Inhuman behavior of doctors at BHU

The hospital at BHU is the biggest ray of hope for millions of people from Purvanchal, Bihar, Madhya Pradesh, Chattisgarh, Nepal and many other places in India. Patients from all of these places come to BHU to get medical treatment because it is the biggest hospital of this region but the management, staffs and doctors are so corrupt and cruel that they have become demons, no humanity at all. The people from Varanasi themselves have the feeling that BHU hospital has the best doctors and other medical facilities but if you do not know people personally there then don’t go. If you know people then things are easy otherwise its a serious challenge to get anything done at that hospital.

Everything is super difficult starting from registration till getting treatment, buying medicines or even getting subsidy which is the right of the patients. Lets start from the beginning, the first process is getting registration which mean you will have to be in a queue as there is no process of doing it online and the queue is so big that you might have to spend an hour or two just standing in the line. Second step is seeing the doctor which means again huge queue and corrupt system. If you know someone at the OPD then doesn’t matter how late you show up or even if you have registration or not, you will go and see the doctor directly but the people who showed up early, were in the queue waiting for their turn will have to wait.

At BHU OPD usually there is one senior doctor and may be 5-6 junior ones. Junior doctors are the ones who see the patients first and if they feel like needing help of the senior doctor only then they discuss the case with the senior one but again if you know somebody then senior doctor will see you first which really hurt others. If the doctor suggests some kind of blood test or CTscan or MRI then again problem. All the facilities are available at the hospital for cheap cost but the queue is so big that in case of an emergency it is impossible to wait for your turn. The appointment for CTscan or MRI could be even a week or two. In this case most of the people pay a higher price and get the test done at some private center where the doctors get commission.

If there is any emergency and the patient has to be admitted in the hospital then they don’t have beds available. Actually they always have beds available but only if you know someone working at BHU. It has happened with so many people whom I know personally that they were denied the admission first but when they approached someone powerful then immediately the patient was admitted otherwise the patient has to lay down on the ground in unhygienic condition while the treatment is going on. Forget about getting a room, it is a serious challenge to even find a stretcher. You will always see patient’s attendants running around here and there looking for a vacant stretcher. And when the patient is admitted then the real drama of commission business starts and I know it very well that it all happens with involvement of BHU staffs.

Actually different people who have medicine business outside BHU premises start approaching the attendants of the patients asking them to come to there shop and buy medicines from them. In exchange of it they promise discount which is nothing other than a scam because hospital pharmacy is a lot cheaper than any discounted rate offered by these outside shops. There is already a pharmacy inside the hospital premises where they provide subsidized medicines. In a lot of cases doctors themselves ask the patients to buy the medicine from some shop outside the hospital because they get huge commission. My personal most recent experience of such case was only about an year ago when a lady in my neighborhood went to the BHU to get treatment for her breast cancer. 

Doctors did biopsy and confirmed that she had 3rd stage of breast cancer and she needed urgent treatment. They recommended her chemotherapy first because her tumor was very big. The doctor herself asked the patient to go to a particular shop outside the BHU campus and bring the medicines from there only. But there was already an AMRIT store at the hospital which is a program started by Modi government in the year 2015 which sells cancer and heart related diseases medicine and implants for 50 to 90% cheaper than the market rate. Statistics indicate that Indians diagnosed with cancer are 700,000 every year. About 2.8 million people have cancer at any point of time and half a million die of the disease each year. The annual figure of women being diagnosed with breast cancer in India is 145,000, according to the World Health Organisation.

A significant number of patients (nearly over 50 per cent) stop visiting hospitals after two or three cycles of chemotherapy due to unaffordable costs. Hence, the aim to reduce the expenditure incurred by patients on treatment of cancer and heart diseases, has launched the Affordable Medicines and Reliable Implants for Treatment (AMRIT) program. The patient went to the shop recommended by the doctor and asked the cost of the medicine. The shop owner said it would cost them around Rs. 17-18,000 which sounded very expensive because I used to pay around 5000 at TATA memorial hospital, Mumbai for my mother’s breast cancer treatment so I suggested the patient to inquire about the cost at AMRIT store inside the hospital.

The patient went there and was shocked to see that the same medicine’s cost at AMRIT store was around Rs. 4000. The patient came from a very poor family back ground and I was helping them to get some financial aid from the government but it takes some time and he she needed urgent help. So she decided to go for the treatment with whatever savings she had. They bought the medicines from AMRIT store but before starting the therapy they went to the doctor again to show her all the medicines because they could not believe that there would be so big difference of cost between the shop outside and AMRIT store at the hospital. The doctor looked at the medicines and said that everything was all right but suddenly asked for the receipt of the medicine.

They showed the receipt to the doctor and as soon as she saw the receipt of AMRIT she got super angry and started shouting at the patient. She was upset about why did they buy the medicine from AMRIT store when she had asked them to buy it from somewhere else. They explained the reason that it was almost 4 times cheaper at the AMRIT and they come from a very poor background that it was impossible for them to even spend that Rs. 4000 at AMRIT store, forget about paying 17,000 at some other store. But in any case why would I pay 17,000 for the same thing which costs me 4000?. But that cruel inhuman doctor did not want to hear anything. She threw the medicines away and told the patient that if she can not bring the medicine from that particular shop, where she wanted them to buy it from, then she can go anywhere she wants or start the treatment by themselves.

They were crying and requesting the doctor to start the treatment as they could not afford the medicine from outside but no result. It was not only my patient but several others also had the same problem. They were all complaining about the same thing. Now we had no idea about what to do because she needed urgent treatment. There was another cancer hospital in Varanasi run by Indian Railways where we did not really want to go at first because BHU had better facilities but there was no other way. Finally we decided to go to the Railway hospital, explained them all of the problems and the doctors there were so nice that they accepted the patient. They also agreed to use the medicines brought from AMRIT store but they were also shocked to hear the story.

Somehow her treatment started at the Railway hospital. Every time she needed a chemo we would buy it from AMRIT store at BHU but get the therapy at the Railway hospital. But sometimes you are too unlucky or maybe unlucky for a while with better future waiting for you. Only after three Chemos the Railway hospital was closed temporarily because TATA Memorial center from Mumbai had taken over it and they needed sometime to develop the hospital infrastructure and other facilities as per their own standards. TATA hospitals are very good, they have proper hospital management system, good doctors and subsidized medicines. On one hand we were sad that my patient’s treatment was going to be stopped but on the other hand it was also a happy news that future would be better.

All of the cases of Railway hospital were transferred to BHU and since it was done on the government level we did not face the same problem again. Rest of the Chemos were done at BHU and they also accepted medicines bought from AMRIT store. Now just imagine the cruelty of that doctor who had refused to treat my patient only because she could not afford to buy the medicines from the shop preferred by the doctor. And the reason why they send the patients to certain shops only because they get commission. Patients life, suffering, pain…. nothing matters to them. The only thing that matters to them is money. Being a local of Varanasi at least I could even think of other options but just think about the situation of those poor people who come from far away places……Just impossible to even imagine their situation.

Anyways, the reason why I am writing this post is because the media reported today about a similar case that happened at BHU. The report said that a patient from Aurangabad, Bihar who needed cardiac surgery was admitted at BHU in May 2017. Since they came from a very poor family they had applied for government help and the government had already sanctioned Rs. 1,75,000 for their treatment. Usually this kind of money is directly transferred to the hospital or the patient can get treatment, present the bills issued by authorized government pharmacy center and get the refund. The patient showed the documents stating that the government had approved 1,75,000 for the patient but again the doctor denied the treatment. He started making all the fake stories and asked the patient’s family to deposit Rs. 2,50,000 at a particular shop outside the hospital.

The patient’s family did not have that much of money so they mortgaged their agricultural land and somehow arranged money and gave it to the shop owner. The operation cost at BHU is almost nothing, I don’t know the present rate but I still remember that I had deposited only Rs. 500 for my cousin’s heart valve surgery around 10 years ago. All the major expenses are medicine cost. Finally the surgery happened and the patient was discharged from the hospital. They went to that medicine shop asking for the receipt of the medicines so that they could get a refund from the government but they gave them receipt of only Rs. 1,80,000 whereas they had given Rs 2,50,000. The family lodged a complaint against it to the Medical Superintendent of the hospital.

The MS called the shop owner and asked him to return rest of the 70,000 which he agreed but later denied but never returned that 70,000. Now another problem is that the patient’s family can get refund only if they can present the receipt issued by AMRIT stores because all the medicines at AMRIT stores are already highly subsidized but the doctor had sent the patients somewhere else and it was again done only because the doctor must have been getting commission by sending patients to that particular pharmacy. When I hear such stories, I don’t know what to say, the only thing I can say is that such people are monsters in human face. Just imagine the situation of that patient’s family.

They had to go to the government because they did not have money, they had to mortgage their land and now they can’t even get the refund from the government only because that evil doctor’s greed, their whole life is destroyed. And I  know it very well but it is not the only case, it happens everyday with several people but we only hear about a very few stories. I am not saying that all of the doctors are bad at BHU or it is happening only at BHU but its a fact which can’t be ignored. Its happening everywhere in India, everyday with so many people. I hope that with more and more transparency and online system this problem will solve in future but it seems like it is not going to be solved some time soon, we will have to suffer with this system in future as well but wish to see it completely changed before I die. I would like to thank to Mr. Modi for starting such project, I know how hard it is for him to solve this problem of corruption but I have a hope. At least he started something and we all know he is doing his best to fight corruption, Thanks for being what he is! Peace.

New Paper article

Quality medicines at affordable prices

सितम्बर २१०६ में मैंने एक लेख था कुंदन के किडनी ट्रांसप्लांट के बारे में जिसमे इस बात का भी जिक्र किया था की कैसे ट्रांसप्लांट होने के बाद उसका दवा का खर्च लगभग 12,000 प्रति महीना है जो की कुंदन जैसे विद्यार्थी जिसका परिवार गरीबी रेखा से नीचे वाले वर्ग से आता है उसके लिए लगभग लगभग नामुमकिन सा था. शुरू के कुछ महीनो तक तो किसी तरह उसके दवा के खर्च का व्यवस्था हो गया लेकिन एक समय के बाद नहीं हो पा रहा था. कुंदन भी अपने परिवार पर दबाव नहीं बनाना चाहता था क्योकि उसको अच्छी तरह से मालूम था की पिता जी के पास भी अब कुछ बचा नहीं है. घर पर जो थोड़ा बहुत खेती की जमीन बिक गयी इलाज के दौरान और उसके ऊपर से दूसरे लोगों से कर्ज लेना पड़ा अलग. इस वजह से कुंदन अपने दवा में कटौती करने लगा, दो दवा बहुत ज्यादा जरूरी थी उसकी को खरीदता था बाकी नहीं लेता था जो की उसके लिए बहुत बड़ी परेशानी को दावत देने के सामान था.

उसको डॉक्टर शुरू में हर महीने हॉस्पिटल बुलाये थे जो की बाद में हर तीन महीने में एक बार कर दिया गया लेकिन पिछले 6 महीने से वो दिल्ली भी नहीं गया था क्योकि दिल्ली जाने तक का पैसा नहीं था. इस बीच वो इतना परेशान हो गया था की मेरे पास कई बार आया और बोला की कोई पार्ट टाइम नौकरी दिलवा दीजिये। कुंदन बहुत मेधावी छात्र है और पढ़ना चाहता है लेकिन पढाई और काम दोनों एक साथ नहीं कर सकता। अगर पढ़ाई पर ध्यान लगाएगा तो काम नहीं कर पायेगा और अगर काम नहीं किया तो पैसे नहीं आएंगे दवा खरीदने के लिए. और अगर काम करता है तो पढ़ाई नहीं कर सकता। दूसरी बहुत बड़ी दिक्कत ये की शारीरिक श्रम वाला काम नहीं कर सकता क्योकि किडनी ट्रांसप्लांट होने के बाद डॉक्टर मना कर चुके है. इसलिए हमसे बोला की अगर रात का भी 4 -5 घंटे का काम मिल जाए तो कर लेगा ताकि दिन में क्लास जा सके. मुझे कुछ समझ में ना रहा था की कहाँ भेजे उसे, कैसे उसका मदद कर सकें।

इसी बीच हमको एक ख्याल आया भारत सरकार की एक नयी स्कीम के बारे में जिसका नाम है प्रधानमंत्री जन औषधि केंद्र। इसको नरेंद्र मोदी जी ने शुरू करवाया था और कई बार उनको इस बारे में बात करते सुने थे. बस केवल इतना पता था की यहाँ गंभीर रोगों में लगने वाली दवाएं जो की बहुत महँगी होती है सस्ते दाम पर मिलती है लेकिन कभी किसी जन औषधि केंद्र पर व्यक्तिगत रूप न ही गए थे न ही किसी को जानते थे जो की वहां से दवा खरीदता हो. खैर, हम कुंदन को बोले नौकरी के सोचते हैं लेकिन इधर बीच एक बार जन औषधि केंद्र पर जा के अपने दवा का दाम पता करो. शुरू में कुंदन थोड़ा असहज लगा, बोला की वो जहाँ से दवा लेता है वो लोग भी उसको छूट देते हैं और उसके बाद उसकी दवा 12,000 की पड़ती है, बहुत होगा तो जन औषधि केन्द्र् से उसको 2,000 और सस्ती दवा मिल जाएगी, फिर भी वो 10,000 रुपया महीने का दवा नहीं खरीद सकता।

