He called the neighbors at the same time who said that Sarah does not care for Harriet and that they are the ones giving Harriet food.

After sending another 30.000 shillings to Sarah for food on Saturday (as she called us the whole day she didn’t have any money but people telling us that Sarah would not give her any food - Hashim went to see the situation on Sunday the 5^th of May.

On Monday morning we got our volunteer Sienna Howell, who has been volunteering with Whisper since October 2011, to stay with her at the hospital and taking proper care of her…

This was the best choice we could have made as some shocking information has been passed on to me and it made me incredibly upset of how people can really be!!!

I started to receive horrific messages from Sienna.

Sienna said: “We just got in for dressing change. She is shivering quite badly. She has my red sweater.” She said she wetted her bed and her sister was far and would not change her. She also said that Harriet was not yet bathed. She smelled so bad, as well as her hair.

We got for her a new basic, skin doctor (herbal jelly), new sheets, so Sienna took the initiative and bathed her, put on her clean clothes and she called me and said “Now she smells nicely”.

After sending me a photo of Harriet’s face during the cleaning, I was shocked to see that doctors removed her right eye lid.

Sienna said: “I feel like I don’t know what. But what she really needs is some encouragement, some push to start fighting. Her whole body is void of muscle mass. She is skin and bones”.

Then she continued: “Sarah has skin doctor and soap. It pis*** me off that Harriet is left in her condition and she won’t help her. Earlier Harriet actually said she wanted some juice. So Sarah poured some for her and left it on her bed. Harriet didn’t have the strength to pick it up and hold it and she just left her there and went to sit on another bed. So I went over and helped her drink. Incredible. And they all keep f**king laughing at me and talking about me. Idiots” Sienna was pretty frustrated. I spoke to Hashim about that and he said that he will communicate to the people he had number for and ask what was going on… He also told me when he arrived with Sienna Harriet told him in Vanacula “she beats me, she beats me”.

I think having Sienna is absolutely a life saver. It seems that even doctors are now giving proper attention to her and things are moving better than before.

Sienna told me that Harriet had a bit of chicken and some beetroot juice before she went to bed.

Today, Sienna called me in the morning that Harriet drank full cap of porridge with lots of sugar – which made me happy. She also said that a team of doctors went to see Harriet and tomorrow morning they will take her to the optometrists as they assume that her right eye is blind, because the infection has eaten part of it.

She also said they had to repeat the biopsy tests and blood tests, because they were taken to the wrong lab… we had to pay for those again..

Sienna said she doesn’t want o eat much, she forced her to eat banana and some water. So I suggested Sienna to be giving her porridge since she likes it, with some g-nut paste and raw egg and if this is the only thing she would eat, the best for her as this is the nutritional food we are giving to our malnourished children – and it always proves to be right.

So seems we are starting from the beginning again as we still don’t know what we are treating, but having Sienna around has made a difference and I will be updating soon on happenings.

At the mean time, Harriet needs lots of prayers. It seems that her own sister would neglect her because she didn’t like her and the money she would get from us saved or use for other things. People at the home said that Whisper helped a lot because nobody would dare to enter the room where Harriet was staying – so in short , her real sister would also neglect her, letting her to trash on the bed, being thirsty and hungry and making her feel invaluable. No wonder Harriet pleaded to go home as there is her mother who seemed to only care for her. I am also finding out that people without money cannot succeed in any hospital care and the personal just let them die as any medicine patients require for must be bought. Apart of the medicine we had to buy simple things like cotton, disinfectant or cannula.