Misinformation and stigma has led to major obstacles in cancer treatment in Kashmir. Syed Asma reports on survivors who believe all is not lost after a cancer diagnosis.
In many societies including Kashmir, cancer is regarded as a fatal disease; one that is untreatable. Many cancer patients in Kashmir lose all hope of survival soon after the diagnosis. But oncologists and cancer survivors say more deadly than the disease, is the inaccurate perception people have about it. Several cancer victims in Kashmir have defeated this dreadful disease and are now living a cancer free life. Their doctors say they feel proud when introducing such cases, and appreciate each patient’s resolve to survive.
Dr. Abdul Rashid Lone, an oncologist, says cancer should be treated as any other disease. “Hypertension and diabetesare also life threatening, but patients are quite fine with these and they retain a hope of living. This is the normal approach to tackle a disease. I suggest cancer patients to think along the same about their disease, and I encourage them to come forward for treatment,” he says.
Akhoon Gulzar, 45, was diagnosed with cancer when she was 22 years old. She was married and had three children, two sons and a daughter. Her elder son was six years old, daughter was three and the younger son was one and half years old. They were too young to share their mother’s pain. When she was diagnosed with cancer, her husband, a government employee, was away in Jammu.
It has been 23 years since the diagnosis, but she still tears up when she thinks back to that time. “I still remember the day I was diagnosed with cancer. Doctors told me I cannot live longer than two months now. That was killing!” says Gulzar.
The Right To Know
Doctors suggest that a cancer patient should be the first person to know about his or her diagnosis, rather than his or her relatives. They say the individual should be given a chance to decide his or her life priorities.
According to oncologists, people in Kashmir often hesitate to involve cancer patients in discussions about their treatment. Relatives are usually reluctant to share treatment details with the cancer patient, and in the process, the individual loses the opportunity to decide his or her priorities, and misses out on the counseling aspect of the treatment—considered the most important element.
“A cancer survivor can be the best counselor for a cancer patient, as they can be their best empathizers. But the reluctance of the relatives on both sides is hindering this positive step in Kashmir,”says an oncologist.
Gulzar was among the few patients who knew about her disease long before her family did. “Hearing that I am diagnosed with cancer, I wanted to live! I wanted to see my children growing up, getting educated and finally getting married,”she says.
Many times, her health failed, but she didn’t lose hope. Gulzar went to SKIMS, Apollo and AIIMS to give the disease a tough fight, and ultimately she won. After God, she says she owes her life to her father. “I remember one evening he was sitting by my side holding my hand, I was crying in pain. He said, let God give me your pain and let Him free you from it. I owe my life to him.”Tears roll down her pale cheeks as she talks about her father. He died of cancer.
Gulzar has undergone two surgeries and has received many doses of chemotherapy. She is presently living a cancer free life. She believes the desire to stay alive is enough to defeat this disease.
After being diagnosed with cancer and while receiving treatment, she had decided to live out the best of her life. For her ‘the best’ means seeing her children getting married. Two of her children are now married and she has a grandsonas well. Gulzar says the joy of being a grandmother had lessened her grief and multiplied her joy.
Being a cancer survivor has not affected the efficiency of her work; she says she still works more than her daughter and sister-in-law. “The day I consider myself diseased, I will have to be bed ridden”, Gulzar says. “I trust God, my doctors and I believe I am cured and I am!” She now comes for her follow up checkups and manages it by herself.
Against the Odds
Cancer survivors consider themselves to be fighters, as they have been able to break the jinx associated with this disease. Sheikh Fatima (name changed), a housewife, was expecting her second child when she was diagnosed with a cancerous cyst in her uterus. She was operated upon, and had to abort her child.
“I did not know I had such a serious problem, I came to know about it only when I had to attend the therapy session”, says Fatima.
In the operation, one of her ovaries was also removed. She was advised to have chemotherapy and only three doses cured her.
Chemo and radiotherapies make patients weak and often lead to severe hair loss. But none of this should discourage patients, suggest some cancer survivors.
“Weak health and hair loss both occurred for me, but I resisted and regained both back”, says Fatima. She suggests patients to consider these as after effects of the medication. “While under going chemotherapy, I would observe other patients. Some were in a worse condition than I was in, and others were relatively better. The former motivated me to thank God and the latter raised a hope of living in me,” says Fatima.
She says since the day she was diagnosed with cancer, she stopped planning her life. “Every day that now comes to me is a miracle for me. I take it as a gift from Allah. I live the maximum each day now. This life is just perfect because it was decided by Him [God]”.
It has been six years since Fatima’s diagnosis. She is now happily living a disease free life with her husband and two sons. She has even given birth to a son after one of her ovaries was removed.
Diagnosis at the right time and effective treatment can cure cancer, but being unaware of the same can lead to setbacks. Sakeena Rather was diagnosed with Wilm’s tumor in her kidney when she was three. Sakeena’s father disowned her and her mother because he thought if he will keep them; his entire progeny will be affected by the disease. He perhaps thought it is communicable.
Sakeena’s mother Shafiqa tried hard to make life easy for her daughter and in the process neglected her own health, according to Shafiqa’s brother Ali Mohammed. “Shafiqa struggled hard, she arranged money, she prayed day and night to see her daughter alive and healthy, but she herself succumbed to poor health and left Sakeena alone,” he says.Ali complains Sakeena’s deteriorating health and the family’s meager income did not give her enough time to think about her own health.
Despite awareness campaigns, stigmas are still attached to cancer patients in Kashmiri society. Oncologists say this approach has often led to patients being reluctant about coming forward for treatment, and the unmarried population bears the burnt. “Unmarried girls, and women who have unmarried daughters are very hesitant to come forward for the treatment because they think if any relative sees them visiting this ward, they will have difficulties looking for a matchfor themselves or for their daughters and that is true, says Dr Lone.
“If at all they come for the treatment they hardly come back for follow ups”.
Ten years ago, Saiba (name changed), 28, had to remove her thyroid gland as she had a cancerous cyst present on it. Today she isliving a normal, healthy life. But her parents have not let any of their relatives know that Saiba was once diagnosed with cancer.
Her family says they did not feel comfortable in sharing this, because they feared Saiba would then have problems getting married in the future.
The 18-year-old girl had lost her voice for more than a year, as her vocal cords were damaged when her infected glands were being removed. Her joints were jammed for about six months, and she could not move. “Bearing that physical pain was quite easy compared to the pain of rejection in the society,”she says. The visible scar of surgery on her throat worries her and her parents. She says that on several occasions, she has thought of cosmetic surgery to hide the cut.
Saiba has currently completed her post graduation, and is employed.
Every cancer survivor should be a success story, but in Kashmir, these survivors are a secluded population when it comes to acceptability. As such, there is no detailed data on cancer in Kashmir. However, according to global statistics, 33 percent of cancer patients can be completely cured, and can move on to living a cancer-free life. Another 33 percent of patients can have their life span increased with the help of medication. The remainder percentage is advised to live each day of their lives in the best possible way. Local oncologists believe the same date is applicable in Kashmir, provided there is timely diagnosis.