शुरू में लगभग एक हफ्ते नहीं गया वो लेकिन जब गया तो उसको विश्वास नहीं हुआ की जो दवा वो 3,000  खरीदता था वो उसको जन औषधि केंद्र में मात्र 142 (मात्र एक सौ बयालीस ) रूपये में मिली। उसको विश्वास नहीं हो रहा था तो वो तुरंत अपने डॉक्टर को गंगा राम हॉस्पिटल दिल्ली फ़ोन किया और उनको दवा का नाम और सब कुछ बताया और वो भी बोले के बिंदास हो कर खरीदो, कोई फर्क नहीं है. कुंदन वो दवा खरीदा और सीधा मेरे पास आया बिल ले के. इतना ज्यादा उत्साहित और खुश लग रहा था की बयां नहीं किया जा सकता, हमको बिल दिखाया और बोला की चूँकि उसका काफी बचत हुआ है इसलिए अब वो अगले एक सप्ताह में ही दिल्ली भी जाएगा डॉक्टर से मिलने क्योकि पिछले 6 महीने से नहीं जा पाया था. लेकिन एक दिक़्क़त ये हुई की कुंदन को उसकी सारी दवा नहीं मिल पायी।

कुंदन की दवा का बिल

दुकानदार बोला की चूँकि बनारस में अबतक किडनी ट्रांसप्लांट की सुविधा किसी हॉस्पिटल में नहीं है इसलिए यहाँ कोई ट्रांसप्लांट से सम्बंधित दवा नहीं मंगाता। शुरू में वो लोग मंगवाते थे लेकिन डिमांड नहीं के बराबर होने के कारण उनको दवा वापस करना पड जा रहा था. इसलिए बाकी की दवाएं उसको या तो लखनऊ या दिल्ली में मिलेंगी। वो दवा की पूरी लिस्ट देखा और बोला की ये सारी दवाएं लगभग 3 से 4,000 रूपये महीने में मिल जाएंगी जो की बहुत बड़ी बचत होगी। लेकिन हार्ट, कैंसर और बाकी असाध्य रोगों की सारी महंगी दवाएं उसके दूकान पर बाजार से 3 से 4 गुना काम दाम में उपलब्ध थी. जो दवाएं जन औषधि केंद्र से सरकार उपलब्ध करवा रही है उसमे और मार्किट में बिकने वाली दवाओं में केवल इतना अंतर है की जन औषधि केंद्र वाली दवाएं जेनेरिक दवाएं है. दवा वही होती है बस कंपनी का नाम अलग होगा और दूसरा कोई अंतर नहीं।

आमिर खान एक शो आता था स्टार टीवी पर जिसका नाम था सत्य मेव जयते, याद है? उसका एक एपिसोड इसी विषय पर था की कैसे डॉक्टरों और दवा बनाने वाली कंपनियों की मिलीभगत से महँगी दवा बेचने के खेल चल रहा है. बड़ी बड़ी कम्पनिया डॉक्टरों को मोटा कमीशन देकर अपने कंपनी की दवा लिखवाते है जिसका भुगतान असल में ग्राहक ही करता है. उस एपिसोड के बाद याद होगा आप को की कितना बवाल हुआ था, डॉक्टर लोग कोर्ट तक चले गए थे. खैर, ये खेल किसी से छुपा नहीं है, सब लोग जानते हैं इसके बारे में. लेकिन अब इसका इलाज प्रधानमंत्री जन औषधि केंद्र के जरिये संभव हुआ है. मेरा ये लेख लिखने के पीछे केवल एक ही मकसद था की जो लोग पैसे की तंगी के कारण इलाज वहां नहीं कर सकते वो इस सुविधा का बिना हिचक इस्तेमाल करें। जेनेरिक दवाओं के बारे में अधिक जानकारी के लिए सत्य मेव जयते का एपिसोड शेयर कर रहे हैं, पूरा देखिये और तस्सली मिले तो इस सुविधा का लाभ उठाइये। ये सुविधा शुरू कराने के लिए मोदी जी का ह्रदय से धन्यवाद, ये गरीबों की बहुत मदद करेगी।

 

Kidney Transplant at Ganga Ram Hospital

ये लेख मेरे छोटे भाई सामान कुंदन के किडनी ट्रांसप्लांट से सम्बंधित मेरे व्यक्तिगत अनुभव से प्रेरित है. कुंदन कुशीनगर का रहने वाला है लेकिन बनारस में रहा कर बीएचयू में पढाई कर रहा था. उसको सरदर्द की पुरानी बिमारी थी जो की एक दिन उभड़ गयी और चुकी वो बीएचयू का विद्यार्थी था और वहीँ हॉस्टल में रहता था इसलिए वो बीएचयू में ही बीएचयू के विद्यार्थियों के लिए चलने वाले डिस्पेंसरी गया दवा लेने के लिए. डॉक्टर ने उसका साधारण जांच किया जिसमे ब्लड प्रेशर बहुत गड़बड़ था. तो उसको उसको और भी कई जांच लिख दिया, जब रिजल्ट आया तो उसमे एक बहुत खतरनाक चीज सामने आयी और वो था क्रिएटिनिन लेवल जो की ५.१ पहुंच चुका था जबकि इसे होना चाहिए 0.5 से 1-1.2 के बीच जिससे ये तो अंदाज़ लग गया की किडनी से सम्बंधित कोई बहुत गंभीर बीमारी है.

उसका किडनी से सम्बंधित दूसरा टेस्ट किया गया तो मालूम चला की एक किडनी पूरी तरह ख़राब हो चुकी थी और दूसरी भी ८०% तक ख़राब हो चुकी थी. इसी बीच अभी दवा इलाज शुरू भी नहीं हुआ था की कुंदन के एक आँख की रेटिना सरक गयी और उसको एक आँख से दिखना बंद हो गया. एक २२ साल के लड़के के लिए ये जमीन फट जाने जैसी खबर थी. तुरंत उसके घर वालो को बुलाया गया. बीएचयू में इलाज भी शुरू हुआ लेकिन उसकी हालत दिन प्रति दिन बिगड़ती जा रही थी. कुछ दिनों तक तो बीएचयू ने खर्चा उठाया लेकिन उसके बाद वो भी हाँथ पीछे खींच लिए. दूसरी सबसे बड़ी परेशानी थी की बीएचयू में किडनी ट्रांसप्लांट की सुविधा नहीं थी, उसके पास केवल एक रास्ता था की वो या तो दिल्ली जाए या फिर लखनऊ जहाँ उसको बहुत पैसे की जरूरत पड़ती लेकिन परिवार के पास कुछ नहीं था.

असल में उन लोगों के पास गरीबी रेखा से नीचे वाला राशन कार्ड था. घर पर थोड़ा बहुत जमीन था खेती वाला और पिता जी भी बेरोजगार। अब सबसे बड़ी समस्या थी की पैसा कहाँ से आएगा। बीएचयू ने एक मदद किया की वो बोले की जबतक पैसे का व्यवस्था नहीं हो जाता तबतक मरीज को हम अपने यहाँ रखेंगे फ्री में लेकिन पैसे का व्यवस्था तो करना ही पड़ेगा। दिल्ली में गंगा राम हॉस्पिटल में पता करने पर मालूम चला की केवल ट्रांसप्लांट का ही खर्चा लगभग ७.५ लाख रुपया होगा। बीएचयू ने ये भी वादा किया वो लोग भी थोड़ा पैसा देंगे लेकिन पूरा नहीं कर पाएंगे। एक ही रास्ता बचा था की सरकारी मदद ली जाए लेकिन उसमे समय लगता है और समय की बहुत बड़ाई दिक़्क़त थी क्योकि कुंदन की तबियत दिन प्रति दिन बिगड़ती जा रही थी. उसके क्लास के पढ़ने वाले बच्चे बीएचयू में विरोध प्रदर्शन कर रहे थे, उनकी ये मांग थी की पूरा खर्चा बीएचयू उठाये लेकिन बीएचयू ने सीधे मना कर दिया था. एक समय तो ऐसा भी आ गया था जब कुंदन अपने आपको हॉस्पिटल के कमरे में बंद कर लिया था, बोला या तो मेरा इलाज करो या तो मुझे जान से मार दो.

उसको डायलिसिस पर रखा गया था. लेकिन लगभग लगभग सभी नसें बेकार हो चुकी थी. पहले हाँथ से  करते थे, फिर पैर से करना शुरू किये और फिर अंततः गर्दन के पास से करते थे. जब गर्दन के पास से करना शुरू  किये तो नस में पाइप लगवाने के लिए कुंदन को लखनऊ जाना पड़ता था. सोच कर भी शरीर कांप जाता है की कैसे उतनी बिमारी में वो बनारस से लखनऊ केवल एक पाइप डलवाने के लिए जाता था. मुझे अभी भी याद है की एक बार हम उसको अपने घर के पास देखे चाय की दूकान के बाहर खड़ा था, जो की मेरे लिए एक झटका सा था क्योकि उस समय उसकी तबियत इतनी ज्यादा खराब थी की सभी लोग लगभग मान चुके थे की अब कुंदन बचेगा नहीं। और उसको हॉस्पिटल से  बाहर देखना मेरे लिए बहुत बड़े अचरज का विषय था.

खैर, हम तुरंत उसके पास गए लेकिन उसकी हालत देखकर अपनी आँखों पर विश्वास नहीं हो रहा था. पूरा शरीर जबरदस्त रूप से सूज गया था और पीला पड चुका था. वो बात कर रहा था हमसे लेकिन क्या बोल रहा था कुछ समझ नहीं आ रहा था, लेकिन सुनाई उसको सब कुछ साफ़ साफ पड रहा था. तभी देखे कुंदन के पीछे उसके पिता जी भी खड़े थे. हम उनसे पूछे की कुंदन हॉस्पिटल से बाहर कैसे निकला तो वो बताये की वो खुद अपने से सारा पाइप निकाल कर हॉस्पिटल से बाहर आ गया था. मुझे अच्छी तरह से मालूम है की वो इतना ज्यादा कष्ट झेल चूका था की किसी तरह से बस उस नरक से बाहर आना चाहता था. समय बीतता जा रहा था लेकिन पैसे की व्यवस्था नहीं  हो पा रही थी. किसी तरह से उसके घर वाले, उसके मित्र और बाकी जो मेरे परिवार से हो सकता था हम लोग कर रहे थे. उसके मित्र लोग बीएचयू के अंदर और शहर में अलग अलग जगह भिक्षाटन कर के तकरीबन १.५ लाख रुपया जुटाए।

लेकिन उतने पैसे से कुछ नहीं होने वाला था और कुंदन की हालत भी दिन प्रति दिन बिगड़ती जा रही थी. अब हमलगों के पास केवल एक ही विकल्प था की जितना जल्दी से जल्दी हो सके सरकारी मदद की व्यवस्था की जाए. सरकारी मदद के लिए दो विकल्प थे- सांसद निधि और विधायक निधि। सांसद निधि से मदद मिलने में समय ज्यादा लगता है क्यंकि सबकुछ पहले दिल्ली फिर लखनऊ और फिर जिले स्तर पर पहुँचता है इसलिए लेट हो जाता है जबकि विधायक निधि सीधे लखनऊ से पास हो जाता है. इस बारे में ज्यादा जानकारी के लिए मैंने अपने बड़े भाई समान नन्दलाल मास्टर जी को फ़ोन किया जो की एक समाजसेवक है और लोक समिति नामक संस्था चलाते हैं. उन्होंने मुझे तुरंत संदीप पांडेय जी से मिलने के लिए बोला जो की उस समय बीएचयू में आईटी विभाग में पढ़ा रहे थे.

संदीप भईया से मेरा भी पहले कई बार मिलना हुआ था इसलिए कोई दिक़्क़त नहीं हुई. उन्होंने भी यही सलाह दी की राज्य सरकार से मदद लिया जाए. असल में उन्होंने ही मदद के लिए प्रार्थना पत्र अपने हांथो से लिखा और सारा कागज एकत्रित कर के ये बोला की अब जिलाधिकारी कार्यालय में आवेदन कर सकते हैं. आवेदन हो गया और अंततः लखनऊ से पैसा भी पास हो गया और वो पैसा सीधा गंगा राम हॉस्पिटल के खाते में कुंदन के इलाज के नाम पर ट्रांसफर कर दिया गया था. लेकिन अब दूसरी दिक़्क़त ये सामने आयी की वहाँ पर तारीख नहीं मिल रही थी. और इसी बीच लेट होने की वजह से वो पैसा वापस से राज्य सरकार के खाते में ट्रांसफर हो गया. जिसको दोबारा से बहुत चक्कर लगाने के बाद फिर से राज्य सरकार से गंगा राम में ट्रांसफर करवाया गया. अंततः ट्रांसप्लांट की डेट आ गयी और कुंदन को बीएचयू से गंगा राम हॉस्पिटल पहुंचा दिया गया.

इस बीच कुंदन बीएचयू में ९ महीने तक अपने जीवन के लिए संघर्ष करता रहा. उसके कष्ट को बयान कर पाना मुश्किल है, केवल वो लड़का ही अपना कष्ट समझ सकता है. खैर, बीएचयू में ९ महीने रहने का उसका बिल १३ लाख रुपया आया जिसमे दवा, डायलिसीस और वार्ड के कमरे का किराया सब कुछ जुड़ा हुआ था. बीएचयू ने उसके सारे खर्चे को माफ़ कर दिया और उसके अलावा १,६०,००० रुपया भी किया। लेकिन इस मदद से भी उसका इलाज पूरा नहीं हो पता क्योकि सरकार से केवल ४,५०,००० रूपये की मदद मिली थी जबकि गंगा राम में ट्रांसप्लांट का ही खर्च केवल ७,५०,००० रुपया था. इस बीच हम भी अपने दोस्तों से कुछ मदद लिए और अलोक, सना भाई, योगेश और कुछ एक विदेशी मित्रों ने भी कुंदन के लिए कुछ मदद किया जिससे उसका ऊपरी खर्च कुछ हद तक सपोर्ट हो सके.

