If Shobhit Kaushal were alive today, in all probability, he would have been a well-known painter or a poet, or maybe both. At least, that is what people who knew him well enough seem to believe. Kaushal lost his battle to cancer in 2009. But he has been immortalised in the form of 'Ugam', a voluntary support group, formed by childhood cancer survivors from the After Completion of Therapy (ACT) clinic at Tata Memorial Hospital (TMH), Parel.
"He was the one who envisioned Ugam, two years ago, when he was undergoing treatment at TMH, but he couldn't live long enough to actually see his dream come true," said Dr Purna Kurkure, Convener, Ugam. Dr Kurkure's visit to St Jude's Children's Hospital in Memphis, US in the late 1980s motivated her to work for cancer survivors in India too.
"The concept of survivorship is well-known in the US. At St Jude's Children's Hospital in Memphis, they already had an ACT clinic and a survivor group in place. I wanted to replicate the model at TMH. Hence, I along with my team, started an ACT clinic at TMH in 1991. At ACT clinic, survivors come for checkups every year, after they are cured of cancer.
Together we can: Ugam, a voluntary support group formed by
childhood cancer survivors at Tata Memorial Hospital in Parel.
But we wanted to bring cancer survivors together on a common platform. This is when Ugam was formed." She added, "It is important to note that there are three stages of survivorship. First stage is living with cancer, which begins when the condition is detected. Second stage is living through cancer, when the patient undergoes treatment. The final stage is living beyond cancer. The aim of survivor groups, like Ugam, is to deal with the third stage of survivorship," said Kurkure, who is also Professor and Incharge of the Paediatric Oncology Division at the hospital.
Ugam, which was established in 2009 with 57 members, has more than 100 Mumbai based members today, who are 14 years and above. "For being a member of Ugam, one needs to be a survivor of childhood cancer. Cancer patients who have managed to stay cancer free for atleast two years, after they have completed therapy, are called survivors," said Kurkure.
Dr Vandana Dhamankar, senior research fellow, Department Paediatric Oncology, who also oversees activities of Ugam, said, "There are many members, but we have 20-25 active members. The response has not been great, but more and more people are getting enrolled."
Survivors: Ekta Pawar and her husband
The group meets once every month at the Indian Cancer Society, a Non Governmental Organization (NGO) at Bhoiwada. "In these meetings we discuss our next plan of action and what sort of activities we must organize to reach more and more cancer survivors," said Ekta Pawar, coordinator of Ugam, in a telephonic interview from Pune.
Pawar, who has been associated with the group since its inception recalls, "It was during a conference organized by the International Society of Paediatric Oncology (SIOP), in 2007 at National Centre for Performing Arts (NCPA) in Mumbai, when survivors registered with the ATC clinic of TMH, were invited for the event. Workshops and interactive sessions were held for five days.
We met childhood cancer survivors from all over the world and that is when we thought of having a Mumbai based childhood cancer survivor group. A few childhood cancer survivors got together and we started brainstorming. We had to get sufficient people to start the group. Finally on June 7, 2009 Ugam was officially registered under the Indian Cancer Society."
The aim of the group is to look at problems faced by survivors after they are cured of cancer. "After one has managed to battle the condition, there are various issues, like-societal acceptance, rehabilitation, etcetera, which need to be addressed," said Pawar. Two members of Ugam are now part of ACT clinic held every Tuesday at TMH. Members believe that Ugam is an extension of the ACT clinic. In ACT, a patient is given medical advice, whereas at Ugam survivors can share their personal problems pertaining to marriage, education and so on.
Support: Dr Purna Kurkure, Convener, Ugam
Said Neelima Dalvi, medical social worker at the ATC clinic in TMH, who also works with Ugam, "We felt that there should be a group which could be like a support system for survivors. Group members who could help each other out on marital issues, career decisions. Members of the group also counsel parents of those suffering from cancer. They also meet cancer patients undergoing treatment.
Listening to their stories, gives them strength. Survivors tell them that cancer is curable and one can have a normal life post treatment. Sometimes when a member seeks an admission at an organization or goes for a job interview, a reference from one of the doctors, informing the employer or the authority concerned, about the patient's condition can help them a lot."
One such cancer survivor is Shalaka Mane (28), associate coordinator of Ugam. Mane from Andheri (E) has defeated cancer twice. "At the age of seven, I was detected with acute lymphoblastic leukaemia (a form of blood cancer), but I was cured. When I was in Class XII, I was detected with malignant brain tumour. I received 30 radiation and a lot of chemotherapy and the tumour subsided. But, my right eye's orbital bone had started decaying.
The vision in my right eye was affected. So, I went through surgery. I lost vision in my right eye and now, my right eye is always wide open. I cannot blink. When I travel, I cover my right eye with plaster and wear black glasses. When finally I was cured of tumour, my mother was detected with cancer. My mother was like a pillar of support for me and I just didn't know what to do.
But we managed," said Mane, who has officially started working for Ugam as a coordinator from February 1, 2012. When asked about her future and marriage plans, Mane is quick to reply, "I don't think too much about the future. I am independent and eternally optimistic. I intend to inspire and do something through Ugam for cancer survivors," said Mane.
Anita Gupta (36) from Andheri (E), another member of Ugam, currently works for an NGO. Gupta shares, "I had retinoblastoma (eye cancer) when I was just three. I was being treated at Bombay Hospital, where I had to go through surgery where my right eye was removed. By then, the infection had spread to my left eye too. I was operated upon and I have 40 per cent vision in my left eye now." Gupta had to face a lot of hardship and discrimination at school.
"I wasn't treated well at school. My friends and teachers would call me blind. One of my teachers suggested that I was blind, therefore, I should drop out of school," said Gupta. All these years, Gupta didn't lose hope, but when her daughter too was detected with retinoblastoma, she was shattered. "I had locked myself up in the house for 15 days.
I refused to accept the fact that my daughter too had cancer. I got a call from the doctor, who had examined my daughter. He told me that I should immediately start treatment as she still had 100 per cent vision in her left eye. Only her right eye was affected. I came to TMH and my daughter had to go through surgery. Her right eye was surgically removed. It was during my baby's treatment at TMH when I heard of Ugam and decided to join the group. I wanted to share my story with others," said Gupta, her voice choked with emotion.
Sampada Sakre (48) is another cancer survivor. Sakre was in Class VIII, when she was detected with acute leukaemia. A member of Ugam, she counsels survivors on marriage issues. "Every relationship should be based on trust and honesty. My advice to survivors is -- Don't tell every Tom, Dick and Harry about your condition, but once somebody has approached you for marriage then they should be honest about it." Concurs Pawar, whose husband too is a cancer survivor.
"There are two women cancer survivors from Ugam who are happily married now. While counselling, we suggested that they should be very open about their condition. The two of them had registered with some matrimonial websites, where they stated that they were cancer survivors. My husband and I were also honest with each other."
While a few survivor groups have sprung up all over the city, a much-organized effort is required to highlight the issue of survivorship post cancer treatment. "Cancer survivors in India are not considered eligible for any kind of health or life insurance scheme. This is particularly hard for long term survivors, especially those who had childhood cancers. This needs attention," said Kurkure.
>> Ugam in association with JJ School of Arts will be organizing a 'Fun & Learn' workshop at Chowsey auditorium between 9 am and 1 pm, to observe World Cancer Day today. For further details, send a mail at firstname.lastname@example.org
>> Membership: If you are a childhood cancer survivor, you need to register yourself first at the ATC clinic at TMH. After proper medical examination, you can become a member of Ugam if you are cancer free. Non-cancer patients cannot become members, but can become friends with Ugam