There is not a dull moment when Tulasi Singh is around. She makes sure that the women’s hall on the fifth floor of the Gadge Maharaj Dharamshala, a subsidised hostel for cancer patients close to Tata Memorial Hospital Mumbai, is filled with laughter and chatter.
Tulasi is from Jalpaiguri in West Bengal. She has barely completed class 4 in school. “I was good at many things, studying was not one of them,” she tells me and goads me to have chai, reassuring me that it is good. “I am like the Big Boss of this place, I tell people what to do and they listen. I only do this to make sure everyone is happy, only then can you beat cancer,” she tells me, half serious and half joking.
Tulasi has been living in the hall for the last eight months since she was detected with breast cancer and she has dealt with her entire treatment on her own. Married at 22 she returned home within a few months, pregnant with her son. She never returned to her husband’s home because the couple had too many differences to reconcile. She lives with her “Bade papa and Badi mummy” – her uncle and aunt who live in Naxalbari, Darjeeling district.
She works at their home and they, in turn, take care of her and her 15-year-old son. For each chemotherapy session, Tata Memorial Hospital requires the patient to be accompanied by her attendant and since Tulasi is alone, she requests one of the other caregivers in the hall to accompany her. She tells me she didn’t face too many side-effects of the chemotherapy and she is the one who rushes to take a patient to the hospital during an emergency.
While her cousin sister came with her when she first came to Mumbai to get treated in Tata Memorial hospital, she left after 20 days. Her brother came later but he would complain that she had ruined his life. She had demanded that he keep her company during the treatment, he said. So Tulasi sent him back. Being alone was better, she said, especially since she could find her way around the city on her own.
Women are primary caregivers in families but when they deal with a cancer diagnosis, they feel shame and embarrassment at being a burden to their families. As they work tirelessly around the house – cooking, housekeeping, rearing children and looking after the elderly – many women with cancer face neglect and abandonment by their families.
In this third story in the Gender and Cancer series by Behanbox, we explore the complex challenges women face when dealing with cancer and how they navigate their way through their roles as patients and caregivers.
For the last six years Shakuntala Yadav, 21, has been caring for her 48-year-old mother Mathura who was diagnosed with breast cancer eight years ago. The family lives in a village near Kanker in Chhattisgarh and Mathura was treated at the district hospital. Now, Mathura’s cancer has returned and spread in her brain and her spine. She was told to undergo radiation and they had to come to BALCO Medical Centre, a 170-bedded, tertiary care oncology facility in Naya Raipur, funded by Vedanta Medical Research Foundation.
I met the mother-duo at the shelter for patients and their caregivers near the hospital. Shakuntala was sitting next to her mother who was frail and could barely talk. Shakuntala had peeled a pomegranate and her mother was eating the fruit slowly.
It has been seven months that Shakuntala has been here with her mother. “My father is in the village taking care of our farm,” says Shakuntala, an only child. It was intimidating for her to venture out of her village alone but now she is independent and proud of it. She adds that she was all alone when her mother had a stroke a few days ago and she had to be rushed to the emergency ward.
Even at home all the household chores are Shakuntala’s responsibility and she has quit her studies after class 12. Her mother was a strong woman who juggled home and farm work. “I could manage studies and my mother’s health for some time but after the cancer relapse she has become weaker,” Shakuntala says. She wanted to be a teacher but she had to put her dreams on the backburner. “Agar main apna dekhoon, toh mummy ko kho dungi (if I take care of my dreams, I will lose my mother),” she says.
When it comes to taking care of the elderly, chronically sick or disabled in a family, it is usually a woman who does the job. Women worldwide spend a disproportionate amount of their time carrying out three-quarters of unpaid work, more so in low and middle income countries. In India, the gap between men and women’s workload is starker – women spend 265 minutes or 4.4 hours in unpaid household work compared to just 31 minutes spent by men.
Gender discrimination within patriarchal structures also represents a factor which increases the burden of caregiving for women, said the report Women, Cancer and Power, published by the Lancet Commission in 2023. “The amount of time dedicated to caregiving is the highest in cultures and societies which designate caregiving as a woman’s role, with many women starting caregiving at young ages, thus missing opportunities for education and employment,” it further said.
The WHO Study on Global Ageing and Adult Health study across Colombia, Ghana, Mexico, India and South Africa estimated the value of unpaid caregiving and found that the cost of unpaid caregiving was equal to 2.53% of national healthcare expenditure in India – the highest among the five countries. It was the first attempt that assigned an economic cost to caregiving in cancer.
“It highlighted how critical women are as caregiving force and how we need to value them, which is certainly not being done now,” says Ishu Kataria, Senior Public Health Researcher (Center for Global Noncommunicable Diseases), RTI International and one of the authors of the Lancet Commission.