गंगा राम हॉस्पिटल में ही कुंदन के पिता जी की मुलाक़ात किसी एनजीओ के एजेंट से हुई जो इनको बोला की वो कुंदन का बाकी खर्चा किसी संस्था से दिला देगा और ट्रांसप्लांट के बाद दवा में होने वाले खर्च में भी मदद करेगा जो की बहुत बड़े सुकून की खबर थी. इसके बदले वो कुंदन के पिता जी से कुंदन के इलाज सम्बंधित सारे कागज लिया और कुछ दिन बाद बाद इन लोगों को कुछ पैसा भी ला कर दिया। पूरा उसने ७०,००० रुपया दिया था लेकिन बाद में मालूम चला की वो एक ऐसे गैंग का एजेंट था जो कुंदन जैसे निर्धन परिवार वालों की मजबूरी का फायदा उठा कर अलग अलग जगहों से पैसा लेता है और उसका थोड़ा हिस्सा मरीज को देगा और बाकी अपने खुद खा जाता है. कुछ हफ़्तों बाद वो कुंदन के पिता जी पर दबाव बनाने लगा दिए हुए ७०,००० वापिस करने के लिए लेकिन इन लोगों के वापस करने के लिए कुछ था ही नहीं तो देते कहाँ से.

खैर, अंततः कुंदन का किडनी ट्रांसप्लांट हुआ, उसके पिता जी की एक किडनी लेकर। कुंदन को ३ महीने हॉस्पिटल में रखा गया था जिस बीच उसकी हर तीसरे दिन डायलिसिस की जाती थी. लेकिन इस बीच वो शुगर का मरीज हो गया और एक कान से सुनाई देना बंद कर दिया। डॉक्टर ने बोला की ये ट्रांसप्लांट का साइड एफेक्ट है जो की पूरी तरह ख़त्म तो नहीं होगा लेकिन धीरे धीरे कम हो जायेगा। अंततः कुंदन के डिस्चार्ज होने का समय आ गया लेकिन फिर वही दिक़्क़त की पैसा नहीं था हॉस्पिटल का बिल चुकाने के लिए. लेकिन गंगा राम हॉस्पिटल ने मानवता का परिचय देते हुए कुंदन के डायलिसिस का बिल माफ़ कर दिया और किसी तरह कुंदन हॉस्पिटल से डिस्चार्ज हो कर बनारस वापस आया.

डिस्चार्ज होने के बाद कुंदन को शुरू में हर महीने में एक बार दिल्ली जाना पड़ता था अपने डॉक्टर से मिलने के लिए जो की बाद में ३ महीने में एक बार कर दिया गया है. आज कुंदन स्वस्थ है लेकिन उसको बहुत सावधानी बरतनी पड़ती है जैसे की शारीरिक श्रम का काम नहीं करना चाहिए, धुल, धुँआ, प्रदूषण से बचना है. साफ़ सफाई की विशेष ख्याल रखना है ताकि किसी तरह के कोई भी इन्फेक्शन पनपने की संभावना न हो, शुगर की वजह से खान-पान का विशेष ख्याल रखना है और हाँ, दवा जिंदगी भर चलेगी। शुरू में तो लगभग ३५-४० गोली रोज खानी पड़ती थी जो की समय के हिसाब से धीरे धीर काम होंगी लेकिन कुछ दवाएं जिंदगी भर खाना पड़ेगा। और ये दवाएं सस्ती भी नहीं है, इनका खर्च लगभग १२,००० रुपया महीना पड़ता है. जैसे ईश्वर इतना कठिन समय में मदद किये वैसे ही दवा की भी व्यवस्था हो जाएगी यही प्रार्थना है. ॐ शांति।

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फिर गंगा राम में इलाज चला – अगस्त २०१६ तक    

Cancer treatment in India

Healthcare services are in terrible condition in India and especially at government hospitals. I know that the situation is not same everywhere but its same more or less everywhere in this country. Government hospitals have either no facilities or they are super corrupt and private hospitals are so expensive that a regular person can not afford them. I know several people who have paid for vaccines or medicines at government hospitals which is supposed to be free. If I just have to talk about hospitals in Varanasi, which is the biggest center for health care services in entire Purvanchal (Eastern Uttar Pradesh which includes 17 districts), very big portion of Bihar state and Madhya Pradesh is full of patients all the time.

There are several government and private hospitals in Varanasi with Sir Sundar Lal Hospital at Banaras Hindu University or BHU being the biggest one. And even at this hospital seeing serious patients sleeping on the floor under open sky, doctors being not available or treatment being evil is never ever a big deal. I have heard of so many complaints where people say their patients just died because of bad services at BHU. In fact I have also personally experienced similar kind of behavior when I was there with a patient of four years whose head was broken, he was bleeding so hard and there was no doctor in the emergency ward. And when treatment started they did not have stitches. Anyways, it is still the biggest hospital of eastern UP and very big hope for a lot of people.

My most recent encounter with this hospital was when my mother noticed a small lump in her breast. We contacted a few doctors at some private hospitals or at doctor’s personal clinic and different ones had different opinion. But most of them said that it might be beginning stage of breast cancer and they will have to remove the whole breast which will be followed by radiation therapy and chemo might also be needed. It was a huge shock for me to hear that someone might be suffering with cancer in my family. Although my mother was absolutely fine with no pain in body or she just did not have any problem at all. I contacted many people and every one suggested me to at least see some doctors at BHU. We contacted oncology department at BHU and they advised FNAC test with mammography x-ray.

The results showed that my mother was suffering from first or second stage of cancer. I had no idea what to do. I was talking with many people, different ones had different opinions but most of them said that I should follow what doctors say at BHU. There is another cancer research hospital run by Indian Railways which is also kind of very famous in the area. A lot of people advised me to see the doctors there but I always had one thing in my mind I won’t start any treatment before getting advise of doctors at Tata Memorial Hospital in Mumbai. Tata Memorial Hospital is most probably the most famous cancer hospital in India. My mind had almost stopped working, I did not know what to do and there was a time when I thought that lets see what the doctors say at Railway hospital and I was preparing to go there.

At the same moment a friend of mine came at home and I told him that I was thinking to see the doctors at Railway Hospital today and then go to Mumbai tomorrow to see the doctors at Tata Memorial. But then he told me that if I am already planning to see the doctors at Tata Memorial why to even waste a day. Why not go there today. I also thought that I should not waste a day and I immediately arranged to travel to Mumbai. I have a few friends (I was expecting help especially from Alok and Yogesh) living in Mumbai and I informed them my mother’s situation and in fact one of them happened to know a doctor personally at TMC. Somehow Mr. Arun Pathak, who is like my elder brother and he is a social worker and a politician in Varanasi, also heard about my situation and immediately arranged my stay in Mumbai at an apartment which he had rented for himself.

When I arrived in Mumbai Yogesh came to pick me up from the airport and dropped me at his place. At the same time Mr. Pathak wanted me to stay at his place which was the biggest luxury possible in a city like Mumbai where hundreds of thousands of people have to sleep on the street but I had two apartments to live there. I spent a few nights at Mr. Pathak’s place. I arrived in Mumbai without my mother and went to TMC but unfortunately the doctor my friend knew was basically dealing with mouth cancer. So we could not see him. Anyways, everything seemed super organized at TMC. I was really amazed by hospital management: everything seemed to be working in order, staffs were very helpful, all the services were computerized, things working very smoothly, it seemed like a hospital which had some sense of hospital management and care for patients.

They looked at the FNAC and mammography report and asked me if I would like to get treatment started at TMC or if I just needed advise. I don’t know why but I said that I need the treatment. There were two categories of registration – general patients and private patients. If I get registered under general patients category then the cost of the treatment was going to be ten times cheaper than if I get registered under private patient category. They mentioned it clearly at that same moment that there won’t be any discrimination or different in treatment whether I get treatment under general patient category or private patient category. The only different would be of the rooms. The rooms of patients under general category are basically shared basis whereas rooms for patients under private category are private. Doctors are same, treatment is same…everything same but some luxury.

They provide bed only when the treatment is happening like during surgery or when chemo is being given for two three hours. Rest of the time the patients have to take care of themselves and I literally saw hundreds of people sleeping on the street outside the hotel who were there go get treatment. Those people would go to the hospital whenever it was needed otherwise street was their home for rest of the times. Sometimes they just live on the street for the entire duration of the treatment which might be even six-seven months or even more. The hospital also gave me an idea about the cost of the treatment immediately which was around 30,000 if I get treatment under general category or around 2,50,000 if I get treatment under private patient. I thought for a while and chose the private category.

My mother had always lived a very relaxed life and I did not want her to be in any kind of stress. Although the cost of the treatment was out of my budget because it was not only about paying for the treatment but I knew that traveling between Mumbai and Varanasi and other expenses were also going to be there. But I still made the decision of getting the treatment under private category. They registered me and sent me to the breast cancer department. There was a very big line but again everything was very well organized so it was not a big deal because at least I knew what was happening. Finally my number came, I was really scared because I did not know what the doctor was going to tell me, and finally entered in a room where I saw a lady doctor waiting for me.

There was something really good that they see only one patient at a time and give proper time otherwise at BHU there is one doctor surrounded by hundreds of patients and you just don’t know whats happening. The doctors saw all the reports and stared asking some questions related with my mother which I did not know. I asked her if she would like to talk with her on phone but she denied. Anyways, I called my mother on phone and tried to answer her questions. The doctor said that she would like to see the patient and without meeting the patient it won’t be possible for her to say anything. She said that in some case doctors might advise or give some suggestions but in case of breast cancer it is necessary to see the patient personally because it is necessary to feel the lump and size of breasts also matter which they need to see. Finally I arranged my mother to come to Mumbai and brought her to the hospital after a couple of days.

The doctors looked at all the reports, examined my mother personally and advised a few blood tests with biopsy. They said that FNAC was not enough and biopsy test was also needed. And in any case they were not going to rely on BHU test reports if we wanted the treatment there. So actually they advised so many different blood tests and during the same time they also advised us to meet with the radiation therapy doctor. We saw the radiation therapy doctor also, she also looked at the lump and said we had two options- either have the full breast removal followed by chemo and radiation therapy or just get the lump removed followed by the chemo radiation. I did not know what to do and I asked her for some time. We contacted some other doctors and all of them suggested us that let the doctor make the decision. During this time we got biopsy and other tests done.

And when we went to see the doctor again they said that a surgery will be performed and since the lump was not so big it is also possible to just remove the lump and not the entire breast. They again gave us an opportunity to get the surgery done at TMC, have medical protocol prepared by the doctors at TMC but have rest of the treatment like chemo followed by other doctors at BHU because it could have been easier for us. When doctor gave us this option my mother was also present there who immediately refused it because she had also seen the condition at BHU. She wanted to get the treatment at TMC only. By this time everything was almost clear but there was only suspicion regarding chemo cycles. The doctors said that final decision will be made after the surgery is done because the number of chemo cycles are decided based on the reports of lymph nodes checkup which are done during and post surgery.

They gave us two options- either we get surgery done at TMC after three months because there were already so many patients in line or we get the surgery done within a week at their another research center located in Kharghar, Navi Mumbai. This other center is also run by the same team but only the location was different. It was around 40 KMs from the old hospital. This new center of TMC was opened in Kharghar in the year 2002 and it was called Advanced Center for Treatment, Research & Education in Cancer. I was still a bit confused and did not want to miss any opportunity of taking advice of as many people as people. One of my friends relatives in Mumbai suggested me to see the doctors at a charitable hospital located in Mumbai called Millat Hospital.

I decided to at least see the doctors at Millat and see what they say. When I met with the doctor there, he also said that surgery will  be done, chemo will  be needed with radiation therapy. But they did not have radiation therapy available at Millat. Finally we made a decision that we will get all the treatments done at TMC only. We contacted the doctors at TMC and agreed on getting the surgery done at Kharghar center. They prepared all the papers and transferred the case at Kharghar center. At first I went to Kharghar with a friend of Yogesh named Ashish who always a very big help. The biggest benefit of having Ashish was that he used to have his own pathology which meant he had some knowledge of medical field and other than that he was also a Marathi which means he could speak local language which is always a very big help.

And in any case it is very hard to find people like Ashish who are always willing to help others. He was not only helping to me but whoever wanted. I noticed him several times just going to unknown people at the hospital and asking them if they needed some help. Anyways, the doctors at Kharghar center said that they could perform the surgery in next four days. They gave me a date and asked me to bring the patient the evening before of surgery and get her admitted at the hospital. Finally I arrived at the hospital the evening before, doctors checked my mother and then the biggest blunder happened. They did not have any private room available, which the patients registered under private category are supposed to get. It was not possible for me to travel back home then return back at the hospital the next day at 7 AM because the traffic in Mumbai was crazy.

They asked me to sleep at the hospital guesthouse which is basically lodging facility patients getting treatment under general category which did not seem to be a big issue and we thought that we will sleep overnight there. After all it was only about a night but once we arrived at the guesthouse room I said to myself that it was not the place where my mother could sleep. The biggest problem was that there were eight beds at a distance of hardly two feet from each other in one room and all of them had patients whose surgery was already performed. Most of them had either mouth or throat cancer and would was visible. I had full sympathy for the patients but I did not want my mother to be scared of surgery or be stressful the night before her surgery.

