IT’S difficult to accept that one is suffering from a terminal disease," she says as the wind blows in from the Shivaliks through her garden, lifting the hair off her pale face. The pallor of her face is discouraging, but there’s an aura of calm about her. Her eyes are the windows to her soul — the soul of the steel-willed ‘Lady of Hope’.
How does one handle life that is slowly ebbing away? How does one come to terms with the end of life?
The woman sitting before me and speaking so matter of factly has done this and more. Since 1997, Neelu Tuli has been the public face and founding Director of the Sahayta Cancer Sahyog, a non-profit organisation, working for the aid, assistance and rehabilitation of cancer patients.
Neelu’s first acquaintance with cancer was when her sister was diagnosed with the disease. Her involvement deepened as she supported her sister through her treatment and the aftercare. It was then that she realised the lack of awareness about cancer and the significance of support groups. That was the beginning of Sahayta. Today nine years on, Sahayta volunteers are a reassuring presence for cancer survivors and patients in Chandigarh.
"Cheer up, you will be fine," everyone says with a genuine feeling to cancer patients but the latter are aware that this is a hollow assurance. What they really need is silence and someone who can listen to them. And that is why support groups like Sahayta are such an important presence in palliative and end-of-life care. There’s a wonderful bond between survivors and support group workers. Just being able to share with someone the agony and pain of chemotherapy, losing one’s crowning glory and finding tips on getting the right wigs, wonderdrugs, mastectomy bras, walkers and braces can be tremendously soothing.
Supports groups strive to make survivors determined not to lose today worrying about tomorrow. As one survivor puts it in Sahayta’s July newsletter, "Life is a mystery to be lived, not a problem to be solved".
Survivors get together to celebrate each precious month of life at a monthly luncheon meeting. Interacting with these bright, gifted, talented and courageous ladies, gentlemen and children is a lesson for lesser mortals: each one’s story is an awe-inspiring lesson in coping with adversity.
From many a forum, Neelu had articulated, "There is life after cancer and it is meaningful." Even as she worked tirelessly to promote greater awareness and early detection of the disease which, she believes, is the key to survival, the diagnosis in her own case was however too late. The cancer had already metastasised. She’s gone through several phases, fluctuating from hope to resignation and finally the acceptance of God’s will.
Chemotherapy, which she could barely endure; ‘talking’, yes talking to her drugs to cure her as Anup Kumar writes in his book The Joy of Cancer; ayurveda; and even a faith healer — she’s tried it all, egged on by family and friends. But she is calm now when she says, "I have seen so many go, but also so many fight and survive."
Neelu has now refused further chemotherapy. "Let it be used for those who have a chance," she says. She is grateful that doctors treated her with love —a treatment stronger than medication. Even today, prayers of survivors, patients, friends and family are buoying her through each day of pain.
She talks of areas which have yet to be visited such as rights of cancer patients, health insurance, disability benefits, and jobs for the afflicted. Sahayta has many milestones to its credit. Neelu has also been a founder member of Cancer Care India and a member of International Confederation of Childhood Cancer Parent Organisation (ICCCPO).
International Childhood Cancer Day is held on February 15 by Sahayta. It lays special focus on the Advanced Paediatric Centre and pediatric oncology in the PGI. Paintings and toys dot the children’s ward. The kids themselves demand "empathy not sympathy". Sahayta’s stalls and collection cases are ubiquitous in retail outlets and schools throughout Chandigarh. A Sahayta card or stationary means medicine and comfort for a cancer patient. This goes a long way in fulfilling Sahayta’s mission that no one should go untreated for want of funds.
Neelu is thankful for her family’s loving support, which has helped her determined fight against cancer. Each day after a painful night, she awakens with a fresh resolve to get through her list of things to do for Sahayta. "That’s the way I’d like to go", she says, "…working for Sahayta."
Here’s hoping that all our prayers will give her strength to go on and on.
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