Further, there is large evidence that family care-givers experience a lot of emotional distress – sometimes as much as the patient – along with physical strain and financial stress related to the disease. Further a systematic review and meta-analysis comparing health outcomes of unpaid caregivers and non-care givers from Africa, Asia, and South America found that unpaid caregivers, mostly women, had higher levels of anxiety and depressive symptoms than non-care givers.
When women are diagnosed with cancer, the common concern in many families is: who will handle domestic work, we found. Vandana Mahajan, Cancer survivor and Palliative cancer counsellor told Behanbox that she has seen many women handling household chores even when they are undergoing chemotherapy.
“One of them was a 60-year-old breast cancer patient who was undergoing rigorous chemotherapy but had to come to the hospital after cooking rotis for her 70-year-old husband,” she says. He had refused to eat the food cooked by his daughter-in-law. In many other cases she recalled that men scolded their wives with cancer in her presence with remarks like: “Why are you so afraid of the injections, why do you make such a fuss?”
Mahajan said that the patriarchal system, especially in North India, treats women as expendable. “During an awareness session for breast cancer patients, many came to me and said bimari ka kuch hin, yeh bataiye ki hum humare husband ke saath so sakte hain ki nahi (the illness is fine, tell us if we can resume sexual activity or not),” Mahajan says. She adds the women believe that their place in the home is only secure until they are considered to be “useful” to their husbands and available for sex.
Threat of abandonment
In a study published in the journal of American Cancer Society in 2009 on whether life-threatening illness leads to partner abandonment, the authors found that women were six times more vulnerable to partner abandonment than men (20.8% vs. 2.9%). Further, those patients whose partners abandoned them fared poorly, needed greater use of antidepressants, less participation in clinical trials, frequent hospitalisations and had a less likelihood of completing radiotherapy or dying at home.
Bhawna Sirohi, Medical Oncologist specialising in GI and Breast Cancers and Medical Director, Balco Medical Centre said, in her three-decade long career, she has sadly seen husbands abandoning their wives in the middle of or after cancer treatment both in India and UK. However, women have usually been very supportive of their husband’s cancer treatment. She recounted the case of a Sikh lady with fully curable breast cancer whose well-to-do husband, who worked in Dubai, refused to fund her treatment.
“He said ‘Itne mein toh dusri lugai aa jaye gi (I can get another wife at this cost),” Sirohi says. She had to get the hospital to waive off the fees to help her. This attitude is far more common in lower socioeconomic classes where a cancer diagnosis often means no one to cook, care or look after the children and the woman’s treatment is delayed or neglected, she adds.
In another case while working in Karnataka, she found one patient had not come for a few chemotherapy sessions and when the hospital staff called her home, they were told that she had died. “We are stunned. The patient was not even brought to hospital or received any medical consultation for the three weeks she was suffering,” says Sirohi.
Traditional ‘treatment’
Sometime in 2022, Tulasi Singh, first noticed a white spot on her breast while bathing which kept growing. After two months Tulasi noticed she was getting weaker and she finally consulted a homoeopath in her village who told her it was normal and gave her medicines for six months. During this time, Tulasi’s Bade papa died and the lump grew to the size of a lemon. She consulted an allopathic doctor only when she felt an excruciating pain in her chest as she was drawing water from a well in her aunt’s home. The doctor asked her why she waited for so long and told her to go for a biopsy which confirmed it as breast cancer.
Tulasi and one of her relatives then went to Apollo Hospital, Chennai for treatment but when they realised that each chemotherapy session would cost Rs 75,000, they returned home. They then came to Tata Memorial Hospital, Mumbai for treatment in March 2023. She needed 12 sessions of chemotherapy, surgery followed by 15 sessions of radiation. Tulasi had spent Rs 1 lakh by the time we met her in December 2023.
Tulasi’s disease would not have progressed so much had she received a diagnosis and treatment in time. A 2009 study of 825 cancer patients in a public and a private hospital in Delhi, authors found 34.3% cancer patients had used traditional, complementary and alternative medicine and many of them delayed seeking help from clinical medicine.
While half of non-users of traditional, complementary and alternative medicine sought immediate treatment after symptoms appeared, only a third of those using such treatments did so. Further, 12% of them waited six months or more after noticing cancer-related symptoms compared to only 2.1% of non-users who waited this long. Other studies have shown women and those with less education (studied less than primary education) are also more reliant on alternative treatment.
Bhawna Sirohi says many patients go for alternative treatment on the advice of family and friends. “They hear people saying that radiation causes skin to burn, chemotherapy causes skin to darken and so on and by the time they come back to us, the cancer has progressed from treatable to untreatable,” she says.
The lack of tertiary treatment options in rural India, high medical costs and overcrowded public hospitals also keep patients away. Parth Sharma, a community physician, and public health researcher currently working in Maulana Azad Medical College, Delhi says one reason why patients reach hospitals late is because of how the public health system treats them.