I think they should keep the pre-surgery patients separated from post surgery patients because the cancer wounds are very scary and it might scare the patients going to get surgery. The other problem, which was the biggest, was that the windows of the room were kept closed intentionally so that already sick patients do not feel cold. There was terrible smell of medicine without any ventilation in the room. I saw at my mother’s face, she did not say even a single word but I knew that she was not comfortable at all. I immediately decided that I was not going to stay there over night. Fortunately I had another friend from Varanasi who was in Mumbai those days and he had a relative living somewhere in Kharghar. I called him and explained the situation at the hospital and finally he arranged for us to sleep overnight at his relative’s place which was happened to be hardly 10 minutes drive from the hospital. It was such a big help.

Anyways, I could not sleep the whole night because I was tense about the surgery the next day. I was just laying down and thinking about the next day and suddenly I noticed the sunlight. I prepared myself and we headed for the hospital. The doctors did some basic tests and asked us to wait outside the surgery room. During this time different doctors and nurses were coming, asking us different questions and one of them asked us what patient has eaten or drank since morning. My mother had nothing other than a tea but when I informed her about it, she asked milk tea? I said and then they said that we have to wait for another four hours minimum because the tea my mother had contained milk which is a solid food product as per their science. And if there is any food in the stomach then it can cause serious respiratory problems during the surgery.

Actually the doctors had advised my mother the evening before to not eat anything after walking up on the day of surgery but we did not think that milk could also be a problem. The doctors sent me to deposit the surgery fee which was kind of unexpected. They asked me to deposit 50,000 immediately. I had around 20,000 in cash with me and hardly 40,000 in the bank account. The worse thing was that sometimes ATMs do not allow to withdraw more than 25,000 a day. Anyways, somehow it worked, I had money and I deposited it. By the time I returned back at the surgery room, my mother was already inside the operation theater. The doctors had told me that there are two kinds of radiation therapy- internal and external. Internal radiation therapy can be given in case if the lymph nodes are not infected with cancer cells and they might at least put a tube inside the breast during surgery for internal radiation if the case was in favor.

In case if the lymph nodes are also infected then only external radiation was the possibility. The doctors told me that they take a tiny peace of flesh from the lymph node and send it for testing while the surgery is going on, which is basically just a quick checkup, which only gives a quick sense whether lymph nodes are infected or not. The final treatment is planned only after the detailed report which might take up to a week.  The doctors had also said that the final decision about whether to remove the whole breast or just the lump will also be made during the surgery after seeing the level of infection. I think it was the most tense moment of my life when I was sitting outside the operation theater waiting to hear anything regarding what was going on inside. Suddenly a doctor came and said that they have sent the lymph node samples to the lab and the result will come soon and they will inform us.

And then another doctor came and he said that there was no need to remove the whole breast because lump was not so big and the infection was also not serious but the internal radiation was not possible because there was some infection in the lymph nodes. They also said that in such case chemo might be needed, 90%, the final decision will be made once the detailed report has come. By this time my elder brother, Chandan, also arrived from Delhi which was actually a very big psychological support for me otherwise I was going crazy. Chandan is a very matured man and deal such situations better than me. Finally the surgery was finished and I they brought my mother outside the operation theater but she was still kept on the other side of a glass door. I saw her sleeping, actually she was fainted due to anesthesia. Now they asked us to bring some medicine from the dispensary.

Something that I liked about this hospital a lot is that there was no cheating. They make a smart card for all of the patients, when doctors prescribe any medicine then the data is  automatically entered into the smart card. Money is also deposited in advance in the smart card. You just go to the dispensary, put the smart card on a card reader, the people at the counter know what medicine to give, money is also automatically deducted from the smart card, very nice system. Otherwise at BHU it is a very famous scam, and everyone is aware of it, that the doctors give you a list of medicine the evening before of surgery but the real drama starts while the surgery is going on. Different nurses and staffs come, give you a peace of paper and ask you to bring more medicines. They pretend to be in hurry and very serious which is nothing other than an emotional blackmailing.

People have no idea what these medicines are for and its a very human thing that nobody would question those nurses. Families want to do their best by having faith on the doctors and other staffs but in fact they are cheated and looted. Later all those medicines are sold. And its not only the case at BHU but at all the other government and private hospitals in Varanasi and in other cities. Two years ago one of my friends father needed a heart surgery and the nurses at BHU told us that they had all the medicines available with them at the hospital which they were willing to sale for half the printed rate. This is how they use those extra medicines that they get from the patients family while the surgery was going on. Luckily there was no such system at TMC.

Finally we brought all the medicines for my mother and by this time she was already shifted to ICU. The doctors kept my mother under observation for 24 hours and then discharged her from the hospital and advised to see the doctors at the old center of TMC in Mumbai after a week. They had also implanted a surgical drain to drain out the fluid of the wound and we were supposed to have a written record of how much fluid was drained everyday. She was taking medicines, getting better everyday and finally the surgical drain was also taken out after fifteen days or so.

My mother was called at the hospital the very next day of the surgery for a physical exercise training session. In my opinion it was not only for physical exercise but it was also to boost up the moral of the patients through psychological training. They taught some physical exercises to my mother and other than that there were a few volunteers who shared their stories and I think that was very important. They were basically telling all the positiveness about their treatment which helps a lot to prepare the patients for the treatment. By this time the detailed report of lymph node test was also available and doctors had an idea about the treatment. They advised us several other tests which also included whole body bone scan and CT scan.

There is always a very big line for any service at TMC because they have patients have from over India, in fact from out of India as well. Hence the line for bone scan and CT scan was also very big. We got the date for bone scan after five days but nearest date available for CT scan was after 18 days. There was a possibility of getting these tests done at some other hospital but we did not want any excuse so decided to get the test done only at TMC. And in any case my mother was on other medicines and it was not urgent to get those tests done. Finally both of the tests were done, we contacted the doctors again, they looked at the reports and prepared the final medical protocol.

They advised eight cycles of chemo therapy (with two different medicines, four each) at an interval of every twenty days and twenty cycles of radiation therapy with Linear accelerator technology. They have advised five sittings of radiation therapy each week which means it will take around one month. After planning the medical protocol they again asked us if we would like to continue the treatment at BHU but again my mother refused it. By this time she was scared of BHU because during these days she met so many other patients who came from either Bihar or eastern UP (where we come from) and most of them had similar stories that they got their first treatment in their own cities of Bihar or other cities of eastern UP, the doctors immediately removed both breasts, gave several chemos and finally said that the situation was not under their control and they should see the doctors at BHU. And when these patients went to BHU then their case was refereed to TMC.

The other option for us to get treatment away from Mumbai was Delhi because my elder brother lives there. Mumabi was not a big problem for us but it is always the best to live with the family. So we were looking for options where my mother could stay with the family while getting treatment. My elder brother, Chandan, contacted AIIMS in New Delhi but there was a very big problem that the line to get treatment was very big, our number would have come after six months or so. Another thing was that the doctors and other staffs at AIIMS, whom my brother knew personally, said that they did not understand the reason behind bring the patient from TMC to AIIMS when it was possible to get treatment there. They said that TMC is so better than AIIMS that when any case is out of their control then they send their own patients at TMC.

They said that the best thing with TMC is their huge research data which in fact no other hospital in this country has. The other option of getting treatment in Delhi was at some private hospital. Chandan contacted a very big private hospital near to his home called Dharamshila Hospital in Noida. We were shocked to hear that the treatment there was around ten times more expensive than at TMC. The cost of chemo medicines at TMC was around 8,000 each but the cost of the same medicine at Dharamshila was around 60,000 each + other expenses like room charges, doctors fee etc. The cost of radiation therapy at TMC was around 25000 but the cost of the same radiation therapy at Dharamshila was around 2,00,000. Many people told us that these private hospitals always tell you less amount, if they are asking for 7,00,000 then their total final bill would never ever be less than one million.

It was insane, how come someone could be this selfish. Anyways, after reviewing everything we realized that TMC was the best option possible for us and we decided to get proceed with the treatment there only. Anyways, we contacted the doctors again at TMC and informed them about our decision but I still had suspicion in my mind about how chemo would react on my mother’s body who was 67 years old. I asked the doctors about it and just like any other time they gave me proper time and explained everything. They said that age does not matter in getting chemo. The thing which matters the most is the general health of the patient and my mother was perfectly fit. She did not even have diabetes or high / low blood pressure. The doctor said that sometimes they give chemo to even 80 years old person if he is fit and sometimes they can not give chemo to even a twenty years old one if he has health issues.

It was very relaxed feeling to hear getting chemo was not a complicated issue in my mother’s case. Finally they gave all of the dates for chemo and radiation. The date of first chemo came, we arrived at the hospital, deposited the money and proceeded with the medical procedure. The first thing that happens on the day of chemo is a blood test which is called CBC (complete blood count) which is basically a general test that gives information about the cells in the blood. Just like any other service at TMC, the result of this test also takes around 4 hours and we have to meet with the doctors who examine the blood test and then approve getting chemo. After getting approval of the doctors we had to go to the ward where they give chemo. Here the process was not so long, it took around an hour of waiting so that they could prepare the medicine.

In most of the cases chemo is given as an infusion into a vein and my mother’s chemo was also given by inserting a tube with a needle into a vein in her arms. The first chemo was kind of fast, it took hardly 30 minutes and now the doctors asked us to take patients back home. They advised us to see them back after a week. They said that the most common side affects of the medicine given to my mother were upset stomach, vomiting, nausea, constipation, diarrhea, headache and hair loos. They also gave her medicines for upset stomach but advised to not start it if it was needed. Since it was the first chemo they wanted to see how her body was reacting. The first twenty hours were absolutely fine, she was just like any other day but then she felt some problems which were not so big. A little bit of stomach ache sometimes and cramps.

When we saw the doctors after a week they said that was a very normal side affect and there was nothing to worry about. She also started to feel better everyday and finally we brought her back to Varanasi after a week. We did it only because we wanted to her to live close to her friends and family rather than getting bored with my friends in Mumbai. Other side affects were gone but one thing was constant- loosing the hair and the speed was really rapid. We also had to change her diet completely. The doctors advised us to give food full of fiber mostly. We sent her back to Mumabi again a day before the next chemo. The next chemo was also done last the first one. CBD first, then doctors approval and then chemo. But this time my mother made a mistake because of some confusion. She did not take the medicine which was given to her for upset stomach. She was taking some other medicine and the result was serious upset stomach with ache and nausea. 

She was living with my friends and I was in Varanasi because my friends had told me that they would take care of her and I did not need to be present in Mumbai. Actually I make most of my by working in tourism which is a seasonal business in Varanasi and my friends advised me to at least work so there is no problem in finance hence I had sent my mother alone to Mumbai and was hoping my friends to take care of her. Our plan was that she would go to Mumbai, get chemo with help of my friends and then return back to Varanasi after three-four days. Suddenly she called on the third day after getting chemo that she was not feeling good at all. She had serious cramps in her stomach all the time. I went to Mumbai the very next day, spoke someone at the call center of TMC and they asked me if she was taking both of the medicines. I asked my mother the same and she said that she took only one of them.

She had left the one which was good in case of upset stomach. Those people at TMC advised me to give her that medicine. She took the medicine that night and she was absolutely fine the next day. So the whole mistake was that she did not take the proper medicine. After getting second chemo we could easily see how she was loosing her hair very fast. Finally four cycles of first medicine were completed in total of twelve weeks (each chemo is given at an interval of three weeks) and we realized that she does not feel anything abnormal for first twenty four hours, everything stays normal but the she starts getting side affects which could be avoided if post chemo medicines are taken properly. She was a bit sick for a few days and then she was fine, she traveled between Mumbai and Varanasi during the gap between two chemos. In fact she also went to Delhi and Pune once so traveling and staying away from Mumabi was a good decision.

And finally the fifth chemo came when the medicine was going to be changed. I was again worried this time as I did not know how her body would react to this different medicine. Rest of the procedure was same but since the medicine was different, it also took longer than the first four ones. The first four ones hardly took 30 minutes each but the fifth one took almost two hours. They said that the quantity of medicine is same but this one is given slowly. The side affect of this medicine was also different and since it was a different medicine the doctors asked bring the patient back at hospital after a week for followup which means we could not bring her to Varanasi this time.

The doctor said that the side affect of this medicine would be mostly pain in the muscles and it was exactly the same. My mother did not feel any problems with her stomach but felt serious pain in her body, mostly in the legs, around 24 hours after the medicine was given. Since they wanted to see the side affects they did not gave any medicine. They said if there is any problem bring the patient immediately to the hospital. And this pain was so strong that my friends had to bring my mother at the hospital only on the third day after chemo. They again gave two different pills and it was all right. She is getting her sixth chemo today in Mumbai and I hope that it will be all right. Now there are two more chemos left and then radiation therapy will start from 29th of February.

My mother first noticed the lump in her breast sometime in the last week of July and I went to Mumbai on the 12th of August. Its already 11th of January today and my whole experience dealing with this situation was sometimes full of anger, sadness, hopelessness, confusion, weakness, stress and sometimes it was full of hope, satisfaction and strength. I was hopeless, angry, sad and confused until I was in Varanasi consulting BHU or other doctors in my city but I was full of hope and satisfied as soon as I arrived at TMC. The only time I was not comfortable at TMC was when they asked me to sleep at their guesthouse in Kharghar the evening before surgery. The helping behavior of my friends, especially Yogesh, Ashish, Alok and Babu,  gave me so much strength that really helped me and my family to deal with this hard time. Mr. Arun Pathk’s generosity of providing his apartment in Mumbai and his cousin (Sandeep) welcoming and helping nature was also huge help for me.

I will never ever forget all the help of my friends. In Hindu philosophy we have a belief that owe something to someone but can not repay in this life then you do it in your next life and I am sure that I can not repay my friends in this life for sure, especially to Yogesh. Maybe I will have to be reborn, maybe more than once, to repay only my friends. Since the treatment is still going on, the article does not finish here. I will be keep writing experience of dealing with this situation and my only intention behind writing this post is that others might also get benefited otherwise I usually never write about my personal stories. But I have advise for anyone seeking cancer treatment that if you do not have money to go to really big private hospitals then don’t waste your time, just go to TMC and they will take care you. There is no one better than them.

