Assam cancer patients failing to get treatment in Mumbai brave long road to Guwahati despite COVID-19 scare, but they may be in for a rude shock
Lack of prior official communication to the institution of this arriving batch of patients who may actually opt for treatment at the B Barooah Cancer Institute in Guwahati might lead to a difficult situation.
Editor's note: This story has been updated to reflect the comments by the B Barooah Cancer Institute in Guwahati.
A simultaneous fear of contracting COVID-19 and that of cancer taking an irreversible turn can be distressing for any individual. It is a between-the-devil-and-deep-sea kind of choice that many cancer patients now travelling to Guwahati from Mumbai by road had to make. A mere search on Google Maps explains the arduous nature of the journey for healthy individuals, leave alone for those who have not only to worry about a critical disease like cancer but also with the constant threat of the novel coronavirus.
The distance between the Assam Bhawan at Sector 30 in Navi Mumbai's Vashi and the Sarusajai Sports Complex in Guwahati is a massive 2,731 kilometres traversing through the states of Maharashtra, Madhya Pradesh, Uttar Pradesh, Bihar, West Bengal and Assam taking a minimum of 50 hours of non-stop driving. It's a daunting task even for normal times and amid the lockdown with such vulnerable individuals as passengers, it is far more unnerving. The sheer distance between the two points makes one wonder why such a journey became so necessary to take.
What prompted this risky journey
"These patients told us that the Tata Memorial Hospital in Mumbai refused to treat them because the institution literally shut down its out-patients department as patients from all over the country were coming to the hospital. The institution feared that it might become a hotspot for the coronavirus. These people were caught in between neither here nor there. Most of these cancer patients hoped that the Tata Memorial Hospital would treat them. These patients were not even allowed to enter the Tata Memorial Hospital premises," Joint Resident Commissioner of the Assam Bhawan in Mumbai, Devasish Sharma told Firstpost over the phone through a patchy network from somewhere in Uttar Pradesh as he was himself accompanying this group to Guwahati.
Apart from his administrative responsibilities as a bureaucrat in the Assam government, Sharma is also the founder chairman and trustee of Deepshikha Foundation that focuses on cancer care.
The decision to hit the road with this group was taken after much thought and repeated appeals from the people who got stuck at the Assam Bhawan in Navi Mumbai and could not go anywhere because of the lockdown. They were worried that the measures to protect them from COVID-19 would actually end up aggravating their cancer.
"'If we go back to Assam now, at least we can get chemotherapy at the B Barooah Cancer Institute in Assam (Guwahati),' this is what many of them told me. That’s why they requested us to somehow take them back to Assam. Their logic was that while we are trying to save them from coronavirus they will die of cancer. Whatever way it is possible they only wanted to get back to Assam. The reason that the Tata Memorial Hospital in Mumbai refused to treat them was the greatest reason behind this decision," said Sharma.
The B Barooah Cancer Institute in Guwahati also had a scare when it was shut for three days till 10 May with one of its cleaners being sent to quarantine when her grand-daughter passed away in the campus itself due to COVID-19 which was unfortunately detected only after her death. Although the institution has started its limited service from Monday by keeping its emergency services open and allowing radiation and chemotherapies, the cancer hospital is functioning with extremely skeletal stuff.
Most of the staff who reside within the campus have been sent either on home or institutional quarantine leaving only those staying outside the premises available for duty. What can pose as a challenge for the patients and hospital alike is that the institution is likely to function in this manner for 28 days with 8 May being the starting date for this kind of minimal functioning. Even as the cancer patients from Mumbai are already en route to Guwahati hoping for treatment at the B Barooah Cancer Institute, they might be in a for a rude shock. Lack of prior official communication to the institution of this arriving batch of patients who may actually opt for treatment at the B Barooah Cancer Institute might lead to a difficult situation.
"We came to know that they are returning to Assam only from television and newspapers. Neither the (Tata Memorial) hospital nor the Assam Bhawan or the (state) government has made any communication to us in this regard so far. Because of the detection of the death of a COVID-19 positive victim on the campus recently, we have only 10-12 percent of our total staff strength working. Only emergency situations like blood transfusion and saline are being administered as and when needed. Rest of the functions of the institution have more or less stalled. So in this situation, even if these patients come to us they may not get the desired results," Dr BB Borthakur, medical superintendent of B Barooah Cancer Institute in Guwahati told Firstpost.
