Chronic Care in Rwanda: A Guest Post
Jenn hasn’t had much time for blogging lately, but she sent me an email yesterday that I asked her permission to share with you, because… well, because it didn’t seem right that I should be the only one to read it. I know for most of us the reality of the world’s suffering is half a world away. It’s like that for me most of the time, at least. But some days it is as far away as my best friend. Which is to say, thousands of miles as the crow flies; as the heart aches, only the length of a sigh.
We started chronic care clinic in Rwinkwavu three months ago, which has opened doors into the lives of patients I see often; I have met their families, seen them through pregnancies and deliveries, been with them healthy and laughing and then on oxygen, lying still in hospital beds. Soon I will see a few of them through surgery and their return to a somewhat functional life. I know some of them will die because we cannot get them needed care soon enough.
In Mulindi chronic care has transformed itself. I do not take care of chronic diseases. I take care of people. I walk into the women’s ward and Marie is doubled over with her chin tucked in and hands to belly. She is 46 years old and she has advanced cervical cancer. She is going to die. I walk over to her bed and she lifts up her head. A smile comes to her lips and she says “Tumakunde”—my Rwandan name that all of the patients have adopted. She takes my hand to her cheek. She is warm and soon my hand is wet with her tears.
I met Marie about a month ago when one of the accompagnateurs brought her to the health center. At the time she was febrile and had significant respiratory distress compounded with the unbearable abdominal pain from her growing pelvic mass. I didn’t know if she was going to make it through the day, but I checked in on her every few hours. With some antibiotics and fluids she did fine although her pain was barely relieved. Since then Marie has come to see me on several occasions, in the form of vaginal bleeding requiring transfusion, malaria, and more commonly, unbearable pain. The last time she was hospitalized I went to her room to say goodbye as I was heading out for the weekend but was stopped by the site of six women kneeling around her bed praying.
We sent Marie to Kigali but she was sent back to us for palliative care: there was no option for surgery or radiation in the country. If she was a little younger and her cancer was a little less advanced maybe we would have more options, we were told. Instead, her palliative care regimen consisted of a 7 day course of Tylenol and doxycycline. Tylenol to treat end-stage cancer pain. What the fuck am I doing, I asked myself as I wrote her a prescription for a month’s supply.
Marie has her moments and she sometimes stops by the health center when she is feeling well, to say hello. Her accompagnateur friend has become one of my secret allies who always gives me a hug when she sees me. I haven’t really done much for Marie, or Dancilla the other young women with cervical cancer who presented one week after Marie’s first presentation. She is only 32 years old and the same day of receiving her diagnosis of advanced-staged cancer she learned that she was HIV positive. We did a vaginal exam on her when she presented with unstoppable vaginal bleeding. We opened her legs and saw a fungating mass emanating from her vagina. I closed her legs and started to cry.
April 6th, 2007 at 1:49 am
Jenn, to you and all the others given the previledge to care for those in need, I salute you and I cry with you.
April 10th, 2007 at 4:29 am
Thank you for sharing this with us, Meera. The pain of most of the world is loud and terrible. Even if we don’t all have the skills and the courage of Tumakunde, we all have to remember that are living in a priviledged ’slice’ of this planet and that we can all live with a lot less than what we have.. and that our wishes and desires should be addressed to somebody or somewhere out of our personal space.
Grazie mille