 

कैंसर का ईलाज

मैंने कई बार सोचा की मुझे हिंदी में भी कुछ लेख लिखना चाहिए लेकिन पता नहीं क्यों मैं ये काम कभी नहीं कर पाया I अन्ततः मुझे एक ऐसा सुनहरा अवसर मिला है, जिसे असल में मैं अवसर से ज्यादा अपना दायित्व समझता हूँ, जब मैं अपने आपको ये लेख लिखने से रोक नहीं सका I इस लेख के द्वारा मैं कैंसर के ईलाज सम्बन्धी अपना अनुभव साझा करना चाहता हूँ I असल में मेरी माता जी को ब्रैस्ट कैंसर (स्तन का कैंसर) है जिसका ईलाज अगस्त २०१५ से निरंतर चल रहा है. इस दौरान मैंने बनारस में बी एच यू से लगाये दिल्ली के एम्स, बम्बई के टाटा मेमोरियल एवं इनके अलावा कई और सरकारी और प्राइवेट अस्पतालों का चक्कर काटा I अन्ततः मुझे एक सही दिशा मिली और मेरी माता जी का ईलाज आज सफलतापूर्वक चल रहा है I इस लेख को लिखने के पीछे मेरा केवल एक ही मक्सद है की जिस तरह मैं परेशान हुआ, और मुझे ये भी मालूम है की हज़ारों लाखों लोग मेरी तरह है, वैसा किसी और को परेशान न होना पड़े I

मुझे पता है की आज प्रतिदिन कैंसर से पीड़ित रोगियों की संख्या बढती जा रही है और हमारे देश भारत में, ख़ास कर के, उत्तर प्रदेश और बिहार जैसे राज्यों में इस रोग के ईलाज की कोई समुचित व्यवस्था नहीं है I मेरी माता जी से सर्वप्रथम जुलाई में अपने छाती के उपरी हिस्से में एक छोटी सी गाँठ को महसूस किया I उनको न कोई दर्द था और न ही कोई दूसरी परेशानी I हम लोगों ने सोचा की शायद कोई साधारण सी दिक्कात होगी और हमने उन्हें एक महिला के डॉक्टर के पास भेजा I उस महिला डॉक्टर ने बोला की हमे    बी एच यू में कैंसर विभाग में दिखाना चाहिए I जैसा की हम सब लोग जानते हैं की बी एच यू पूरी तरह से दुर्व्यवस्था से भरा हुआ हॉस्पिटल है इसलिए हम वहां नहीं जाना चाहते थे I बी एच यू  के ही एक रिटायर डॉक्टर है जिनका नाम है डॉक्टर शुक्ला, हमने उनको पहले दिखाना उचित समझा I डॉक्टर शुक्ला ने बोला की हमलोगों को पहले मेमोग्राफी नाम का एक एक्स-रे करना पड़ेगा जिससे की गाँठ की सही स्थिति का पता चल पायेगा I

मेमोग्राफी करने के बाद जब हमलोग वापस डॉक्टर शुक्ला के पास गए तो उन्होंने हमे दो विकल्प दिया- या तो हम बी एच यू  में ऑपरेशन करा लें और वही पर किमो भी कराये या तो वो किसी प्राइवेट हॉस्पिटल में अपने संरक्षण में ऑपरेशन करवाएंगे और बी एच यू  में किमो I उनके कहने का साफ़ मतलब था की ये केस कैंसर का हो सकता है I कैंसर नाम का शब्द सुन कर ही हम लोग अन्दर से एकदम डर गए थे, समझ में नहीं आ रहा था की क्या किया जाए I इसी बीच हमारे एक पडोसी, जो की बी एच यू के कई डॉक्टरों को व्यक्तिगत रूप से जानते थे, मदद के लिए आगे आये I उन्होंने हमे बी एच यू के कैंसर विभाग में कई डॉक्टरों से मिलवाया I बी एच यू के डॉक्टर लोगों ने कुछ एक टेस्ट कराने के लिए कहा जिनमे से एक था FNAC I ये टेस्ट कैंसर के सेल्स की जानकारी प्राप्त करने के लिए किया जाता है I FNAC के रिपोर्ट में ये बात स्पष्ठ हो गयी की मेरी माता जी को शरुआती दौर का कैंसर था I ये सुन कर तो मेरी रूह काँप गयी, मुझे कुछ नहीं समझ में आ रहा था की आगे क्या किया जाये I

बी एच यू के डॉक्टर्स का कहना था की हो सकता है दोनों छातियों को पूरी तरह से निकालना पड़े और उसके बाद किमो और रेडिएशन (जिसको हम देसी भाषा में सेकाई भी कहते है) करना पड़े I मुझे अभी भी इस बात पे विश्वास नहीं हो रहा था की मेरे परिवार में किसी को कैंसर हुआ है I मैंने बनारस में कई और प्राइवेट डॉक्टर्स से संपर्क किया लेकिन लगभग सभी के सभी एक ही बात कहते थे I बनारस में कैंसर के ईलाज से सम्बंधित बी एच यू के बाद यदि किसी दूसरे हॉस्पिटल का नाम यदि कोई जानता है तो वो है रेलवे का कैंसर हॉस्पिटल I मुझसे कई लोगों ने बोला की मुझे एक बार वहाँ के डॉक्टर्स से भी मिलना चाहिए I लेकिन एक नाम जो मेरे दिमाग में हमेशा से था वो था मुंबई का टाटा मेमोरियल हॉस्पिटल I मैंने ये निर्णय ले लिया था की चाहे कुछ भी हो जाये हम बिना टाटा मेमोरियल के डॉक्टर्स से सलाह लिए बिना कोई ईलाज नहीं शुरू करेंगे I एक दिन मैं रेलवे हॉस्पिटल जाने की तैयारी कर रहा था की तभी मेरा एक मित्र आया माता जी का हाल-चाल पूछने के लिए और मैंने उसे बताया की आज मैं रेलवे के हॉस्पिटल जा रहा हूँ I

मैंने उसे टाटा मेमोरियल जाने के संभावनाओं के बारे में भी बताया I उसने मुझसे पुछा की टाटा कब जाना चाहते हो, मैंने बोला कल I तब उसने बोला की अगर कल जाना चाहते तो आज ही क्यों नहीं, एक दिन व्यर्थ करने का क्या मतलब? मुझे उसकी बात बहुत सही लगी और मैं तुरंत मुंबई चला गया I मुंबई में मेरे कुछ बचपन के दोस्त, अलोक और योगेश, रहते है और मैं उन्ही लोगों के भरोसे मुंबई जाने वाला था I मैंने उनलोगों को फ़ोन किया और उन्होंने भी बोला की तुरंत चले आओ I मुंबई पहुचने के बाद योगेश ने बोला की वो व्यक्तिगत रूप से किसी डॉक्टर को टाटा में जानता है और मुझे उनसे मिलवायेगा I अन्ततः मैं टाटा मेमोरियल हॉस्पिटल पंहुचा और वहां पहुचने के बाद मुझे मालूम चला की जिस डॉक्टर को मेरा मित्र जानता था वो मुह के कैंसर के डॉक्टर थे तो इसलिए मेरा उनसे मिलने का कोई औचित्य नहीं था I खैर, टाटा मेमोरियल शुरू से ही जबरदस्त व्यवस्थित हॉस्पिटल लगा I असल में मैंने कभी भी उस तरह का हॉस्पिटल नहीं देखा था I

सब कुछ निहायत व्यवस्थित था, लोग एक दूसरे का मदद करने वाले थे, अगर आप किसी को कुछ बोले तो लोग सुनाने को तैयार थे नहीं तो अगर कोई बी एच यू चला जाए तो जैसे लगता है की हम वह भीख मांगने गए हो I टाटा मेमोरियल की दो इमारतें हैं- एक पुरानी जहाँ आज कल ज्यादातर टेस्ट वगैरह होते है और दूसरी है नयी इमारत जहाँ पर ज्यादातर OPD हैं I मैं इमारत में था और वहां सर्वप्रथम मैं पूछ-ताछ काउंटर पे गया I उन्होंने ने बी एच यू की सारी रिपोर्ट्स देखीं और मुझसे पुछा की क्या मैं केवल डॉक्टर से सलाह लेना चाहता हूँ या मुझे टाटा में ही ईलाज भी करवाना है I शुरू में मैंने बोला की मैं केवल सलाह लेना चाहता हूँ तो मेरा पंजीकरण करके मुझे ब्रैस्ट कैंसर विभाग में डॉक्टर के पास सलाह लेने के लिए भेज दिया जिसका फीस पंद्रह सौ रुपया था I OPD में बहुत ज्यादा भीड़ थी लेकिन चूँकि सब कुछ व्यवस्थित था इस वजह से कोई बहुत ज्यादा परेशानी नहीं हुई I

शायद दो-तीन घंटे बाद मेरा नंबर आया और जब मैं डॉक्टर के कमरे में गया तो वह मेरे और डॉक्टर के अलावा और कोई नहीं था I ये बात मुझे बहुत अच्छी लगी नहीं तो बी एच यू और दूसरे सरकारी हॉस्पिटल में हमेशा डॉक्टर्स के अगल बगल चिड़ियाघर सरीखा माहौल रहता है I वहां मौजूद महिला डॉक्टर ने बी एच यू के सारे रिपोर्ट्स को देखा और फिर मेरी माता जी के जीवन के बारे में कई सवाल पूछने लगी I उनमे से कई का उत्तर मुझे नहीं मालूम था तो मैंने तुरंत बनारस फ़ोन कर के उन प्रशनो का जवाब देने का कोशिश किया I अन्ततः डॉक्टर ने मुझसे बोला की मुझे माता जी को मुंबई बुलाना ही पड़ेगा I डॉक्टर का ये कहना था की कुछ परिस्थियों में डॉक्टर केवल रिपोर्ट के आधार पर सलाह दे सकते हैं लेकिन यदि महिलाओं में छाती का कैंसर है तो मरीज को देखना आवश्यक हो जाता है क्योकि डॉक्टर को गाँठ को छु कर महसूस करना जरूरी होता है इसके अलावा स्तन का आकार देखना भी बहुत जरूरी होता है I

मैंने अपनी माता जी को अगले दिन ही मुंबई बुला लिया और उसके अगले दिन टाटा लेकर गया I डॉक्टर ने मेरी माता जी का परिक्षण किया जिसके बाद उन्होंने बोला की इसमें ऑपरेशन तो करना ही पड़ेगा और आगे का ईलाज कुछ टेस्ट हो जाने के बाद पता चलेगा I उन्होंने मुझे दो विकल्प दिए- या तो मैं टाटा मेमोरियल, लोअर परेल में तीन-चार महीने बाद ऑपरेशन कराऊं और या नहीं तो टाटा मेमोरियल का ही एक दूसरा सेण्टर, जो की नवी मुंबई के खार घर इलाके में है, वहां अगले हफ्ते ही करा लूं I वह डॉक्टर्स ने कहा की दोनों सेण्टर एक ही है, दोनों के डॉक्टर्स एक ही है केवल जगह अलग अलग है I उनका कहना था की लोअर परेल में भीड़ ज्यादा होने के कारण एक नया सेण्टर २००२ में नवी मुंबई में भी शुरू किया गया है I शुरुआत में मुझे ये बात समझ में नहीं आई लेकिन बाद में इन्टरनेट पर रिसर्च करने के बाद और कई दूसरे लोगों से पूछने के बाद ये बात तो साफ़ हो गया की दोनों सेण्टर एक ही है I

चूँकि अब ये बात स्पष्ठ हो चुकी थी की हमलोगों को सारा ईलाज टाटा में ही कराना था इसलिए वहां रजिस्ट्रेशन कराना भी जरूरी था I सर्वप्रथम मैं पूछ-ताछ काउंटर पे गया जहाँ उन्होंने मुझे ईलाज और उससे सम्बंधित सभी खर्चों के बारे में जानकारी दिया I टाटा में मरीजो का दो श्रेणियों में पंजीकरण किया जाता है – १- जनरल और २- प्राइवेट I जनरल और प्राइवेट मरीजों का ईलाज एकदम एक ही तरीके से बिना किसी भेदभाव के किया जाता है लेकिन सुविधाओं में और खर्च में अंतर होता है I यदि कोई प्राइवेट श्रेणी में अपना पंजीकरण करता है तो उसका ईलाज जनरल श्रेणी वाले मरीज से तकरीबन दस गुना महंगा होगा I असल में टाटा मेमोरियल में भारत सरकार के परमाणु उर्जा विभाग के द्वारा सब्सिडी प्रदान की जाती है जो की प्राइवेट श्रेणी के अंतर्गत आने वाले मरीजों को नहीं मिलती है I उन्होंने बताया की अगर मैं मरीज का पंजीकरण जनरल श्रेणी में करूँगा तो ईलाज का खर्च तकरीबन ३०,००० रुपया होगा और अगर मैं प्राइवेट श्रेणी में पंजीकरण करूँगा तो ईलाज का खर्च तकरीबन २,५०,००० रुपया होगा I