The B Borooah Cancer Institute was formally taken over by Department of Atomic Energy, on 27 November, 2017 as a unit of Tata Memorial Centre in Mumbai.
The detection of the death of a COVID-19 positive teenager unfortunately on the same day these patients started their journey from Navi Mumbai now may become a huge obstacle in fulfilling the very purpose of this risky journey itself -- to get treatment for cancer.
"The reason we decided to take this difficult journey is that our only aim is to save them. If they can get chemotherapy in Assam, they should get the chance. These are desperate times and such decisions have to be taken. Since the journey itself is long and dangerous so I am personally accompanying them. Their lives are also precious. If we keep them at the Assam Bhawan in Vashi because of their comorbidities even then they will face very high risks to their lives," he said.
It is not that all patients who were lodged at the Assam Bhawan are on this road journey to Guwahati.
"We have brought only those patients with us who are fit to travel. We have not brought those patients who are already in serious condition. Patients whose treatment are on are still in Mumbai. We also have patients with us who are travelling to Assam because their chemotherapy sessions at the Tata Memorial Hospital were suddenly stopped due to the novel coronavirus. They are being called again after six months," the joint resident commissioner said.
"We are not doing this journey on our own. These patients who were there at the Assam Bhawan in Vashi became very desperate. So much so that a few of them even told us that they will commit suicide if they were not allowed to return to Assam," he said.
Opting for the highway was of course not the first choice. However, the circumstances before this journey began were such that it only ended up becoming an inevitable choice.
"Initially, the Assam government tried to make arrangements to bring them back to the state by air. In order to facilitate that we conducted COVID-19 tests among the patients and their attendants. However, four of them turned positives including attendants. Immediately the airlines refused to fly them fearing infection to their staff. That literally dashed the hopes of these people who are travelling by bus today. So they became desperate to go to Guwahati even by bus," said Sharma.
Although the Tata Memorial Hospital could not speak for those who are not registered with the institution yet, the facility claimed that it is otherwise looking to help those who are already registered with it.
"We are taking care of our patients who are stuck here. We are looking for their accommodation. We are planning to write a letter to the railways to book a separate bogie to transport these patients to their respective regions. We are approaching the government for any special train arrangements that can be made to different locations of the country. The patients can also contact us through the public relations department and through the medical superintendent's office," said a Tata Memorial Hospital spokesperson.
As many of the patients at the Assam Bhawan were yet to register with the Tata Memorial Hospital it only made matters complicated for them. Medical help also became sparse at the Assam Bhawan in Vashi soon after COVID-19 was detected among its residents. Such were the circumstances that Sharma who has basic medical knowledge owing to his association with Deepshikha Foundation and his experience of dealing with cancer patients for long had to administer injections himself.
"When COVID-19 positive people were detected at the Assam Bhawan it immediately became a quarantine centre. So neither medical staff nor paramedics were willing to come to the government building. They feared of getting infected themselves. No one agreed to come despite our requests. These cancer patients are already vulnerable. Their blood count decreases fast. Or some of them would have to be administered with some other medicines. So when no doctor or nurse was willing to come then I had to do it myself. I know how to administer a basic injection. There were a few complicated injections which I administered under guidance from a doctor in Guwahati via video conference," he said.
The group that Sharma is not a small one either with more than 100 members travelling in a convoy of six buses.
"I am accompanying a party of 132 people out of which 65 are patients and the rest are attendants. Out of the 132 people, 40 are women including patients and attendants. Apart from them, six children who had undergone surgery at the Narayana Hrudayalaya in Mumbai are also coming with us. They were also stuck there. All buses have passengers only up to 50 percent of their total capacity. These buses have a capacity of 40 passengers and we have allowed only 20-22 in each of them," the joint resident commissioner said.
Narayana Hrudayalaya runs the SRCC Children’s Hospital for children in Mumbai.
Challenges on the road
The biggest worry apart from managing basic necessities like food and toilet is the fear of running into a medical emergency.
