When you're dealing with cancer, a daily dose of inspiration may make a big difference in your outlook on life.
Along the busy streets of Sixmile, Guwahati lie one of the most wonderful homes of the city. Deepsikha Foundation, which otherwise looks like just another city building, is the home to several infants, toddlers and children who are fighting the dreadful disease - cancer.
A cancer diagnosis always comes as a shock. It often breaks the family members of the afflicted emotionally, psychologically and financially. For most of the middle and lower middle class families, the disease ushers in a devastating phase of life. Faced with such situations, the affected families need the support of people who can provide sound advice, counselling, monetary assistance and genuine help. For most children with cancer, their life changes dramatically. Going through tests, doctors’ appointments and treatment become part of their daily life. They have a lot to cope up with and it is important they have people they can trust close by who make them feel loved at all times. This is exactly what the team at Deepsikha Foundation does.
The members at Deepsikha Foundation envision taking cancer awareness and care to the remotest corner of every Indian village and also establish an equitable, pain control and palliative care network throughout the country. They dream of creating a cancer-free world.
Devasish Sharma, an alumnus of Ramjas College, Delhi University joined the Assam Civil Services in 1992, as the Circle Officer of Sarbhog. In 2003, he was posted as the Deputy Resident Commissioner of Assam Bhawan in Mumbai. And that opened floodgates of a new dream and vision of building a better society.
When Sharma was posted in Mumbai, the Assam Bhawan was in a shambles; the building was virtually locked with only a junior engineer named Trinayan Handique living in it. The building was an eyesore for the Assamese people living in Mumbai. It was spread across an area of 25,000 sq ft, but was dilapidated.
Today, while the name Assam Bhawan brings to mind bureaucrats, ministers and red lights, one would be surprised to know that Assam Bhawan, Mumbai is a home entirely dedicated to cancer patients.
“Everything is available in Mumbai, except a roof over your head which is very expensive. People who come to Mumbai for treatment are in a position to get treated only for a few months after which, they are financially exhausted, and they leave their treatment to go back home and die,” said Sharma. And that was the triggering point for him.
He then wrote a 100-page report to the state government citing all the problems with a written petition from the cancer patients at Tata Memorial Hospital to help with their accommodation. The government heard their plea, and in June 2004, Assam Bhawan in Mumbai opened its doors for cancer patients. Word about this facility spread like wildfire and within two months, the entire Assam Bhawan was occupied by cancer patients.
Sharma soon embarked on a journey to spread awareness about cancer and its detection across several places in Assam. His journey started in Barpeta and moved to places like Mangaldoi, Jorhat, Morigaon and Dibrugarh. All of this was made possible with the help of the respective district administrations and this is how Deepsikha was born.
Deepsikha Foundation is a home where currently 15 children who are battling cancer reside. The age group of these inmates vary from birth to 17 years. From the day a person is diagnosed with cancer, the world for him falls apart. From finding a proper place of treatment to helping the patient and the family members tide over different circumstances, Deepsikha Foundation offers a holistic approach of care. "We at this cancer care home, provide various kinds of assistance to these people. Getting the right medical support, a place to stay, hygienic food, counselling during the term of treatment to help the patient heal emotionally, we make sure to provide the right assistance," said Devasish Sharma. The idea is to spread awareness on cancer and revolutionize cancer care thereby adding meaning to human life.
Sharma and his team believed that to eradicate the disease, proper screening and public awareness was of utmost importance. But cancer is a very gloomy subject and people would not understand in medical terms. So the team translated cancer awareness materials issued by the Tata Memorial Hospital into Assamese, developed these into songs and went to the streets.
Deepsikha Foundation can accommodate 100 inmates at a time (patients and family members). The team provides the patients with transportation to the hospital. The building has a classroom, where people can volunteer to teach the children. An activity room has been created to ensure that these children cope up with the environment and not break down emotionally.
Children and cancer: a harsh battle
Visiting the home will surely not give anyone a happy feeling. To see infants as young as just 4 months suffering from cancer is bound to hit you hard. 80% of the children staying in the home are suffering from leukaemia (blood cancer). Most of the children don’t know what they are suffering from. “Children do not understand cancer. They have no idea about the disease. They are happy that they do not have to go to school or study. But for parents, the news comes as a shock. A lot of counselling needs to be done for the parents,” said Dr Mrinmoyee Baruah, Secretary, Deepsikha Foundation.
4-year-old Sonia is battling blood cancer. She is joyful, lovely, unaware of the harsh realities of the world and ignorant of her condition. She is a living epitome of hope and courage. She smiles at all and spreads laughter all around. “We, as parents, have to be very patient. We should not end trusting in God, it is all in His hands,” said Sonia’s mother.
It is heartbreaking to see the parents hoping against hope every day. “This is very tough, but what can we do when it is God’s wish? Here we have seen so many people living the same tough life. Together, we try to give hope to each other,” said the mother of another 15 year old patient.
Deepsikha organises screening camps in different districts of Assam. The people who are detected in the pre-cancerous stage are given appropriate advice and support. The organisation has a fleet of ambulance services in Guwahati and in Mumbai to transport patients from hospitals and to meet any emergency. They receive patients from railway stations and airports and provide them with the logistic support in the hospitals.
According to Sharma, the understanding of the people of Assam towards the disease is very minimal even at present. They are often clueless what to do or whom to turn to. “People are ignorant. And by the time they visit the doctor, the disease spreads to a large extent. It is very important for us to be aware of our body. The women should, from time to time, touch their breasts and check if there is any form of lumps growing. We at Deepsikha aim to nip the disease from the roots,” he added.
To quote CC Scott, “The human spirit is stronger than anything that can happen to it.”