Right from the security guard to the doctor addresses them rudely. “I have heard doctors say ‘Maine bola tha tambaku khaneko (did I tell you to chew tobacco)?’.” Further, he adds, this dynamic creates a barrier to care because patients do not trust a provider who does not explain their disease to them. They prefer informal providers or practitioners of ayurveda and homoeopathy because they treat them with more respect.
“Gender and related power imbalances increase women’s social vulnerability, resulting in lower health literacy, fear and experience of stigmatisation, and discrimination by the health system, all of which can impede their timely access to diagnosis, treatment, and quality cancer care,” said the Lancet Commission mentioned earlier. It further recommended that gender-transformative strategies should be designed by the government and civil society to mitigate barriers to early cancer diagnosis.
Stigma battle
Cancer diagnosis is often concealed by patients and their family members due to the many myths and beliefs related to the disease. One is that it is brought on by karma or “bad character” and there is also the fear that cancer may be contagious. This leads to social isolation, gossip and verbal abuse and reduced marriage prospects for self or children and even physical separation within homes – with separate spaces, washing utensils, clothes and living spaces, said a 2021 study on cancer stigma experienced in cancer patients and their caregivers in India published in RTI Press.
The same study included a survey of 20 pairs of cancer patients and their caregivers in two Indian cities and found 85% of patients and 65% of caregivers held at least one stigmatising belief or attitude towards people with cancer and 60% of patients reported experiencing stigma and one third of patients and caregivers reported having internalised stigma.
Further, a quarter of patients reported having had someone say they were worried they might contract cancer from them and 15% reported they had been aware of discriminatory remarks that family members had made about them because of their cancer. Although no patient reported being denied healthcare because they had cancer, 25% reported being denied health insurance because they had cancer.
“There were a lot of fatalistic beliefs about cancer in the community which restricted cancer patients from leaving home or sharing their diagnosis for fear of being socially isolated,” said Ishu Kataria, one of the co-authors of the paper. Especially in the case of cervical cancer, where there is an odorous discharge, people feel that the disease is communicable, she said.
No autonomy even in death
Women also lack the agency to make decisions about their own health, with fathers, husbands or brothers stepping to make critical calls. “Even with the question of whether to have a mastectomy or a breast conserving surgery, a woman looks to a male member of the family to decide,” says Bhawna Sirohi from BMC. “Even when I tell them that both cost the same and the breast conserving surgery will give her the confidence and help her lead a regular life, the choice is made by men.” She points to the fact that men sometimes reject the doctor’s recommendation for a breast conserving procedure for older women.
There is lack of autonomy even in death, says Vandana Mahajan about women with cancer who are never informed about the terminal nature of their cancer because “they would not be able to bear it”. She recounts the case of an elderly lady who had terminal cancer but her son refused to let Mahajan or the palliative physician speak to her about it because he thought she would lose hope.
“Shouldn’t she know that she is approaching death and complete unfinished business – write a will, distribute her assets and say her goodbyes?” Mahajan asks. The woman died in the ICU and had confessed to Mahajan that her son would put a stop to all talk of death and inheritance with the admonishment: “Don’t speak about it, you will get better.”
Women are as strong or as weak as men are on these matters, making peace with the idea of impending death after the initial shock, Mahajan said. She cites the example of an unmarried dentist who knew about the terminal state of her lung cancer but decided to stop chemotherapy. She chose to find the strength to trek to the Valley of Flowers – her lifelong dream.
Smiling through adversity
Tulasi stayed in Gadge Maharaj Dharamshala till the end of her treatment in July 2024. When I last spoke to her, she had just completed her last chemotherapy and was ecstatic.
“I am finally free to go home. My next visit to the hospital is now in January 2025,” she says. Tulasi had not visited home for a year and four months but she had made the women’s hall her home. All the other cancer patients and their families became her family – she laughed, counselled and roamed the city with them.
She managed to befriend everyone she met – nurses, social workers, security guards and through them, she found work. For more than a month, from 10am-6pm everyday, Tulsi painted diyas as part of a vocational work project provided by the Indian Cancer Society and is proud of having earned for her effort.
Despite not knowing to read and write, she managed to raise Rs 90,000 from various charitable trusts that funded most of her treatment. She only asked for money for food and housing from her family. “Kuchh bhi mushkil nahin, poochh poochh kar sab kar sakte hai (it is not hard, you figure things out by asking others),” she told me.
Tulasi was set to do some sight-seeing with other patients and their families before she headed home. She was leaving for Shani Singnapur, a temple town in Maharashtra. “Chalti ka naam zindagi hai, didi (life is about moving on),” she told me.
This story was supported by the Pulitzer Center
This is the final part of the three-part series on Gender and Cancer. Read the first part here and second part here.
This article was first published on Behanbox, a gender journalism platform in India.
Swagata Yadavar is an independent journalist based in Ahmedabad. She writes on gender, healthcare and other developmental issues. This piece is edited by Malini Nair, a consulting editor with Behanbox, and a culture writer with a keen interest in gender.
