As the Coronavirus overwhelms the healthcare facilities in Kashmir, depriving seriously ailing non-Covid patients of a place for treatment, the Cancer Society of Kashmir is providing support to the cancer patients free of cost Saima Bhat
On July 9, 2016, when Kashmir tipped into turmoil following the killing of Burhan Wani, a 30-year-old woman Nazia was wandering in the corridors of district hospital Anantnag with a bottle of fluid that was drained from her abdomen for the test. But that day no advanced tests were done at the hospital.
Disappointed, Nazia reached home and the only concern in her mind was the bloating of her lower abdomen. “It was during Ramadan I used to feel stiffness in my abdomen but initially, I thought, I am obese, so, maybe my weight is increasing due to overeating,” said Nazia. But her mother also noticed the bloating and they decided to consult a doctor who ruled out any serious problem and diagnosed it as a routine change after a month of fasting.
Nazia’s father, a retired teacher spoke to one of his known doctors who asked him to visit a Primary Health Centre for an ultrasound which showed ascites, accumulation of fluid, in the lower abdomen. She was referred to the district hospital where fluid was to be drained for some necessary tests. She followed the treatment but because of the sudden deterioration in the situation tests could not be done.
At home, Nazia complained of increased tenderness in her abdomen and her panicked father called a doctor working at SKIMS, Srinagar. The doctor asked them to come to the hospital as soon as possible. Following morning the family reached SKIMS where Nazia was admitted and all necessary tests were done. The diagnosis would stun her: she was suffering from an advanced stage of cancer in her ovaries.
The doctors planned the surgery soon but before that, she had to undergo four cycles of oral therapy. When she was scheduled to go for surgery, doctors had to remove her uterus and fallopian tubes along with the ovaries because the damage was huge.
Post-surgery, Nazia had to take two more cycles of therapy and by December 2016, she went home happily. “Overall treatment cost was around Rs 15 lakhs. It was the same amount my father had saved for my marriage but then it was utilized in saving me,” said Nazia with a smile.. “Life is unpredictable. Since then I don’t plan anything.”
Nazia remained on regular follow-ups and all of her medical tests were in range. But in October 2017, her CA-125 test, a cancer marker test, wasn’t good. It was a relapse and doctors suggested chemotherapy again.
“But this time we had no money to start the treatment again,” said Nazia, who was then pursuing her doctorate at Kashmir University.
When she discussed her financial problem with her doctor, he was quick to refer her to the Cancer Society of Kashmir (CSK), which became a ray of hope for her survival. Throughout her treatment at the CSK Nazia said the worst was when she lost her blonde hair and she did not dare to see her face in the mirror.
At CSK’s eleven bedded daycare ward, around 600 patients visit regularly out of a total of 4084 registered patients, who have received chemotherapy doses or other medical help since its establishment.
It was Prof Dr Syed Ashaq Hussain Naqshbandi, a renowned CVTS surgeon at SMHS hospital, who had conceived the idea of the CSK. Dr Naqshbandi was moved to set up the society after a breast cancer patient he was treating refused to visit the hospital as she could not afford the treatment. “He wanted that a poor patient should not die with the grief that if he had money he could have fought the disease,” said GM Mantoo, the executive officer at CSK, while quoting Dr Naqshbandi.
Soon after, Dr Naqshbandi called his relative Prof Mushtaq Ahmad Qureshi, who was at the University of Kashmir, and both involved relatives and friends from all walks of life. “Finally it was on March 20, 1999, when a grand meeting of around 300 people was held at Ahdoos hotel and the idea of CSK was conceived”, says Masood Ahmad Mir, the present general secretary CSK, who was also present in the meeting.
Initially, the CSK started with awareness programs but lacked any address. For any official communication, they used the address of Greater Kashmir as its owner was also a member. “I still remember 300 members on the first day and then the number started decreasing and only a few met frequently,” said Mir, a businessman. The first donation to the society, an endoscopic machine, was made by Dr Mushtaq Ahmad Bukhari, gastroenterologist, a non-resident Kashmiri settled in the USA. Dr Showkat Zargar was also a CSK member and he said we should start with performing endoscopy but the problem was we had no space. So I decided to give one of my rented rooms at Gole Market, Karan Nagar that I used for business,” said Mir. “A few weeks later a patient came for endoscopy and there was an electricity cut, so he donated a generator to the CSK”.
The members started meeting many people and also approached Jammu and Kashmir Bank also donated a few more endoscopy machines to them. Meanwhile the NRK doctor, Dr Bukhari asked the CSK members to start operating from his hotel at Lal Mandi at a rent of Rs 5000 a month.
“This rent meant Rs 60,000 a year, so every year-end Dr Bukhari used to transfer this amount to CSK account,” Mir said. “It was from this hotel that the CSK started operating an OPD where many doctors volunteered to see patients”.
In 2010 CSK purchased a building of its own at Lal Nagar area of Channapora for Rs 73 lakhs. “Those days CSK used to receive donations of Rs 1 or 1.5 lakhs,” said Mir.
At the new building, the CSK increased the OPD to two days: Wednesdays and Saturdays. Also, the society started a six bedded daycare ward where patients were administered chemotherapy. “Those days we used to help poor cancer patients with 25 per cent rebate on the costly medicines, which then increased to 50 per cent and then 75 per cent and ultimately 100 per cent as more donations started coming in,” said Mantoo.
