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.

Banaras Hindu University Hospital cancer treatment for Prabhu

My friend, Prabhu, got sick a few days ago. He was in extreme pain from a stomachache. He was taken to the BHU (Benares Hindu University) emergency ward immediately. Doctors checked him and said that he had some serious problem. Prabhu wanted to be admitted to the hospital but doctors there did not want to admit him. They said that there was no empty bed in the emergency ward. They told Prabhu’s parents to go upstairs and see if there was any bed available in the general ward. Prabhu’s family went to the general ward and found that the general ward also did not have any empty bed.

Prabhu was in extreme pain and he was crying but doctors did not want to see him. Finally Prabhu’s family decided to take him to some other hospital. They took him to a hospital called Mata Anandmayi Hospital, Bhadaini but same thing was there also- no bed. Prabhu was still crying and now he almost fainted. They took him again to BHU but the doctors were showing strange behavior. Now they did not want to talk to Prabhu’s family. Prabhu’s father even touched the feet of the doctors requesting them to treat Prabhu but these crazy doctors were telling the same thing again and again that there was no seat available in the hospital.

They asked the doctors to at least start the medication but they did not want to do this either. It seemed like they just did not want to see Prabhu. They again took him to Mata Anandmayi Hospital but again the same thing- this hospital still did not have a seat. They did not want to go to some other hospital because these two hospitals were government hospitals and were cheap. They were more looking for BHU because it was big and it had lots of advanced facilities. They again went to BHU and this time the doctor just threw Prabhu’s papers and told them to get out of hospital and do not come again.

Prabhu’s pain had started in the early morning and it was evening time now but still he could not get any medication. Prabhu’s parents were so angry that they started yelling at the doctors and other employees of the hospital. Finally the doctors called the security guards and asked them to kick Prabhu’s family out of the hospital. Now Prabhu’s family did not know what to do. One of Prabhu’s friends knew the ex-president of the students union of BHU. He thought to call him and ask for help.

They called him and told him everything. The ex-president called the doctor and said that Prabhu was his relative and then this doctor said that Prabhu should have told them before about his relationship. Doctors said that they will arrange a bed for Prabhu. After the call of this president, the doctors arranged a bed for Prabhu. I don’t know where they brought this bed from. I think they already had a bed but they just did not want to admit Prabhu for whatever reason. Well, finally Prabhu was admitted to the hospital at 11 o’clock night time. �

They did all the testing and started medication. Prabhu was getting better now but then doctors said that they would operate on Prabhu. They said it would be better if this operation was done at PGI, Lucknow. Prabhu’s family brought Prabhu to PGI, Lucknow and again they had to face the same situation. PGI doctors also said that they did not have a bed. Prabhu’s brother knew some very famous Baba in Lucknow. He called this Baba and the Baba called to the hospital and after this call they said that they could arrange a bed for Prabhu.

He was admitted to the hospital for a few hours and then doctors came and checked him for a minute, looked at the old reports and said that he had colon cancer. They also said that they will have to operate on him but still they can not guarantee that he will be alive even for next ten days. They asked Prabhu’s family to immediately deposit Rs. 1,25,000 ($2,500). As Prabhu heard that doctors wanted to operate on him and they said said that they did know if Prabhu would be alive after the operation, Prabhu asked his parents to bring him back to Benares. He said that if he has to die then he would prefer dying in Benares.

This news spread in my neighborhood like a fire in the jungle. Everybody was so sad that Prabhu had cancer. We could not believe that he was going to die. Everybody was so sad. Prabhu came to Benares and I wanted to see him but I did not find myself brave enough to see him. There is a very famous cancer research center in Mumbai called TATA Memorial Center. I suggested Prabhu’s family to take him to TATA Memorial. I called my friend Alok in Mumbai and told him about the situation. I asked him to take an appointment with the TATA Memorial to talk about Prabhu.

