Fieldset
3rd month of treatment

White Orchid shares her experiences of treatment for drug-resistant tuberculosis in Belarus

- Hi. How long have you been here? – I started. 
- A year and two months.
I realised it’s possible to survive the treatment.
- If you compare the start and the fourteenth month – did it get better with tolerating the drugs?
- Yes, about 50%.
I felt relieved  – I hoped to hear it got better at least by 30%. 
Let me jump ahead and say: at the 14th month my condition improved by 92%.
 
The help of those around the patients and psychological support is essential forthem, especially at the initial stage of the treatment. Most people develop depression. It's impossible to eat and to sleep properly, you’re belching all the time, there’s a queue for the toilet, the bathroom is closed for renovation, nervous system is strained to the limit. 
 

I had an impression I was inside The Master and Margarita, a novel by Mikhail Bulgakov which at one time was marked as "Top secret". Many people lose hearing because of these medicines. For me it was the opposite – my hearing became very sensitive: I could hear almost every word spoken in the neighbouring wards, in the kitchen, in the corridor, especially at nighttime. All the sounds interfered with me as if a TV was at full volume. In the morning I could hear half-empty pans rattling, somebody laughing ironically in the corridor, somebody arguing nervously on the phone, nurses shouting: ‘pills time’, ‘meal time’, ‘come get on a drip’, ‘to ENT doctor’: 15 recorders playing simultaneously on different waves. Before dawn a strange lady with a white tray woke us up twice and gave each of us a magical injection that made pain spread all over the body. And at daytime fine brave heroes came into the ward, so that I wanted to hand them each a broom to fly out of the window where yesterday’s haze was still hanging. It seemed Satan’s ball lasted forever.
My main task for survival was to find, identify, determine foodstuffs that would suit me specifically. And the point is not that you have no appetite, but that at this stage of treatment if the wrong food is eaten the nausea increases three times and as a result together with other side effects it drags your overall condition down. As the patient feels sick all the time his capacity to assess is stupefied. The result is learned by whether the food is thrown up or not. You don’t think what you’re going to eat, but just hope that - no matter what - some calories stay in the body. The patients who were at later stages of treatment shared their experience. So many diverse options! I tried all of them. It didn’t work. My body itself was suggesting what food I should eat.
 
I regret I didn’t have a video camera: I could have collected interesting material and then put it on youtube and gained some money. Money as you’ll learn later is a very relevant topic for a patient. The filming of course would not include other people’s faces. 
 
Some patients enjoyed living here. They say in other TB hospitals the conditions are much worse. I won’t share their horrors or joys because it’s different for different people. Perhaps you’d like to share your own impressions in the comments to this post. It would be very interesting to read.
 

Musical accompaniment for the page

 
I was struggling my way to the toilet. I didn’t realise it was me specifically who tolerated the treatment so poorly. I thought everybody was feeling bad, but somehow managed to make jokes and stand on their feet. And suddenly somebody said: "Stop it, I wouldn’t have tolerated it that far." Several people repeated his words, perhaps they’d seen me before. Somebody recommended that I asked the doctor to prescribe me different medicines, of better quality, provided by the Global Fund as part of their support to StopTB programme. (In January 2017 I will learn that in December 2016 the Global Fund stopped sponsoring Belarus). The doctors thought I was experiencing psychological denial of the treatment. And what it was in fact you’ll learn in the next post