Cancer, the third most common disease, is associated with distress — physical, financial, psychological and social. Every year the number of cancer patients rises in India. Unfortunately, doctors do not have enough time to attend to patients’ fears and the family members are too shocked to help. That is where emotional support groups like the Sahayta Cancer Sahyog step in, says Reenu Narula

Hum honge kamyab...

Cancer, a global health problem, spells doom and despair. This third most common disease is associated with distress — physical, financial, psychological and social. More people die of cancer than AIDS, homicide and accidents in America alone. Every year the number of cancer patients rises in India. Though considered as the end of the road by many, yet, for cancer patients, knowledge and support can mean the power to understand the specific disease and deal with it in the best way possible. It also means learning how to deal with its devastating emotional, physical and financial effects on themselves as patients, and their families. It is imperative for people to realise that cancer can be cured if detected in the early stages or at least effectively controlled to keep the patient free from disease and enable him to lead a near normal life. Even in advanced stages patients can be relieved of their distressing symptoms and effective pain relief is possible. However, fear and ignorance are the biggest evils. What is needed is appropriate counselling to cope with this psychological upheaval.

Unfortunately, doctors do not have enough time to attend to the patients’ individual fears; the family members are too shocked to help; and society is far from being sensitive. That is where emotional support groups like Sahayta Cancer Sahyog step in. A Chandigarh-based (Sector 34) charitable welfare society, Sahayta is the first cancer support group in the region.

"The inspiration behind the start of the society was when my sister was diagnosed for blood cancer two years ago. I was totally shattered. I turned to cancer societies like V-care, Mumbai, and Cancer Sahyog, New Delhi, for emotional support and knowledge about the disease. The necessity and the utility of such a support group motivated me to start this society in Chandigarh," says Neelu Tuli, president of the society. Tuli and Dr Swatantar Kapoor and a handful of enthusiasts formally started the society in January, 1997. "The volunteers do not have any formal training but have passively or actively suffered from the consequences of cancer. Hence, they are in a better position to be sympathetic. However, the volunteers are required to read a training manual and are constantly reading up on the disease."

"The agenda of the Cancer Sahyog is to ensure that help is given to cancer patients to help them recover and lead normal, meaningful lives. In fact, life after cancer can be meaningful and useful. This is the message Sahayta wants to spread," stresses Tuli. Sahyog aims to provide emotional support and a better understanding of the physical and social aspects of cancer. Sahayta also facilitates communication between patients and doctors and other health professionals. "We also provide general information and practical guidance about diagnostic treatment and rehabilitation services available in and around Chandigarh and act as a forum for sharing positive experiences, strengths and hope," says Tuli.

Today, Sahayta Cancer Sahyog is helping a number of cancer patients being treated at the PGI. "As the doctors and nurses do not always have time to sit and talk to each individual, despite the inclination, they refer the patients to us. We work under the guidance of Dr S.K. Sharma, Head of Radiotherapy Department, and other doctors from the PGI," says Tuli. Sahayta volunteers visit the Radiotherapy Department, PGI, on alternate days. "Our main agenda is to instantly help the ignorant patients, understand the disease, the basic do’s and don’ts, guide them with the nutrition pattern, provide emotional support and, moreover, counsel their family to help them cope. We adopt some needy patients and sponsor their expensive medical treatment. Imagine the agony of a mother, who knows her child can be saved but has no funds to do so," she says. "These patients usually come from far-flung villages and have no or very little money. As most of them have no knowledge of the disease and its side-effects, they need constant assurance and understanding of their fear, anger and helplessness. Unfortunately, some of them leave the hospital soon after they start feeling better or do not return for the follow-up checks. Our endeavour is to ensure that these and all other patients receive the entire treatment and survive this dreaded disease," says Sheena Tuli, a volunteer and daughter-in-law of Neelu Tuli. "For those who are terminally ill, we provide for their painkillers, etc."

Sahayta has sponsored 20 patients, out of which five or six have completed their treatment and are leading normal lives. Tuli says: "Full treatment of one patient can cost as much as Rs 25,000-30,000. We totally depend on the help we get from donors. All the funds go towards helping the needy patients or publishing material for the society and cancer awareness."

To stress the need for patients not to give up hope and realise the importance of positive thinking, Sahayta joined the worldwide celebration of the Cancer Survivors’ Day on February 14. "The sole aim of the function was to spread the message of life after cancer, that is meaningful.