I emailed him all Prabhu’s medical reports. Alok took the appointment for the same day and talked to the doctors and showed them all the reports, and TATA’s doctors said after looking at those reports nobody could say that the patient had cancer. They said that if the doctors at PGI had said that the patient had cancer after looking at those reports, then they were wrong. Alok called me and gave this beautiful news. I was so happy to hear that Prabhu did not have cancer. Prabhu was admitted at some private hospital now. I immediately went to see Prabhu and gave them this news.

Prabhu and his family, everyone started crying from happiness. Everybody was so happy. Doctors operated on him at that private hospital and now Prabhu is a lot better. He is back home now and feels normal. Doctors have connected a plastic tube to his intestine to discharge stool but doctors say that he will be alright and they will remove this plastic tube within the next six months. �Prabhu is now scared of BHU and never wants to go there again for any reason. Even though it is cheaper for him to get medication at BHU, he just doesn’t want to think about it.

My baby fell down from a chair and broke his head a few days ago. He was bleeding hard. We took him immediately to the BHU emergency ward. BHU has two registration counters. One opens during day time and other one, which is in the emergency ward, opens after the first one closes. The emergency ward registration counter is supposed to close at 8 o’clock. I had reached there around 7.15 and the counter was already closed which means at this time there was no registration going on anywhere in BHU, crazy. The doctor asked me to get a registration paper. I went to the registration counter and found it closed.�

I asked a few security guards sitting there about how to get a registration paper and they told me enter the room from the back-door. I got inside the room from back-door and saw two people counting the money. I asked him to make a registration paper for my baby but he seemed more busy with counting the money. At the same time another person who wanted to register his patient, opened the window and asked for a registration. The person sitting at the counter became angry at him and asked him very loudly how dare he to open the window. The person at the window said that it was emergency case and doctors had asked him to bring the registration paper and since the window was closed, where could he get it if he had not opened the window.

This made the clerk more angry and he hit his hand with the shutter of the window. Now his hand was stuck in the window and this crazy clerk was hitting his hand again and again. That person was in pain for sure. Finally the clerk closed the window and I don’t know what happened with the patient. Maybe they waited for the general registration counter to open or went to some other hospital. Then the clerk looked at me and asked why did I come inside his room. I was already angry after seeing his behavior so I was also speaking very loudly in Benares language, to make him aware that I was local, that doctor had sent me to get a registration paper.�

The clerk told the other person sitting there to make a registration paper for me. I went with the registration paper to the doctor and then the doctor made me write that I was the guardian of the baby, that baby had fallen down from the chair and that I would not go to the police in the future for this case. After this they started looking at my baby and asked me to buy nylon thread for stitching and some other medicines because they did not have anything. It was crazy that the emergency ward of BHU did not have nylon thread. I have heard that BHU employees sell the stuff that they get to use for patients.

I left the baby with my brother at the hospital and went out to get the medicines. After I came back with the thread and other medicines, the doctors asked me to wait because there was no doctor who could do stitching. It was 7.45 now and they asked me to wait for 15 more minutes. I waited for 15 minutes and then I again asked them if the doctor had come and they again told me to wait for few more minutes. My baby was still bleeding and crying but there was no doctor to do stitching in an emergency service center of a big hospital. After an hour few junior doctors (students) came. I asked them to look after the baby and they told me that they could not do it without permission of a senior doctor. They also asked me to wait for a little more time.

I did not know what to do. I was in a hospital but there was no doctor available. Finally after an hour and a half those junior doctors decided to start stitching. My baby’s medication was started after an hour and a half of reaching to the hospital. And this all happened in BHU which is one of the biggest hospitals of Uttar Pradesh. I am also so scared of BHU like Prabhu is and I have decided that I will never ever go back to BHU for any case. I got my baby’s stitches removed at some other hospital.