"We are in touch with the police as we are moving along. If there is a medical emergency they will help us in getting to the nearest medical facility. Moreover, we have equipped one bus for such contingencies which has oxygen cylinders and other medical equipment. The plan is that if such a need arises that particular bus will take the patient to the nearest hospital while the other five buses in the convoy will continue their journey," Sharma said.
With hardly any roadside eateries open, these travellers are facing an issue but with NGOs pitching in there is no acute shortage.
"We are facing difficulties regarding food because no roadside dhabas or hotels are open. We did not expect that everything will be closed. However, many Jain organisations are coming forward to help us when we informed them of our situation. Their gesture has helped us tremendously. Throughout the entire route so far either the Jain community or the Jain mandirs has played a huge role in this regard. While on the way itself we had to establish this network to ensure smooth availability of food. The Jain community in Mumbai has been instrumental in this regard," the joint resident commissioner said.
Although the team is travelling by luxury coaches, the sweltering weather is causing some discomfort.
"Apart from food, the other challenge for us is the hot and humid weather. Whenever we stop the temperature is as high as 37°C which is causing some discomfort. However, there has been no issue regarding fuel thus far. The fuel depots are open," he said.
Availability of toilets has fortunately not posed as a problem for these passengers.
"For toilets, they have identified a few places where there are four to five toilets available. These are not sophisticated hotels. We allow the people to get off in a group of five and after they return from their morning ablutions another five goes," the joint resident commissioner said.
Apart from food, fuel and toilet requirements, the journey has been pretty much non-stop for them. With these luxury buses having wide berths and comfortable ambience, most of the passengers spend their time sleeping. There is also a concern that stopping by the roadside for long may not be a safe idea and could compromise with the security of the convoy which is travelling without any police convoy.
Patients, attendants cannot rush home after reaching Assam
In view of the COVID-19 protocols, these people cannot go to their homes soon after they reach Assam. Apart from the COVID-19 tests, their prevailing health condition will be a determining factor. The joint resident commissioner and the staff of the six buses will also have to undergo COVID-19 test in Guwahati.
"They will be taken straight away to Sarusajai Sports Complex in Assam. After the initial process, they will be accommodated at a hotel in Guwahati. If it turns out to be positive, a different set of protocols will follow," Sharma said.
Even these buses won't be able to return immediately. Only after the test results of the staff are out and found to be negative, will they be allowed to return.
The joint resident commissioner who is also from Guwahati won't be able to visit his parents either.
"I won’t be able to go home in Guwahati but my parents will come down to Sarusajai Sports Complex to meet me. But I won’t be able to get closer to them. It would have been great to visit home after such an arduous journey but rules are rules and they will have to be followed," the joint resident commissioner said.
Sharma took over responsibilities of the Assam Bhawan in Navi Mumbai in 2003 when he took over as the deputy resident commissioner. Since then, he has been associated with the facility which is now reserved only for cancer patients who travel from Assam to Mumbai for treatment of the deadly disease.
"My biggest concern is that I need to ensure that they reach Assam safely. For everything, they look towards me. They are dependent on me. This itself is a massive responsibility. I only pray that I can perform my duties well. There are still two or three days of the journey left. No one can say what will happen where. We are just hoping that we reach home without any trouble. We are going to dine tonight in Lucknow and we hope to reach Assam on 12 May," the joint resident commissioner said.
He added that the Assam government is bearing the cost of the whole journey of the group. "In the case of Maharashtra government, its own hands are full. I must say the Maharashtra Police has helped us quite a lot in this journey particularly at tolls. Their officers also enquired about food and water. What more can they do?" the bureaucrat asked.
Once he reaches Guwahati, Sharma is set to return to his workplace in Mumbai by the same bus. "I will have to go back because since I left my station in Mumbai the COVID-19 patients who are admitted there have already become nervous due to my absence. Although they proved to be COVID-19 positive, they are asymptomatic and are hoping that I will go and get them released from the hospital after 14 days of quarantine," he said.
For now, the convoy is passing through Muzaffarpur in Bihar with the temperature hovering around 32°C and at least another 900 kilometres away from its destination of Sarusajai Sports Complex in Guwahati.
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