‘Daily Mental Trauma’: Life of Cancer Patients in the Lockdown
“I’m worried about leaving my house and getting COVID-19 as I have low immunity - but I need my cancer medication.”
When a health pandemic occurs, and the nation goes into lockdown - everyone is on edge. But what about the quiet sufferings? Already sick or recovering patients - who are more vulnerable to the COVID-19 disease, who find their treatment and often critical care suddenly being re-examined?
FIT speaks to cancer patients during the COVID-19 lockdown to find out how they are coping, what specific fears do they have and how are some of them - already immunocompromised from chemotherapy - braving the lockdown to go out and get checked at hospitals.
‘We Have Daily Dilemmas, Mental Trauma’ Say Cancer Patients
"We have daily dilemmas and are forced to think creatively,” says Akriti (name changed on request), a counsellor from Mumbai who is currently taking care of her mother, who was diagnosed with bone cancer last year.
Akriti’s mother, Dr Ankita, is “completely immunocompromised - she was a heart patient and had multiple strokes, has cancer and is of advanced age.”
Shabbir Beguwala a 66-year-old cancer patient from Thane adds,
“Everyday, I feel a lot of mental trauma about what will happen next, there is a lot of uncertainty.”Shabbir Beguwala, cancer patient.
One of their biggest fears in medication - or the potential lack thereof.
Akriti says that her mother broke her hip and cannot go to her regular once in three-week appointment, and instead needs pain medication.
“She takes the Fentanyl pain patch, a narcotic drug, and doctors can only prescribe 2 packs at a time. Earlier, I would get it from our palliative care sources and through a network of distributors who would deliver it at a lower cost. Now, they are not able to come home, and I have to source these medicines myself.”
She says she has found a pharmacy nearby but is worried about how long stocks will last. “ I had to scramble for a few days to get the medicines. And this dangerous and I am worried about exposing myself and my mother to the virus.”
Shabir adds that his stock is due to get over by 10 April. “It is very difficult to procure it and not taking them will create an even bigger challenge.”
Another obstacle in both Shabbir and Dr Ankita's path? Blood tests.
Akriti says her mother needs to get her blood count tested, and the pathologist who used to do home visits has shut his lab. “If her count goes below a certain number she needs a blood transfusion and so we need to get tested. We may have to go out. I’m keeping an eye of her to check for signs of weakness but this is difficult as she is already in bed with a fracture so it is hard to tell.”
From the ambulance to the hospital, Akriti is worried about exposing her mother but they are “taking it one day at a time.”
“There are so many issues that can come up from calling an ambulance, getting essentials, going for blood tests. We are lucky we are able to manage so far.”Akriti, counsellor and care-giver
Shabbir says he is touch with his doctor virtually. "My oncologist replies on email, not text. But he replies instantly. He told me to go to the nearest path lab and not expose myself too much but I have to go to the hospital in Charni Road (South Bombay) as they have my history. I’m very worried about this.”
Both Shamir and Akriti say they are lucky to live in helpful societies.
‘We Are Forced to Make Ethical Decisions Everyday’: Doctors
Meanwhile, oncologists around the world have been struggling to help all their patients and protect them from the virus.
“Right now, private hospitals are functioning at 1/8th, 1/10th their normal capacity and almost 74% of cancer in this country is delivered through the private sector,” says Dr Sameer Kaul, an oncologist surgeon at Indraprastha Apollo Hospitals, Delhi.
Cancer is very case-specific, and there are many types of cancers that require different treatment and attention. For example, it is very difficult to stop chemotherapy for childhood leukaemia patients without risking fatalities. Bone marrow cancer patients are also “completely vulnerable,” says Dr Kaul.
According to The Lancet, “different cancers produce immune suppression to different extents. Blood cancers often directly compromise the immune system, so those patients are probably most at risk, whereas cancers such as colon cancer, breast cancer, and lung cancer do not typically cause immune suppression that is not treatment-related.”
A doctor at a government hospital in Mumbai who wishes to stay anonymous tells FIT that often the strategy is of treating the easier patients, “like less complicated surgeries, breast cancer patients,” rather than the more critical ones as those would use more of the hospitals' resources this time and may expose the patient to COVID-19 if it gets worse.
There are guidelines from oncology societies worldwide, but the course of action is always case-specific. Most doctors are advising stopping chemotherapy (unless it is essential) and elective surgeries are being cancelled.
Do you treat a critical patient first as they need more help but risk more of the hospital staff and potentially delay other patients help? Or do you treat a patient that can be cured sooner?
Typically, doctors make choices of which patient should be treated on priority and depending on the availability of critical care beds - but in a pandemic with overburdened healthcare systems, the choice becomes strangled.
“These are private battles docs and patients are fighting. It is an unnatural situation in oncology where we don’t have such emergency situations.”
“Everyday we are making ethical decisions. But we oncologists are used to making tough choices - although this is definitely unprecedented.”Dr Sameer Kaul
Another issue is the lack of healthcare workers on shift to help with the case overload. Both doctors say transport for their staff is a huge problem, and they are dependent on a rota system in each department.
Dr Anne, a palliative care physician at Bandra’s Romila Palliative Care (RPC) helps support cancer families through counselling and home-based care.
She tells me a huge concern is the mental stress of her patients.
“We work with 250 cancer and chronic illness patients from Dadar to Borivali. In the current lockdown, I have been trying to do as many home-visits as I can and the voluntary doctors in our team are doing phone consultations and check-ins.”
She tells me she wears a stethoscope to avoid being stopped but can still only go to houses in walking distance. “Besides,” she says almost sheepishly, “I am also worried about myself a little. I am alone here (her house is in Pune but she has been unable to go back) and I am vulnerable too.”
At 75, she is also at risk of COVID-19. “But what to do?” she says.
RPC currently is helping with food coupons - although many cancer patients live alone and cannot get out. They are helping source emergency medications and pain medications - and make up the supportive backbone to patients who would not be able to access medication otherwise.
Equal Access to Support
Cancer is often called a great equalizing disease as it impacts everyone - but some people are often hit worst.
The haunting image of the cancer patient outside AIIMS during the lockdown proves that accessibility to homogenous care is one of our biggest crises.
With the state borders closing, many doctors are worried their patients - especially those in lower income groups or in cities without access to quality medical care - will be stuck.
Ruby Ahluwalia founder of non-profit Sanjeevani - Life Beyond Cancer works with cancer patients across the socio-economic spectrum, in government hospital OPDs with underprivileged cancer patients.
Counsellor Desiree Punwani says that they help in the wards, help with logistics and options - “There are so many variables with cancer care, so many costs and we help patients with their options.”
She says that since the lockdown, hospitals have stopped social workers like them from coming in and hand-holding, which disproportionately affects lower-income patients.
“For 2 days after the lockdown happened, we were dumbstruck. We were getting calls from cancer patients from all the 14 cities (in 10 states) we work in, and we were wondering how we could help.”Ruby Ahluwalia
They set up an online platform, and have volunteers reaching out to 750-800 cancer patients every day. On Monday, 6 April they launched an online group therapy session, a 36-day wellness program that helps patients understand their own cancer through therapy, nutrition and more.
“We were worried about smartphone access. Some of our patients borrowed smartphones and logged in to zoom. It was a beautiful experience with 220 patients online.”Ruby Ahluwalia
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