Often, it is the aftermath that is more traumatic than the disease, say the experts. But there are always ways to foster hope and well being.
Ram was an active seven-year-old. Suddenly, in 2011, following a bout of fever and cough, he became listless and easily tired. A visit to the doctor showed his WBC count was way over normal. Leukaemia. His parents were shattered. “We were terrified. We were afraid for his life. And, there was no one to speak to. There was plenty of pity, but we wanted support,” recalls his father N. Arunan. After three difficult years, Ram, 10, is now back being his naughty best.
Arunan was one of the parents at the inauguration of the Paediatric Support Group at GKNM Hospital, on World Cancer Day (February 4). This is an initiative of Coimbatore Cancer Foundation (CCF), the hospital and Anns’ Club of Rotary Texcity.
“I wish we had such a group when Ram was undergoing treatment. It would have lightened our grief. Other than doctors, we had no one to share our issues with,” says Arunan.
Three-year-old Manju was brought to the hospital three months ago after severe wheezing. She was diagnosed with leukaemia, the most common form of cancer among children. Her mother Vinathi recalls the fear and hopelessness that she and her husband felt. “The first month was very bad. She wilted. But now, she’s regaining her energy,” she says. Vinathi says a support group helps parents cope with grief and acceptance.
Support groups are important for parents of children with cancer to know they are not alone, says Arunan. “You can learn from others’ experiences. On how to deal with tantrums and tears,” he says. He recalls how shattered Ram was when he saw his bald pate after chemo. “For a long time, we never showed him a mirror. On the 30th day, he saw himself and was inconsolable. We had a tough job convincing him his hair would grow back. Such a forum would have helped us,” he says.
According to Dr. T. Balaji, managing trustee of CCF, the hospital already has support groups for breast and cervical cancers, run by patients themselves. “But, there was nothing for parents of children with cancer. Such a diagnosis can shatter families. We wanted to show them that there is hope, that it is not the end of the road, that cancer is so much more curable now,” he says.
Which is why, during the inauguration, they got children who have beaten cancer to dance and play the keyboard. “So that, kids undergoing treatment can look at them as role models; so that they can see a future,” he says. There was a magic show too, to cheer them up.Provide information
The group will also empower parents with information. And, give them hope that even if finances are a drain, there are ways to ensure continuation of treatment. The CCF chooses children with curable cancers and makes sure they don’t drop out of treatment due to financial reasons.
Suthanthira Kannan, consultant haemato-oncologist at GKNM, has broken the news to so many parents. He says parents face three major issues: fear of disease and death; financial burden and social implications. The first is usually tackled with counselling; most childhood cancers have an 80 to 90 per cent cure rate, depending on the stage.
Finances are a huge drain (treatment for leukaemia can cost about Rs. 2 lakh), but there are support schemes, such as the Chief Minister’s Fund that provides a grant of Rs. 60,000 to cover initial treatment cost. The hospital can even help find a donor to sponsor the treatment.
The third, he says, is the most important. “If there are two children in a nuclear family, and one has cancer, the other can feel totally ignored, because the focus is only on one child,” says Dr. Kannan. “Then, there is the issue of how a couple deals with this trauma. There are cases where marriages have broken down because a child has taken ill. A support group works on all these angles,” he says. But, most importantly, it will foster hope.
(The names of children have been changed to protect privacy)
“It is so unfair that along with having cancer, I had to lose my hair too.” A cancer survivor says that losing her mane was the more difficult thing to come to terms with. Perhaps recognising this sentiment, the Coimbatore Cancer Foundation and a beauty salon in the city try to restore a sense of self-esteem in such women who have undergone chemo.
For Latha Verghese and Shanmuga Kumar, franchisees of Page 3 Salon, the idea took shape after a series of incidents. “Someone called us enquiring about wigs for his mother who was to undergo cancer surgery. We visited the lady in the hospital where she tried on several wigs. She was extraordinarily happy.” Then it happened again. “A regular client stopped coming to the parlour. I did not think much of it, putting it down to her busy schedule. But a few months later she sent a wig to the salon requesting us to wash it for her. I was surprised. On her last visit we had given her a blunt cut that she loved. I thought she had second thoughts and wanted her longer hairstyle back. I learnt from her that her hair had fallen out after a chemo session. We fitted her out with a wig and then gave her a blunt cut just like the one she had earlier. She was delighted.”
It was then that Coimbatore Cancer Foundation and Page 3 got together. “CCF sometimes calls us for their counselling sessions. We visit the patients either at the hospital or at their home to explain about the wigs, how they are used, maintained and so on,” says Latha.
The feel-good factor is a huge boost, says T. Balaji of CCF. Cancer is a grave matter, but sometimes it helps to look beyond the medical treatment. For many women, the sense of loss when their hair falls, is devastating. They feel less than whole. There are women who hesitate to undergo chemo because of this. Sometimes, a cosmetic change can go a long way in bolstering the confidence of women and helping them get back into their working environment.”
It is not always about looks. “It is surprising how different each woman’s preoccupation is,” says Latha. “One lady said she did not care how she looked. She was looking for a match for her son and was worried about how families of the prospective brides would receive her.”
The wigs, imported from the U.K are European Union compliant, are non- allergic and ready-to-use. They come in a range of styles and are low maintenance. The price ranges from Rs 7,000 to Rs 30,000. Shanmuga Kumar is aware of the huge financial implications for a family dealing with cancer. “But at least there is an option,” he says. Page3 provides these wigs at cost price. It is a not-for-profit service. They hope some day they can provide this service free to those who cannot afford it. In the last two months Page 3 has provided wigs to seven women undergoing cancer treatment. “But we wish it were a lot, lot less,” they say.
To know more, write to Page3cbe@gmail.com
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