Today is Holi, the festival of colours, the victory of good over evil. The streets resound with the beating of drums, people dancing in abandon with colours adorning their faces. I am on my way to work, taking in the sights and sounds of celebration, the riot of colours on the street, with a smile on my lips, a song in my heart.
Humming to myself I enter my workplace…Rang Barse…
I see Saurabh sitting in his bed…busy texting and chatting with his friends on WhatsApp. He looks up as I enter and smiles, we wish each other “Happy Holi”. Saurabh is 16 years old and from Kolkatta. He has blood cancer that cannot be treated. He is with us for a non-healing wound in his thigh. His father looks up and smiles. I can sense the distress behind that smile. The father follows me to my cabin. We discuss about the disease and the further plans once he goes back home. He talks about his 10-year-old daughter, his wife and his elderly frail mother. Eyes brimming with tears he rues, “ Mera beta ab to do chaar din ka mehmaan hai (My son’s days are numbered). What do I do about those left behind?” He had sold his land and house for Saurabh’s treatment. Now penniless, with no job, he worries about the fate of his family. He is crying…I am sitting silently across him…his pain resonates within me too. After few minutes he regains his composure, “Who has to go will go, I need to live for those left behind.” Smiling through the tears he thanks me and moves on.
In the next bed lies Shaurya from Mumbai. An 8-year-old with thalamic glioma, a cancerous growth in the brain. For the last 20 days this has grown so much that now he is comatose. A tube goes into his stomach through the nose to feed him, another tube, a urinary catheter, collects his urine. His distraught parents are at his side, waiting for him to respond. As I approach his mother looks up at me hopefully and says, “He is moving his limbs a bit.” I know she is expecting me to say he is getting better. I sit across them on the bed, clarifying that this movement is not a sign of recovery. Again there is silence…the distress palpable, I can feel it. I sit with them for some time discussing our plans of sending him home. They want him to die at home. His father talks about Shaurya a few months before diagnosis, his likes and his passions. He opens his wallet and shows me the picture of a healthy Shaurya, a chubby boy with a smile lighting up his face. He is crying, his wife sobbing, my eyes are brimming with tears. I find dealing with children extremely tough.
In the next room is 55-year-old Shobha. She has cancer of the gall bladder that has spread to her liver and her intestines. Her intestine is blocked (obstructed) because of the cancer. She has been admitted for intense pain, which is currently under control with medications. She has a tube running from her nose into her stomach, what we call a nasogastric tube, which drains contents from her stomach. She is comfortable today, smiling as I enter. She applies a tika on my forehead for Holi and wishes me. Her husband and son are by her side. It is their wedding anniversary today. Her husband is with the armed forces. A major part of their marital life had been spent apart, he serving the country, while she looked after the home and children. They were hoping to spend time together after his retirement in three months time…and had even planned a vacation. He is dreading going back to an empty house. As I wish them I can sense the despair writ large on their faces.
Amrita is a 48-year-old with breast cancer that has spread to her liver, lungs, bones and brain. She was brought with convulsions and agitation. Her seizures under control, she has what we call “terminal delirium”. When she is awake she is disoriented, aggressive, not recognising her family. We have sedated her to control her symptoms. He son and daughter sit by her side, waiting for an end to her suffering.
Then, there is Hussain and 30-year-old from rural Maharashtra. As I enter his room a sickening odour invades our senses. Hussain has oral cancer. A huge wound has eaten away half his cheek and neck. This wound is filled with maggots. His wife has left him, his siblings don’t want him, and his elderly mother is unable to manage on her own. He has no money for medicines or food. He lies helplessly waiting for the health professionals to solve his medical problems and for the social worker to find him a place where he will be taken care of.
These are some of the patients I see every day. The faces change, the diseases are different, but their suffering universal…that of patients and families coping with the primeval fear of death and disease. I witness this distress of the body and the soul every day. I am a palliative care physician. For those of you not familiar with the term palliative care, it is that branch of medicine that looks after patients with terminal illnesses. Palliative medicine helps the patients with terminal illness to live as well, as comfortably as possible, right until the end of their lives and to die with dignity when the time comes. It is called comfort care, aiming to reduce the suffering of not only the patients but also their families.
As I enter my workplace the colours of Holi look faded, the sounds of laughter muted… It is a world of contrasts…Dance of Bliss outside, Dance of Destruction inside!
Often friends and family alike ask me how I work in this “depressing” “difficult” “tough” environment. “You must be very strong” is what I often hear…Colleagues in other branches of medicine assume I deal with this by being “objective” or that “one gets used to it.”
These questions set me thinking…Indeed how do I work in this environment? How does any one work day in and day out in this environment and not be affected by the suffering of others? How do we, those working in palliative care, cope?
“When we stand on the low rungs of the ladder of sorrow we cry.
When we come to the middle we are silent
But when we climb to the top of the ladder of sorrow, we convert the sadness into a song.” (Ancient Hebrew Poem)
The next part on how I find the balance will follow shortly…