HealthAugust 10, 2020

A day in the life of: A cancer shelter home manager

At a care home for children undergoing cancer treatment in Mumbai, a resident manager spends her day helping staff and families cope with the crisis, while also ensuring the safety of the children.
2020-08-10 00:00:00 India Development Review A day in the life of: A cancer shelter home manager
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My name is Madhubala and I’m a resident manager at the Cotton Green campus of St Jude India ChildCare Centres in Mumbai. St Judes, as it is popularly known, is an organisation that provides free accommodation and holistic support to children undergoing cancer treatment and their parents.

Due to an absence of specialised cancer care in smaller towns and villages, most families are forced to travel to bigger cities for treatment. Many come to the Tata Memorial Hospital in Mumbai. Since affordable housing is a huge challenge in this city, St Judes provides free stays to children and their families for the duration of the child’s treatment, which is usually 6-8 months.

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I joined St Judes a little over six years ago as a centre manager, and got promoted to the role of resident manager just a few months before the lockdown. In my new role, I am responsible for the overall running of the campus, which has the capacity to host 165 families. I supervise the work of seven centre managers—each with a team of five members—and coordinate with housekeeping staff, security, drivers, and other support staff at the organisation. I was just settling into this new role when the COVID-19 crisis hit; I had to quickly adapt and take on many new roles and responsibilities.

Given the already compromised immunity of children due to their chemotherapy, we were very worried that they would be highly vulnerable to the virus. Their safety was our top priority, so in March itself, we took a call to stop all support staff from coming to the campus. Instead, we created two teams with the minimum staff necessary for the campus to function, and each team would stay on campus for a period of nine days, to reduce the possibility of contracting and transmitting the virus. Our physical presence was reassuring to families, even though we couldn’t interact with them in-person like before.

There were (and still are) many misconceptions around the virus and many staff members who had to come to work were, naturally, very afraid at the beginning.

There were (and still are) many misconceptions around the virus, and many staff members who had to come to work were, naturally, very afraid at the beginning. At that time, a large part of my day was spent helping the staff understand the situation better, retraining them, and assuring them that we would support them as an organisation.

Similarly, even for the parents, there were many new things they had to do, such as wear masks, wash their hands regularly, follow physical distancing norms, and stay on campus all day long. The last one was the biggest challenge—many of our families come from villages and they are used to moving around freely. Being quarantined in one place was very hard for them, both physically and mentally.

Over the last couple of months, things have improved a fair amount, and we no longer have to stay on campus. We have standard operating procedures in place that allow us to respond to any situation that arises. Moreover, the number of families staying with us has gone down from 165 to 71, since many families who completed treatment went back home as soon as trains and buses to their home towns became operational.

Group of children sitting together and playing-pediatric cancer

Given the already compromised immunity of children due to their chemotherapy, we were very worried that they would be highly vulnerable to the virus. | Picture courtesy: St Judes India ChildCare Centres

9 AM: I reach office and start my day by reviewing the list of things that need to be done on campus today. The cleaning of the buildings and the campus needs to happen daily and I allocate these tasks to the people who are working today.

One of our centres (each centre houses 12 families) is under quarantine since a mother tested positive for COVID-19 a few days ago. But the children from that centre have to go to Tata Memorial Hospital for their treatment. The hospital has created a separate ward, with separate access and facilities so that the quarantined children don’t come into contact with the other children. We have separate vehicles to take the quarantined families to the hospital, and I make sure that the driver and vehicle are ready for the day.

10 AM: The vegetable vendor has come to the campus. Near our campus, there is no shop or vegetable or fruit market. If the families want anything, they have to travel further outside. Afraid that they would contract the virus with the daily coming and going, we decided to get a vegetable vendor to the campus. For the monthly rations, we have a deal with one of the supermarkets. Once the families give us their requirements, we order it and have it delivered to them.

11.30 AM: Many of my team members have been working from home since the lockdown, and I call them regularly to check-in and see how they’re doing. This period has been quite stressful for the staff, who have had to balance their families at home and centre-related work. Even though they aren’t physically present on the campus, the staff are in regular contact with the families they work with, over the phone.

