Sohail Ansari, an 18 year
old boy from Samastipur district in Bihar was admitted to our Centre on 23 Nov
2013 with bone cancer in the left side of his jaw. The tumour had enlarged in
both directions and was rotting inside his mouth, emitting a mephitic and
nauseating odour. This, compounded with his disfigured face, had led to his
social ostracization. He was accompanied by his parents – both were looking
bewildered and exhausted by their unending ordeal of witnessing their child in agony.
The son of a village
tailor, Sohail was the eldest child with 5 siblings. He was an intelligent
school going boy when he noticed a painful swelling on the left side of his jaw,
about six months ago. Visiting the local dentist, quacks and doctors provided
relief neither in the swelling nor in the unrelenting pain. It was only when
the growth began to proliferate inside that an astute doctor in a Patna
Hospital suspected something more ominous and advised the family to take Sohail
to New Delhi.
With their limited
resources, they landed up at AIIMS and finally got registered at IRCH after
blundering about in various other departments. Since the fairly rapidly growing
tumour compromised his breathing and led to progressive difficulty in
swallowing, a naso-gastric feeding tube and a tracheostomy was done at the ENT
department.
However, Sohail had already
lost a lot of weight and his frail condition would not tolerate the deleterious
effects of chemotherapy. It was at this point that he was contacted by a member
of CanKids and advised to get admitted to our DC & TH for management of his
pain and other symptoms.
From the Pain Clinic he had
been prescribed a mere 5 mg of morphine every four hours – but this was
inadequate to control his pain. We titrated his dose steadily upwards and gave
him adjuvants and cleaned and dressed his wounds. His parents were taught the
correct techniques of tube-feeding and suctioning the secretions from the
tracheostomy opening. His cough cleared up within a couple of days, he was pain
free and the putrefying smell that had permeated the wards gradually subsided.
Every morning he did a
Namaste and attempted a lopsided grin to show that he was comfortable. For any
problem he would write short notes in a copy – he had a remarkably neat
handwriting. Gradually the care-worn expression of the mother faded away and
the father too started interacting with other members of the ward. During our
Christmas celebrations the father was very active in putting up the decorations
and Sohail sat through the proceedings – although he could not eat anything.
One sad day the parents
were informed that no further treatment was possible. All three were deeply
traumatized and went into a period of depression. We empathized with them – in
fact, Sohail needed antidepressants before he became less withdrawn. As a last
measure, the parents started looking around for alternate treatments. We did
not actively dissuade them, but advised them of the various pros and cons of
such approaches – the physical discomfort of going to faith healers and the
financial motives of all charlatans. Eventually, the futility of these ventures
dawned on them and they then did not waste their energy or resources any
more.
Sohail was with us from 23
Nov 2012 to 26 February 2013. His family back home were very keen to see him.
Much against Sohail’s wishes, his parents booked rail passage and went back to
Bihar. We provided them with a suction machine, pillows and blanket, ripple
mattress and back rest and travelling expenses. He was also given milk, yoghurt
and sattoo during his stay.
When I went to him to wish
him farewell, Sohail looked up and gave me such a soulful look that moved me to
tears. That look was akin to one Autua gives Adam Ewing in the film “Cloud
Atlas”. It was look that spanned the spatial and temporal gap between the two
of us. He looked at me maybe just for an instant but it seemed to last an
eternity.
I kept in touch with the family over the phone advising changes in his medicine regimen. Sohail was actually quite happy to be back amidst his family.
One evening I got a call
from the father that Sohail had breathed his last earlier that day. He had
walked around his home, beckoned everyone to come near him and peacefully
passed away.