And meanwhile, CSK continued to do endoscopy and ultra-sonography with two machines: one purchased and another donated by J&K Bank.
The CSK then added a diagnostic centre where they got more machines like bronchoscope and video endoscope (worth Rs 25 lakh), mammography (Rs 40 lakh), both donated by J&K Bank, colonoscopy, sigmoidoscopy and lab tests. At this centre tests are being done free of cost for cancer patients and at no profit-no loss basis to the rest of the patients.
The CSK has now thousands of members but only 20 to 30 members are active and participate in the meetings. Elections are held after every three years for a managing body of six members. These members call in five more members who form the managing committee, the working board of the organization. Besides these members, it has two-lifetime members: Prof Dr Syed Ashaq Hussain Naqshbandi and Prof Dr Mehraj ud din.
The CSK has decided to start an exclusive cancer hospital for which they have approached the government. “We were given land twice. One was in Zewan but the local MLA did not allow that to happen. He wanted to convert that land into a park. Then another option was given at Zakura, 39 kanals of custodian land,” said Mir. “The land was with us for almost one year and we built its wall too. We had prepared a blueprint also and had signed an MoU with an NGO. But then custodian general was changed and the new one took possession of land back. The case is still going on with a tribunal. That land has now been given to the education department and they have built a college there”.
As of now, Mir said, they are focusing on diagnostic centre only. “We built a new building where we have an 11-bedded day care ward. Now we have decided to rebuild the main building so as to have a four-storey structure where new machines like MRI, CT scan, a PET Scan and an X-ray can be added.” Mir said, “We have seen our hospitals are overburdened and patients have to wait for weeks together for tests so we will be adding these facilities.”
As the CSK has started giving free cancer medicines to deserving cancer patients, Dr Mareekha Ahmad, a resident doctor, said they don’t refuse anybody. “We give medicines free of cost. Every month we have a total expenditure of Rs 45 lakhs on medication alone,” Dr Ahmad said.
The CSK has a record of all 4084 registered patients, out of whom some have expired. “We give chemotherapy and the patients who need radiation are provided medicines but their treatments are done at SKIMS and SHMS hospitals. We have only those patients registered with us who pursue their treatments at government-run hospitals,” said Dr Ahmad.
Besides medicine, the CSK provides around 1500 colostomy bags a month to their patients too. Since its start, the CSK is said to have given anti-cancer drugs worth Rs 8 crores so far. By end March 2019, the CSK had received Rs 3.85 crores donation, out of which Rs 3.16 crores were utilized for medicines alone and most of these donations come during the holy month of Ramadan.
Most of the CSK donations are received from Kashmiris. “50 per cent of the donations are received online so it becomes difficult to see if the donations are made by only Kashmiris based in Kashmir or by NRKs as well.” Mir said. J&K Bank besides donating different diagnostic pieces of equipment donates yearly Rs 5 lakhs.
The patients at the CSK, Mantoo said, are informed before their registration that the funds the CSK receives are under Zakaat. So it is left to them if they want to take the help or not.
Dr Ahmad, who has been working with the CSK since 2017, said the patients are asked to fill up a form and get it signed by a local molvi and a gazetted officer so as to verify that the patient is eligible for treatment under zakaat.
For the last two years, Dr Ahmad said that they receive patients with cancer in the stomach, colon, breast, oesophagus, gall bladder, pancreas, mouth, prostate, rectum, lungs and blood. “These patients come from all across the Kashmir division and a few come from Banihal and Poonch as well,” Dr Ahmad said. “But I think cancer in colon and breast is on the rise. Maximum patients under chemo are breast cancer patients”. On an average the daycare ward has seven to eight patients daily, she said.
Fatima Begum, 40, a resident of Anantnag district, comes to the CSK every week for her chemotherapy. She was diagnosed with breast cancer a few months ago.
“I had never been to Srinagar city but see my destiny now I am wandering in city for the last 5 months,” said Fatima, a mother of three. Fatima feels helpless when asked about her husband. “He is a labourer but now he is home doing daily chores in the kitchen, vegetable garden and also attending to the cow,” she said.
At the CSK, she has taken her four cycles of chemotherapy and is scheduled to have six more doses after which her doctors will decide if she has to undergo a surgery. Fatima said, for now, her only concern is if her hair will re-grow after the chemo doses.
Of all the patients at the CSK, Raja Begum, 70, a diagnosed case of cancer in ovaries is the most desperate one. Living in a single room with her widowed daughter and her two kids, the family of four members is living with hope of receiving a grocery bag by a local charity organization every month.
“We eat only what the charity provides us. Other than that we cannot afford anything now,” said Raja’s daughter, who was working as a maid at a private office near her residence. She said her mother had undergone a number of surgeries where her gall bladder, uterus were removed but now after new diagnosis, the doctors have prescribed her 12 doses of chemotherapy.
Unaware of her disease Raja said her problem is poor vision, limited audibility and uncontrollable bladder. “We went to Rainawari hospital but doctors say till the SKIMS doesn’t give in writing they can’t go for my surgery,” she said.
Raja and her family live in a one-room house. After her husband’s death, her three sons had their share in the property and left their mother to fend for herself. And her miseries added when her daughter became a widow only after seven years of marriage and her in-laws refused to own her.
(All names of the patients in the story have been changed to protect their identity.)