Communicating with my teams daily and talking about their emotional well-being has brought us much closer.

Today, one of the managers tells me that a parent called her at 11 PM the previous night to complain about another parent. Calling staff members outside of working hours has become common during the lockdown, and the staff often get stressed because this eats into personal time with their families. They understand that the parents don’t do it intentionally, and usually just need someone to talk to, but don’t know how to explain to the parents that they aren’t available at all times of the day.

I listen, and offer advice on how to manage the situation the next time. Communicating with my teams daily and talking about their emotional well-being has brought us much closer, and they trust me in ways that they didn’t before. In fact, because of this crisis, all departments, from admin, to finance, to housekeeping, and security understand each other much better now.

1 PM: Every day we have a lot a of activities happening on campus to keep the children and the parents occupied. Today it is a cooking activity and the parents are cooking rice kheer. Before the lockdown, this used to be a group activity. We would share a nutritious, healthy recipe and the parents would come together to make that for their children. Now, parents use the recipes we give them, but cook individually for their own children.

Madhubala blindfolding a mother as part of a game before covid-pediatric cancer

Pre-COVID-19, we had a lot a of activities happening everyday on campus to keep the children and the parents occupied. | Picture courtesy: St Judes India ChildCare Centres

3 PM: After lunch, I set off for my daily round of the campus, which has multiple buildings. Pre-COVID-19 this was the time I would talk to families and visit the different centres where they stay. Now, we have had to modify this, and I talk to a few parents in the open area around the buildings, keeping physical distancing norms in mind.

Being cooped up in quarantine and having to take on the work of both parents is tiring and stressful, and he doesn’t know how to cope without his wife.

As I walk past the quarantine centre, a father who is standing on the steps of the building, calls out to me, his voice heavy with concern. His wife is the one who tested positive and is now in an isolation centre. He tells me his child doesn’t fully understand what is happening and is wondering why he can’t see his mother for 14 days. Being cooped up in quarantine and having to take on the work of both parents is tiring and stressful, and he doesn’t know how to cope without his wife.

He asks me if he could speak to the counsellor madam, and if I could refer him to her. We work with counsellors to provide additional emotional support to parents and children as they undergo treatment. Usually, counsellors would come to campus on fixed days and have sessions with families, but during the lockdown they do phone and video calls with the families.

4.30 PM: I am done with my rounds and am back in my office. I call up the counsellor to update them on the conversation I had with the father earlier. We move on to talking about how I have been coping with everything that is going on around me. The counsellors are for staff as well as families, and they have been an immense source of support during the crisis.

At the beginning of the lockdown, there was so much going on that I was continuously occupied. Some days, especially when I was staying on campus, I was working from 6 AM to 11 PM. Talking to the counsellor periodically helped me take care of my own well-being, and create the space for me to support others.

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5 PM: I make my way to another part of the building to check on the in-kind donations we have received for the day. We have a few donors who have been providing us with donations of uncooked food items for the families, such as poha, rice, and other grains. Earlier, they would send it across and we would directly distribute it to the families. Now we bring it in, clean it, leave it out in the air for a few hours, and then give it to the families.

9 PM: I’m back home, it’s dinner time, and suddenly I get a call about an emergency on campus—another parent is displaying symptoms of COVID-19. We have protocols and decide on next steps, but my family is worried. I don’t tell them what happened, but from being around and listening to my calls, they understand that something is wrong.

Over the last few months, extended family members have expressed concern about the work I do and ask why I have to physically go to office. Luckily, my husband has been very supportive. He doesn’t tell me to stay at home—I think he knows that I’m not going to listen to him if he tells me not to go, and he’s absolutely right!

As told to IDR.

Know more

  • Learn more about how the COVID-19 crisis has made it difficult to manage the cancer care delivery system.
  • Read this paper discussing the ways in which India can protect cancer care through the COVID-19 crisis and its aftermath.
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