मैंने बहुत सोचने के बाद माता जी का पंजीकरण प्राइवेट श्रेणी में करा दिया I मुझे मालूम था की मेरे लिए ये बहुत बड़ा खर्चा होगा लेकिन फिर भी मैंने यही रास्ता चुना I टाटा हॉस्पिटल के हाल में कई एटीएम सी दिखने वाली मशीन थी जो असल में पंजीकरण करने वाली मशीन थी और सभी लोगों को उस मशीन में अपने से मरीज के सम्बंधित जानकारी डालना जरूरी था I जानकारी डालने के बाद मशीन एक पंजीकरण नंबर दे देती है जिसको ले कर वह काउंटर पर मरीज के साथ जाना होता है और उसी नंबर के आधार पर मरीज का पंजीकरण किया जाता है I सारी जानकारी पूछने के बाद हमलोगों को एक स्मार्ट कार्ड दिया गया जिसे हमेशा साथ में रखना जरूरी होता है चूँकि इसी स्मार्ट कार्ड में मरीज के बारे में सारी जानकारी होती है और इसी स्मार्ट कार्ड में ईलाज का सारा पैसा भी जमा किया जाता है I

इसी बीच ऑपरेशन के डॉक्टर ने हमसे कई टेस्ट कराने के लिए कहा जिनमे से कुछ टेस्ट पहले ही बी एच यू में किये जा चुके थे जिसका रिपोर्ट हमारे पास था लेकिन टाटा के डॉक्टर्स ने बोला की अगर हम टाटा में ईलाज कराना चाहते है तो हमे वहां फिर से सारा टेस्ट कराना पड़ेगा I वो लोग बी एच यू के टेस्ट रिपोर्ट से संतुस्ट नहीं थे और मुझे लगता है की बी एच यू की दुर्व्यवस्था को देखते हुए कोई भी वहां की किसी रिपोर्ट से संतुष्ट नहीं होगा I हम लोगों ने दोबारा से सारा टेस्ट टाटा में करवाया और रिपोर्ट आने के बाद डॉक्टर से मिल कर खारघर वाले सेण्टर में अगले सप्ताह का ऑपरेशन का डेट ले लिया I ऑपरेशन से पहले मुझे केवल एक बार खारघर जा के वह के डॉक्टर्स से मिलना था जो मैं शायद अगले दिन ही कर लिया I वह के डॉक्टर्स ने मुझसे बोला की ऑपरेशन के एक दिन पहले मरीज को भर्ती करा देना I मुझसे ये भी बताया गया की मरीज को ऑपरेशन के बाद किमो और रेडिएशन देना पड़ सकता है जिसकी सही जानकारी ऑपरेशन के बाद पता चलेगी I

अन्ततः ऑपरेशन के एक दिन पहले हमलोग खारघर पहुच गए, डॉक्टर ने कुछ थोडा बहुत चेकअप किया और बोला की कल सुबह सात बजे हॉस्पिटल आने के लिए I डॉक्टर ने ये भी बोला की ऑपरेशन वाले दिन सुबह कुछ भी नहीं खाना है, पेय पदार्थ ले सकते हैं I सब कुछ ठीक था लेकिन तभी एक बहुत बड़ी दिक्क़त हो गयी की हॉस्पिटल में प्राइवेट वार्ड में कोई भी बेड या कमरा खाली नहीं था I डॉक्टर्स ने बोला की हमलोगों को जनरल वार्ड के गेस्ट हाउस में रात बितानी होगी I सुनने में ये कोई बड़ी बात नहीं थी लेकिन जब हम लोग गेस्ट हाउस में पहुचे तो वहां का नज़ारा देख कर मेरा तो होश ही उड़ गया I वहां पर पहले से ही काफी ऐसे मरीज थे जिनका ऑपरेशन हो चुका था, अभी उनका घाव खुला हुआ था और एक कमरे में आठ बेड लगे हुए थे I सबसे बड़ी दिक्क़त ये थी की उस कमरे की खिड़कियाँ भी बंद की गयी थी ताकि मरीजों को ठंढ न लगे जिसके वजह से कमरे में अजीब तरह की बदबू और घुटन हो रही थी I

वो नज़ारा देख कर कोई भी डर सकता था और मैं ये नहीं चाहता था की मेरी माता जी को भी ऑपरेशन के पहले किसी तरह कोई डर हो I मैंने तुरंत निर्णय किया की मैं किसी हालत में वह रात नहीं गुजारूँगा I भाग्यवश मेरा एक दूसरा बनारस का दोस्त, बाबु, भी उस समय मुंबई में ही था और उसके एक रिश्तेदार खारघर में ही कहीं रहते थे जिनके बारे में बाबु ने मुझे बताया था I मैंने तुरंत बाबु कोई फोन किया और बाबु भी खारघर आ गया और हमलोगों को अपने रिश्तेदार के घर ले गया I भगवान की दया से इन रिश्तेदार का घर भी हॉस्पिटल से ज्यादा दूर नहीं था I उस रात मैं सो नहीं पाया था, रात भर सोचते हुए ही गुजर गया, सूर्योदय हुआ और हमलोग तैयार होकर हॉस्पिटल पहुच गए I डॉक्टर्स ने मुझे पहले ही बताया था की रेडिएशन की जरूरत पड़ सकती है I रेडिएशन भी दो तरह से होता है – १- अंदरूनी रेडिएशन और दूसरा बाहरी रेडिएशन I

अंदरूनी रेडिएशन में डॉक्टर्स ऑपरेशन के समय ही स्तन में एक ट्यूब डाल देते है जिसके सहारे रेडिएशन दिया जाता है लेकिन इसकी संभावना का पता ऑपरेशन के समय ही पड़ता है I असल में हर किसी को बगल में (कांख ) में लसिका गाँठ होती है, जिसे अंग्रेजी में लिम्फ नोड कहते है, और अगर लिम्फ नोड में कैंसर का इन्फेक्शन नहीं हो तो इस परिस्थिति में ट्यूब के द्वारा अंदरूनी रेडिएशन किया जा सकता है और अगर लिम्फ नोड में इन्फेक्शन हो तो इस परिस्थिति में अंदरूनी रेडिएशन की संभावना नहीं होती है और इस इन्फेक्शन का पता केवल ऑपरेशन के दौरान ही चलता है I डॉक्टर्स ने ये भी हमलोगों को बताया था की केवल गाँठ निकालेंगे या पूरा स्तन ये भी ऑपरेशन के समय ही पता चलेगा I खैर, एक हमलोग अपनी बारी का इंतज़ार कर ही रहे थे की तबतक एक डॉक्टर आये और मुझसे बोले की अपने स्मार्ट कार्ड में पैसा डलवा दीजिये I

मैं अपनी माता जी को ऑपरेशन थिएटर के बाहर छोड़ कर कार्ड में पैसा डलवाने चल गया I यहाँ एक और दिक्क़त हुई, मुझे अंदाज़ नहीं था की कितने पैसों की जरूरत पड़ेगी I मेरे पास जेब में शायद २०,००० रूपये थे और बैंक अकाउंट में ३५-४०,००० I मुझसे तुरंत ५०,००० जमा करने के लिए कहा गया और सबसे बड़ी दिक्क़त ये थी की सभी एटीएम एक दिन में २५,००० से ज्यादा रूपये नहीं देते हैं I खैर किसी तरह से मैंने पैसा जमा कर दिया और जब वापस ऑपरेशन थिएटर गया तो मेरी माता जी को पहले ही अन्दर ले जाया चुका था I थोड़ी देर बाद एक डॉक्टर आये और बोले की मेरे माता जी के लिम्फ नोड में इन्फेक्शन है जिसके वजह से अंदरूनी रेडिएशन नहीं हो सकता है I डॉक्टर ने ये भी बताया की चूँकि गाँठ बहुत बड़ी नहीं थी इस वजह से पूरा स्तन हटाये बिना ही ऑपरेशन किया गया है जो सुन के मुझे काफी अच्छा लगा I

डॉक्टर्स ने मेरी माता जी को केवल एक रात हॉस्पिटल में रखा और उसके बाद घर वापस जाने की छुट्टी दे दी I उन्होंने बोला की आगे का सारा ईलाज टाटा मेमोरियल के लोअर परेल वाले हॉस्पिटल में होगा I उनलोगों ने ऑपरेशन के दौरान ही पेट में एक नली लगा दी थी जो एक छोटे से डब्बे से जुडी हुई थी और इस नाली से हमेशा थोडा थोडा खून के रंग का तरल पदार्थ निकलता रहता था I डॉक्टर्स ने हमलोगों से बोला की जितना भी तरल निकलेगा उसे हमे एक जगह लिख कर रखना है और डॉक्टर को दिखाना है I ऑपरेशन के अगले दिन ही हमे लोअर परेल वाले हॉस्पिटल जाने के लिए भी बोला गया जहाँ एक व्यायाम से सम्बंधित कार्यशाला में मरीज को ले कर जाना था I ये कार्यशाला प्रतिदिन हॉस्पिटल में आयोजित की जाती है लेकिन उसमे वही लोग भाग ले सकते हैं जिनका ऑपरेशन हुआ हो I वो कार्यशाला मुझे शारीरिक व्यायाम से ज्यादा मनोवैज्ञानिक व्यायाम की लगी I

वहां व्यायाम के बारे में बताने वाले कुछ डॉक्टर थे जिन्होंने ऑपरेशन होने के बाद करने वाले व्यायाम के बारे में बताया I उन्होंने ये भी बोला की ऑपरेशन के बाद व्यायाम बहुत ज्यादा जरूरी है नहीं तो ऑपरेशन की अगल बगल वाली नसों में तनाव हो सकता है जो की आगे चल कर बहुत घातक हो सकता है I डॉक्टर्स के अलावा वहां कुछ एक लोग ऐसे भी थे जो अपने कैंसर का ईलाज करा कर साधारण जीवन व्यतीत कर रहे थे I उनलोगों ने भी अपने अनुभवों को मरीजों के साथ साझा किया जिससे की मरीजों का मनोबल बढ़ सके और मुझे व्यक्तिगत रूप से ये बात बहुत ही अच्छी और जरूरी लगी I इसी बीच डॉक्टर्स ने किमो शुरू करने के पहले होने वाले जांचों को लिख दिया जिसमे बोन स्कैन (पूरे शरीर के हड्डी का स्कैन) और सी टी स्कैन भी शामिल था I बाकी और जांचो की तरह ही इनदोनो जांचो के लिए बहुत लम्बी लाइन थी I बोन स्कैन के लिए एक सप्ताह और सी टी स्कैन के लिए पंद्रह दिन बाद का नंबर मिला जो की बहुत बड़ी मुश्किल नहीं थी क्योकि किसी हालत में भी किमो जल शुरू होने वाला नहीं था I

अगर हमलोग चाहते तो बाहर भी दोनों जांच करा सकते थे लेकिन हम लोगों ने टाटा मेमोरियल में ही जांच कराना उचित समझा I इस दौरान ऑपरेशन के वक़्त डॉक्टर्स ने घाव के पास से तरल पदार्थ निकालने के लिए जो नाली लगायी थी वो भी निकाल दी गयी I अबतक सारी रिपोर्ट्स भी आ चुकी थी जिसमे लगभग पंद्रह दिन लगा I अन्ततः हमलोग डॉक्टर्स के पास फिर गए और उन्होंने सारी रिपोर्ट्स का अध्ययन करने के बाद हमे बताया की मेरी माता जी को आठ बार किमो लगेगा जो की हर 21 दिन के अंतर पर दिया जायेगा I किमो एक विशेष प्रकार की दवा होती है जो की कैंसर के रोग में मरीजों को दी जाती है I अलग अलग मरीजों को उनके रोग एवं स्वास्थ के हिसाब से अलग तरह की दवा दी जाती है I मेरी माता जी को दो अलग तरह का किमो दिया जाना था, शरुआत के चार किमो अलग और अंत के चार किमो अलग I मैंने किमो के बारे में कई किस्से सुने थे जिसे लेकर मैं डरा हुआ था I असल में मुझे कोई भी किस्सा याद नहीं था फिर भी मैं बहुत डरा हुआ था I

मेरा सबसे बड़ा दर मेरी माता जी की उम्र को लेकर था I मैंने डॉक्टर से पुछा की क्या एक ६७ साल की महिला को किमो देना सुरक्षित होगा? और डॉक्टर ने बोला की किमो का किसी व्यक्ति के उम्र से कोई लेना देना नहीं होता है, सब कुछ निर्भर करता है व्यक्ति के स्वास्थ पर I अगर व्यक्ति स्वस्थ है तो 80 साल के बुजुर्ग को भी किमो दिया जाता है और अगर व्यक्ति अस्वस्थ है तो 20 साल के नौजवान को भी किमो नहीं दे सकते है और चूँकि मेरी मेरी माता जी का स्वास्थ बिलकुल ठीक था, उनको सुगर या ब्लड प्रेशर तक नहीं था, इसलिए किमो देने में कोई दिक्क़त नहीं है I ये सुनकर हमलोगों को काफी तस्सली हुई I किमो के डॉक्टर्स से हमलोगों को रेडिएशन के डॉक्टर से भी मिलने को बोला I रेडिएशन के डॉक्टर्स ने हमको बताया की किमो ख़त्म होने के बाद 20 रेडिएशन भी देना पड़ेगा जो की हफ्ते में 5 दिन होगा I

सभी कुछ निर्धारित होने के बाद डॉक्टर्स ने हमको दो विकल्प दिए- या तो हमलोग किमो और रेडिएशन दोनों टाटा मेमोरियल में ही कराये या तो वो सारा कुछ तैयार कर देंगे और आगे का किमो हम बी एच यू में ले सकते हैं जिसे सुनते ही मेरी माता जी ने डॉक्टर से हाँथ जोड़ कर बोला की वो टाटा छोड़ कर कहीं नहीं जाना चाहती है और डॉक्टर लोग हंस कर बोले की वही लोग सारा ईलाज करेंगे I और वैसे भी मेरी माता जी का रेडिएशन बी एच यू में नहीं हो पता क्यों की रेडिएशन की मशीन भी कुछ अलग अलग तरह की होती है और जो रेडिएशन मेरी माता जी को दिया जाने वाला था वो बी एच यू में उपलब्ध नहीं था I मेरी माता जी को दिया जाने वाला रेडिएशन का नाम था लिनिअर एकसेलरेटर I ये सुविधा हिंदुस्तान में केवल गिने चुने हॉस्पिटल्स में ही उपलब्ध है I

मेरी माता जी इधर बीच बी एच यू से इस वजह से और ज्यादा डर गयी थी क्योकि टाटा मेमोरियल जाते जाते उनकी मुलाकात कई ऐसे लोगों से हुई जो की उत्तर प्रदेश और बिहार के रहने वाले थे I उनसभी लोगों ने शुरू में अपना ईलाज अपने शहरों में कराया था लेकिन वहां के डॉक्टर्स और हॉस्पिटल ने पूरा केस बिगाड़ दिया जिसके बाद वो बी एच यू गए लेकिन चूँकि हालत पहले ही बहुत ज्यादा ख़राब हो चुकी थी इस वजह से बी एच यू ने भी टाटा मेमोरियल केस भेज दिया I मैं खुद कई ऐसे लोगों से मिला जो हिन्दुस्तान के अलग अलग कोनों से आये हुए थे लेकिन उन सबकी कहानी एक ही थी की उनके शहर के डॉक्टर्स ने सारा केस बिगाड़ दिया I खैर, रेडिएशन के डॉक्टर्स ने ही किमो और रेडिएशन के बाद होने वाले सामान्य दुष्प्रभावों के बारे में भी बता दिया I उन्होंने ने बोला की किमो का प्रभाव अलग अलग व्यक्तियों पर अलग अलग हो सकता है लेकिन जो सबसे सामान्य दुष्प्रभाव है उनमे शरीर में दर्द, पेट से सम्बंधित दिक्क़तें, उलटी होना या महसूस होना और  बाल झाड़ना आम बात है I

अलग अलग किमो भी अलग अलग प्रभाव करता है लेकिन ये सारी दिक्क़तें किमो ख़त्म होने के बाद धीर धीर ठीक हो जाती है, बाल भी दोबारा से २-३ महीने बाद से वापस आने लगते हैं I डॉक्टर्स ने मुझे बताया की पूरा ईलाज होने में तकरीबन 6 महीने का वक़्त लगेगा जो की मेरे लिए बहुत आसान नहीं था I मेरा बड़ा भाई दिल्ली में रहता है और हमलोगों ने सोचा की यदि संभव हो तो आगे का ईलाज दिल्ली में भी करा सकते हैं, इसलिए हमने डॉक्टर्स से 2 दिन का समय माँगा और इस बीच मेरा बड़ा भाई दिल्ली के एम्स हॉस्पिटल में भी संपर्क किया I एम्स में किमो के लिए तकरीबन 6 महीने की लाइन थी और एम्स के डॉक्टरों ने हमसे बोला की यदि हम टाटा मेमोरियल छोड़ कर एम्स में ईलाज कराएँगे तो शायद ये उनके जीवन का पहला ऐसा केस होगा होगा I वहां के डॉक्टर्स का कहना था की जब कोई केस उनसे नहीं संभल पाता है तब वो टाटा मेमोरियल की मदद लेते हैं और यदि हमारे पास रहने की व्यवस्था हो तो हमे टाटा मेमोरियल में ही ईलाज कराना चाहिए I

फिर हमने सोचा की दिल्ली के ही किसी प्राइवेट हॉस्पिटल में भी संपर्क किया जाये तो हमलोगों ने नॉएडा के एक बहुत प्रसिद्ध हॉस्पिटल, जिसका नाम धरमशिला हॉस्पिटल है, में संपर्क किया I वहां का खर्च सुन कर हमलोगों के होश ही उड़ गए, वहां हर एक चीज़ टाटा मेमोरियल से लगभग दस गुना ज्यादा महंगा था I जो किमो की दावा टाटा में 6-8000 रूपये की थी वही किमो वहां 80,000 रूपये की थी, जो रेडिएशन टाटा में तकरीबन 20-25,000 रूपये में होता उसी रेडिएशन का धरमशिला में 2,50,000 रूपये माँगा जा रहा था I अन्ततः हमलोगों ने निर्णय किया की सारा ईलाज टाटा में ही कराएँगे I हमलोग फिर से टाटा गए और वहां किमो का डेट ले लिए I हमलोगों को किमो के दिन जल्दी सुबह बुलाया गया था क्योकि किमो के दिन सुबह एक खून का साधारण सा जांच होता है जिसको सी बी सी (कॉमन ब्लड काउंट) बोलते हैं, इस टेस्ट के द्वारा खून में सेल्स का पता लगाया जाता है I

टाटा में इसकी रिपोर्ट आने में तकरीबन 4-5 घंटे का समय लग जाता है, फिर उसके बाद वो रिपोर्ट ले कर किमो के डॉक्टर के पास जाना होता है और अगर रिपोर्ट सही है तो वो किमो के लिए लिख देते हैं I फिर उसके बाद टाटा की पांचवी मंजिल पे जाना होता है जहा किमो चढ़ाया जाता है I वहां पर भी नंबर लगाना होता है, टाटा में सोमवार को बहुत ज्यादा भीड़ होती है क्योकि इमरजेंसी को छोड़ कर हॉस्पिटल शनिवार और रविवार को बंद रहता है, फिर भी 2-3 घंटे में नंबर आ ही जाता है I चूँकि अलग अलग मरीजों को उनके रोग के हिसाब से अलग अलग किमो दिया जाता है इसलिए किमो के विभाग में पंजीकरण कराने के बाद दावा लेने के लिए लाइन में लगना पड़ता है और यही ज्यादा समय लगता है I जब दवाई तैयार हो जाती है तो उसको एक मरीज को नसों में चढ़ाया जाता है (जैसे साधारण पानी या खून चढाते हैं ) I

अलग अलग किमो को चढाने में लगने वाला समय भी अलग अलग दवा पर निर्भर करता है I मेरी माता जी को शुरू में जो किमो चढ़ाया गया उसमे केवल 30 से 45 मिनट लगता था I किमो चढ़ने के तुरंत बाद मरीज को घर भेज दिया जाता है लेकिन किमो के बाद होने वाली परेशानियों ( जैसे सर दर्द, उलटी, बुखार, शरीर दर्द इत्यादि ) के लिए डॉक्टर कुछ दावा भी देते है I मेरी माता जी को शुरुआत के 24 घंटो तक कुछ भी अलग महसूस नहीं हुआ लेकिन उसके बाद किमो का प्रभाव समझ में आया I उनके पेट में मरोड़ सा होने लगा, हल्का बुखार भी हो गया और कब्ज भी हुआ लेकिन जब उन्होंने डॉक्टर के द्वारा दी हुई दवाओं को लिया तो ये सारी दिक्क़तें ख़त्म होने लगी I साधारणतयः उनको ये दिक्क़तें किमो के 3-4 दिनों तक रहती है और उसके बाद धीरे धीरे सब कुछ ठीक हो जाता है, लेकिन तभी तक अगले किमो का भी दिन आ जाता है I

खैर शुरुआत के चारो किमो ठीक से बीत गया और इस बीच मेरी माता जी किमो लेने के बाद बनारस आ जाती थी और किमो एक दिन पहले फिर मुंबई पहुच जाती थी I पांचवे किमो से दूसरी दवा दी जाने वाली थी और डॉक्टर्स ने हमे बताया की इस किमो में पेट से सम्बंधित कोई ख़ास दिक्क़त नहीं होती है लेकिन शरीर में दर्द इस किमो का बहुत ही साधारण सा दुष्प्रभाव है और ठीक ऐसा ही हुआ भी I जब मेरी माता जी को पांचवा किमो चढ़ाया गया उसके 24 घंटो बाद उनको पूरे शरीर में जबरदस्त दर्द होना शुरू हुआ, ये दर्द कमर से नीचे बहुत ज्यादा था I अन्ततः हमको उन्हें टाटा के इमरजेंसी वार्ड में ले जाना पड़ा जहाँ डॉक्टरों ने कुछ दवा दिया जिससे दर्द धीरे धीरे ठीक हो गया I मेरे माता जी का ईलाज अभी भी चल रहा है, तीन किमो बाकी है और उसके बाद रेडिएशन थेरेपी, पूरा इलाज अप्रैल में ख़त्म होगा और मैं उसके बारे में भी आगे लिखूंगा I

ये लेख लिखने मेरा एक ही मकसद था की यदि किसी को टाटा हॉस्पिटल या कैंसर ईलाज से सम्बंधित कोई जानकारी चाहिए हो तो वो मेरे अनुभव के आधार पर पर अपने ईलाज के बारे में कोई निर्णय ले सके और मुझे उम्मीद है की ये पोस्ट कुछ लोगों की मदद जरूर करेगा I लेकिन एक बात मैं सभी लोगों से बोलना चाहूँगा की यदि आप किसी का भी कैंसर का ईलाज करना चाहते है, और अगर आपके यहाँ अच्छा हॉस्पिटल नहीं है, तो अपना समय मत व्यर्थ कीजिये I सीधा टाटा मेमोरियल जाइए और वो लोग आपका ईलाज करेंगे I कई हॉस्पिटल भटकने के बाद मेरा एक मद है की टाटा मेमोरियल में जो लोग काम करते है वो सच में भगवान् से कम नहीं है I हो सकता है आपको मुंबई में रहने खाने की दिक्क़त होगी लेकिन जीवन से ज्यादा महत्त्वपूर्ण कुछ नहीं होता और एक बात हमसभी लोग जानते हैं की कैंसर का ईलाज जितना जल्दी शुरू हो उतने बेहतर तरह से आदमी ठीक होता है I जय हिन्द I

 

Plastic Kills

Baba

Baba

We have always been hearing about how plastic is a serious threat for our planet but not many people seem serious about the issue. Especially in India where there is plastic just everywhere, even the blessings at temples are packed in plastic. Government does all the propaganda by making laws that plastic should be prohibited but nothing is implemented. Just like anyone else living in this country I am also affected by plastic but something happened a few days ago which just blew my mind. Actually I met with someone new in my life a few weeks ago and we became really good friends. A few weeks ago I was sitting at Assi crossing and suddenly a bullock came to me.

Baba with Rahul

Baba with Rahul

He was very cute, just came to me like we had known each other for long time and put his face over my lap. I started stroking him and he seemed very relaxed by me doing it. Suddenly a few of my other friends also came and the bullock behaved very friendly with them as well. We offered him some food but he didn’t seem to be very excited about eating it. Anyways, we named him the same evening and his name was Baba. Baba was with us for almost an hour and then we went back home. We saw Baba the next day at the same place where we met yesterday.

Now we noticed something strange in Baba’s body. His stomach looked kind of bigger than his size. We tried to touch it and it seemed very tight. We decided to ask someone who does dairy business if Baba’s stomach looked strange to him as well. Luckily there is a dairy businessman right at Assi crossing. We called him and asked about what he thought about Baba’s stomach. Based on his experience he said that Baba has eaten a lot of plastic and that’s why his growth has stopped, he doesn’t feel like eating, he is not happy and something is not done soon then he might die as well.

We had also noticed some problems that Baba seemed hungry but he could not eat. His seemed bigger in age than his physical growth. All of my friends were very sad to hear it and we decided to contact some doctor. A friend of mine who owns a cow contacted the doctor and doctor said if the plastic is in Baba’s body for long time then the only possible way to take it out is an operation. Baba’s was not in good shape at all, we noticed that he was becoming more and more skinny everyday. We were still discussing what to do with Baba and suddenly we saw his dead body by the corner of the street where we used to meet.

It was very sad to see him dead and I don’t really think that we will forget him ever. But by looking at what happened with Baba, we can easily imagine what is the condition of our animals in India, the country where each and every form of life is worshiped. Talking about Varanasi, this city had a tradition of setting up big containers at every corner of the alleys which would be filled with water and food by the locals of Varanasi so that street animals could stay happy and healthy but now the situation has become really worse that our street animals are dying by eating garbage which is mixed with plastic.

I have no hope from the government and I think the only way to solve this problem would be some initiative from the people themselves. But it also seems very complicated because whatever we get is always packed in plastic and it has to go somewhere. Usually people put their garbage on the street from where it should be collected by municipality. We also don’t have any system of separating the garbage and everything is mixed. I think the best thing would be use as less plastic as possible. I don’t know when things will change but I will try my best to change myself for sure. RIP Baba.

Baba Dead

Baba Dead

Dying in Benares

I worked with a photographer named Jane Becker from Canada. She wanted to photograph widows and hospices in Varanasi. Since I had already worked with a researcher from the University of Venice who did research about widows in Varanasi, I already knew where to take them. About two years ago I worked with a researcher from the University of Berlin who was interested in people who come Benares to die so I had some idea about this subject also. We decided to start working with hospices and ashrams first. I took her to an ashram near Assi ghat and we interviewed a few people and she did some photography also.

Next day I took her to another ashram where more than 2,000 people stay to live their last part of life. This ashram has a section for Sanyasis and a separate section for family people. The ashram was huge with so many people in there and there was a school also for Sanskrit studies. We visited this ashram but did not photograph. The next day we went to a place called Kashi Mukti Bhawan which really different than other places in Benares. Benares has so many places and ashrams where people stay to die but this place was entirely different.

Kashi Mukti Bhawan is owned by the Dalmia family. The idea behind founding of this hospice is that once Mr. Dalmia was visiting Varanasi and he visited so many ashrams where people stay to die. His grandmother also wanted to live her last part of the life in Varanasi so he decided to built a free temporary stay for the people who want to die in Varanasi. Kashi Mukti Bhawan has a rule which could sound strange but they offer only 14 days of stay. So most of the people come to stay at Kashi Mukti Bhawan are the people who are just going to die at any moment.

They do not allow anyone who is below 60 years old or looks like they are not dying. The building has ten rooms and when I went there only one room had people and the rest of the rooms were vacant. They have a temple also inside the building where they have puja going on most of the time. The manager said that until four years ago they did puja 24 hours a day but they decreased by a few hours because not many people come anymore. In the past all the rooms used to be full all the time but now sometimes they have only one visitor, sometimes two or three and sometimes just no one.

And if there is a person dying there, then the priest of the temple goes to the this person and reads Ram Charit Manas for him at least for five minutes at four different times in a day. The idea behind it is that if a dying person hears the chantings of Ram Charit Manas, then he gets salvation. We interviewed a woman staying at Kashi Mukti Bhawan who had brought her father all the way from Sasaram, Bihar to Kashi Mukti Bhawan so that her father could die in Varanasi and get salvation. We asked her why she chose only Kashi Mukti Bhawan in Varanasi, why not some other ashram and she said that all of her family members come to Kashi Mukti Bhawan to die, very interesting.

She also talked about the importance of dying in Varanasi but at the same time she gave some importance to Kashi Mukti Bhawan also. She said that Kashi Mukti Bhawan has an ideal atmosphere for dying. She said that Kashi Mukti Bhawan has chanting all day long and the priests read Ram Charit Manas for the dying person which makes it a special place for dying. We asked the manager why they allow only 14 days of stay and he said that 14 days are enough to die. In case the person is still sick and feels like they are going to die even after 14 days, they allow them to stay for a week or two more but usually people die within a week.

The manager said that in some cases people came and returned home by recovering from their sickness. So they came to Kashi Mukti Bhawan with serious sickness and felt like dying but they recovered and did not die. Well, in any case Kashi Mukti Bhawan seemed different than most of the other ashrams in Varanasi and I would like to learn more about it.

Prabhu’s death and superstition

My friend Prabhu died last month because of colon cancer. His death did some serious damage to my life as he was one of my best friends. He was already up anything and everything. I really miss him a lot. I was talking about his death with my two friends- Babu and Rahul. Babu is a graduate in science and Rahul is graduate in arts. Babu was preparing to study in London to both of them are educated and have lived in the city for their whole lives. All of my friends and everyone else who knew Prabhu, knew that he died of colon cancer but Rahul and Babu told me something that shocked me.

They said that one of the biggest reasons of Prabhu’s death was his motorbike which he had bought an year ago. They said that Prabhu’s Saturn was not supporting him and buying anything made of iron is really dangerous for someone whose Saturn is not happy with them. They said that Prabhu made four mistakes: he bought a motorbike, he bought his bike on Saturday, he chose black color for his motorbike and he did not let others drive it. According to Babu and Rahul black color is anti-Saturn color so buying a black motorbike was a serious mistake done by Prabhu.

Prabhu was in love with his motorbike and would not give it to others, not even to his family members and Rahul and Babu think that if he would have given his bike to other people, then it would have decreased the bad affect of Saturn and he would have been able to fight with colon cancer. After hearing this crazy idea I was wondering what could be worse idea than this about such a disease which we really ne to understand. India is changing, our food is changing, life style is changing and I know that such diseases like cancer is going to increase a lot in India and we really need to know what it is but relating cancer to the motorbike?

I often hear about how people mix animal fat with oil and butter, how old potatoes are washed with acid to give them a new look or just how more people eat meat products and I am sure none of these things are good for health. Prabhu’s doctors said that he got cancer because of too much deep friend and spicy food. Prabhu also told me once that he did not eat his luch within past seven years. He had a Kachaudi (deep fried food) shop and he used eat 10-12 Kachaudis with really spicy vegetables every morning and then did not eat anything for the whole day.

Prabhu admitted that he used to use burnt oil to prepare Kachaudi. He ate this crazy food continuously for seven years. His dinner was also usually roti with spicy vegetables. He had hardly eaten lentils for 10-15 times within past seven years. He had serious constipation problem for years but he never saw a doctor for this problem. He used to chew betel and tobacco a lot and I think all these things caused him colon cancer not his black motorbike which he bought on Saturday and would not let others drive it. Sometimes I feel like India is changing because of its young blood but when I see people like Rahul and Babu, it seems like it will still take years for this young Indian blood to be purified and pure that will create a healthy India with healthy mind.

Ghosts haunting the neighbors

There is a Yadav family lives next door. There are six members in the family- three girls, their parents and grandma but none of them work. Grandma is a retired nurse and gets pension and they have rented a few rooms in their house which is the source of income for them. I don’t think that their monthly earning is more than Rs. 13,000 which is kind of sufficient to survive for a family of six members in Benares if they live very simple life but this family is always in trouble because they spend most of their money on exorcists.

They believe that their whole family is affected by ghosts. The biggest problem is that grandma, who used to be a nurse at BHU, also believes that her house and family is affected by ghosts. The mother of the kids has gastric problems and she burps like crazy all the time. Her burps are extremely loud that I can hear even in my home. I am sure that she has serious problem and she gets stomach ache also all the time and sometimes she feels like her whole body is burning from inside. But the whole family says that this problem is caused by ghosts.

The sound of her burp is said to be sound of the ghosts and the stomach ache and burn inside her body is also believed to be caused by ghosts. They say that the ghosts attack her every evening and in night times. The grandma was talking about it with my father and my father advised her to take the patient to a doctor but this grandma was telling that she had already contacted several doctors but her daughter never got any relief. She was trying to say all the time that doctors are not the one who can do something, only and only exorcists can help her.

She asked my father if he knew any good exorcists but my father suggested her few doctors but she did not want to hear anything. She was telling my father that he should come and see her daughter when she is on. She was telling that her daughter starts screaming like crazy when the ghost attacks her. She said that somebody has sent the ghost to kill her daughter and her whole family and the ghost will not go away until he kills everyone.

I have also heard some strnage noise coming out of that house. I seen strange people coming to her home and doing strange pujas. A few months ago they had rapped a thread all around their house, and then I saw a big bamboo on the roof. Every evening they burn something smoke their whole house and then start coughing like hell. Smoke is done by the husband of the patient and when he does it all other members of the family go inside the rooms and don’t come out thinking that the smoke would kick the ghost out of their home and if they are seen by the ghost, the ghosts will kill them.

Sometimes I hear them shouting in the night – look he is coming, kick him out, why do you live here etc. and other family members shout go to hell, what are you doing here, who has sent you, why do you want to kill us… Its crazy. They always want to meet a new exorcist. I heard them talking with a person who was suggesting them to go to a tomb near Lucknow. This exorcist was saying that whoever have been there, got rid of their ghosts. He was telling that puja for a ghost at the tomb is not expensive, it is only Rs. 15,000 for the whole family.

Rs. 15,000 is still something and how someone can spend that much money for ghosts? I know that Hinduism believes in ghosts but at the sametime we super cheap and convenient way to get rid off them, if you don’t like them. The word “Ram” is believed to be mahamantra (huge mantra) and it is said that one can get rid off all kinds of crazy ghosts, demons, evil or any bad spirit only by repeating the name of Ram. If don’t want to believe that there are ghosts around me but if I would have do something to get rid of ghosts, I would choose this super convinient way of repeating name of Ram.

Delhi Gay Pride 2009 – parade


Rainbow salute to Delhi

Rainbow salute to Delhi

I attended Delhi Gay Pride on the 26th. I heard a lot about gay pride festivals and how fun they are but had no idea about it so I was so excited to be there. I arrived in Delhi on the 24th and Adam and Megan also joined me for the parade. They were supposed to go to Benares but they changed their flights and came to Delhi to join me at gay pride. The Gay Pride started from Barakhambha Road and ended in a bar called M Lounge in Sector 15, Noida. I arrived at the parade place with Adam and Megan and what I saw was just amazing.

I am a girl and love a girl

I am a girl and love a girl

They had hired band parties for music. When I reached, there were about two thousand people present. I had asked the organizer how many people were they expecting and he had said that last year they were expecting somewhere around 500 but about 1500 participated and this year they were expecting something like 2500 participants. He told me that the media was also very supportive to them last year and he was expecting for the same this year as well. When I reached there, I found a lot of media people covering the event. Police were also there to help them. I don’t know if they were helping the organizing committee because they were supposed to or they just wanted to but they were helping.

It was an international event

It was an international event

I was just wandering here and there and watching people doing things. I had thought that I would be talking to the participants but after reaching there, I decided not to disturb them at that moment because they were extremely happy and enjoying themselves and I did not want to disturb them by making them talk to me. The most interesting thing for me was that the participants were not only gays, but a lot of straight people and families were also there. A lot of foreigners were also there. I talked with a few of the foreigners about why they were there in the parade and all of them answered almost the same thing- to support the cause.

Posters

Posters

The organizing committee had arranged masks to cover the faces for the people who did not want to reveal their identities and a lot of the participants, even straights and families, were using these masks. I know that gay culture is not accepted yet in India so it made sense to me for the gays to wear the masks but I did not understand why straight people were using the masks. What was their reason to participate in the parade if they were so shy? I did not like it. �I think everyone should come forward and talk about the issue; only then the gay community in India can get its social identity.

Band Party

Band Party

I heard a few gays talking with the media and when the media asked them how they feel being a gay, all the people said the same thing- that people make fun of them and they do not have equal rights. The parade was getting started now and the energy, joy and happiness could easily be felt there. The band players had started playing their instruments, everybody was so happy, a lot of people were dancing with their partners, a few of them were alone and they were just dancing and jumping by raising the rainbow flag in the air.

I liked this poster

I liked this poster

The parade was supposed to start at 5 PM but obviously it was also delayed�as most of the things in India, but this was the first time in my life when I was enjoying the delay. Finally the parade started sometime around 5.45 and to be honest this instance of my seeeing the energy, joy and happiness I saw there, was only my second experience in my whole life. I had seen the same amongst the people of Mehndiganj in the year 2007 when they were going to start their rally against Coca-Cola. Lots of loud music, people jumping, shouting, dancing, laughing… It was awesome. The atmosphere and the people there made me full of energy.

The rainbow flag

People jumping with the flag

They had a huge rainbow flag and almost twenty people were holding it, jumping with it and people were dancing under this flag, music was on… wow…it was just awesome. The participants of the parade were very mod and liberal, they were wearing very modern dresses. A lot of them had designed special masks, caps, hats and dresses for themselves. �I saw a few girls wearing only shorts and bras, and they had tattoos which is very uncommon to see in India. I had never ever seen those kinds of dresses on Indian girls. A lot of hijras were also there. They were also dressed somewhat differently than what they usually dress like.

The parade attracted good number of people this year

The parade attracted good number of people this year

The parade started moving and more and more people started joining it. A lot of students came to join us. The number of participants had reached up to something like 3000 by now. A lot of people were standing at both sides of the road and just watching the parade. I saw many people coming out of the restaurants and other shops and they also joined us. The participants had designed different kinds of banners, posters, flyers and a lot of them had got different slogans written over their clothes and bodies.

Adam distributing HIV & AIDS education pamphlets

Adam distributing HIV & AIDS education pamphlets

A lot of people had gotten their face painted in rainbow color. I had brought HIV & AIDS education pamphlets to distribute amongst the participants and general people and Adam and Megan helped me doing it. I gave them about 100 pamphlets and they distributed them within a few minutes. I noticed something strange that a few people just did not want to take the pamphlet but a few were very curious. A few people came to us asking for a pamphlet. There was an old guy who took our pamphlet and came back to Adam and he wanted to talk about the material written in it.

Thanks, Adam and Megan

Thanks, Adam and Megan

Adam asked him to talk to me and he came to me and asked do you work for HIV & AIDS and I said yes. And then he asked me if I was supporter of the gay community or gay rights and I again said yes. And then he told me something strange. He asked me how I could be a supporter of gay rights and then work on HIV & AIDS at the same time. He said that gays are responsible for the spread of HIV all over the world. He seemed kind angry when he was talking and I wanted to talk to him about it but the parade was moving so I just gave him my business card and asked him to meet me later.

Avoid Girls?

Look at the T-shirt

He never contacted me but it was strange to see him blaming the gay community for spread of HIV & AIDS. I know that gays are at higher risk of contracting HIV than straights but it doesn’t mean that they are responsible for the spread for this disease. Many people say that gays do much safer sex than straights. I think the Indian government’s HIV & AIDS program and corruption in the public health sector is responsible for the spread of HIV, not gays. I listened to a gay guy talking with a journalist and this guy was saying that he had been in gay relationship for the past five years and he was proud to be a gay. He said that gays are the people who do safe sex and know a more about STDs than straights.

So helping to each other

So helping to each other

The journalist asked him if he had informed his family about his gay life and he said that his father knew about it but his mother sometimes told him that he is also becoming part of hijra community. I have noticed that people do not know the difference between gays and hijras. Finally the parade arrived at Jantar Mantar and stopped where they had organized speeches of social activists, gay rights supporters, different NGO members and a few gays also. Few gays who were wearing masks during the parade took their mask off when they came on the stage. It seemed like everything changed within a few hours. They were shy before starting the parade but not anymore.

I loved her dress

I loved her dress

They said very loudly that now they were not shy anymore. They were proud to be gay. Speech happened about section 377 and a few other gay rights related issues and finally the organizer asked everyone to light up a candle. I also lit up a candle. Finally the parade was over but now there was a party left which was supposed to start from 9.30 PM at M Lounge bar in Sector 15, Noida. It was about 7 o’clock now and they asked the participants to gather together again at 8.30. They had arranged a few buses to take participants at the party place. I was so excited for the party.