All the government hospitals are in the same condition- they do not care about the people. Their employees just care about the money. BHU makes a huge amount of money. They host international conferences. People from all over the world come to BHU to do research but the reality is something different. I often hear people talking about the bad services of BHU hospital because they always make the same mistakes again and again. Most of the patients who come to BHU are poor people from out of Varanasi. It is really bad for us because health insurance is still not popular in India and most of the people do not have it. We can not go to any private hospitals because they are so expensive and these government services are awful. After this crazy experience anyone would be compelled to wonder if the hospitals are made to save the life or kill?

HIV, AIDS education pamphlet distribution

An student from University of Montana, USA had contacted me to volunteer for my organization and for housing at my guest house. I also wanted to start something for sex workers in Benares. I asked him if he would like to help me organizing some kind of program for sex workers. He seemed so much interested in my work. Although we could not do anything for sex workers because of his busy schedule in Benares and some of my unexpected work that I had to accomplish but we still distributed pamphlets during Maha Murkh Sammelan (Biggest fool Conference).

This festival is very very Benares thing and I think it happens only in Benares. It is celebrated every year on 1st of April. This year they had more than 3000 people during that conference. But since Winslow and I were the only people to distribute pamphlets, we thought to target maximum of 200-250 people. We went there, sat on the steps of Rajendra Prasad Ghat and started distributing pamphlets. We had targeted 15 to 45 year old people, but our priority was 15-30 year old. People were not interested in taking pamphlets from my hand but they seemed so interested in Winslow.

Winslow finished his pamphlets first and then I gave him most of my pamphlets also and we distributed almost 150 pamphlets. First of all we distributed pamphlets amongst the people who had come to the festival, and later we just wandered along the river and distributed some more pamphlets to young people. On the 2nd of April, Nandlal Master had organized a program which was inauguration of a water cooler, computer room and sewing machines which were donated by some organizations to Nandlal Master’s organization- Lok Samiti. Water cooler was given by Union Bank of India and other stuffs were given by some organization from south India.

Nandlal had tole me that 600-700 people would come to the program so we had planned to distribute some pamphlets there also. We reached there but unfortunately there were not much young people. They were either under 10 year old kids or over 45-50 year old people. So we better decided to not distribute the pamphlets. But Nandlal has asked me to organize some HIV, AIDS education program for his Kishori centers. Kishori center is a school run by Lok Samiti and ASHA for the girls who are over 13 year of age. There are about 10 Kishori centers and each center has about 50-75 girls.

Winslow’s friend, who had lived in Benares for a year about two years ago, knew the principal of Delhi Public School and had asked Winslow to meet him. Winslow told me about it and I also asked him to ask the school if they would let us organize a HIV, AIDS education workshop at their school. Delhi Public School is a English medium school and is fanciest school of Benares or maybe India’s. I have always wanted to work with English medium schools because their kids seems to be on biggest risk of contracting STDs. They have co-education system but there is no sex education in India.

Its a good opportunity for me to get involved with English medium schools and I am looking forward to it. It seems like Sanjeevani Booti will be busy this summer but there is a huge problem for funding and I don’t know how to solve it.

Condom usage demonstration & training to the sex workers

I, Seranna and translator

Seranna and I did something that India had never seen before. On the last day of the conference we did a condom usage demonstration in front of at least 6000-7000 people. We gave training to sex workers about how to keep themselves safe from sexually transmitted diseases and how to make money. After interviewing sex workers we realized that they did not know much about any STDs other than HIV. So I asked Seranna to talk about STDs in her presentation. We knew that she would be performing on the last day of the conference so we thought that it would be good opportunity for us to spread the message to a huge number of people at the same time.

I (look at the mask) and Seranna

I (look at the mask) and Seranna

Seranna was sad to see how poor Indian sex workers are. She said that western sex workers make a lot of money. She charges $300 per hour which is like two-three months salary of an Indian sex worker. She wanted to talk about how sex workers can make more money from their clients. I know that it will long time for Indian sex workers to reach on that standard but I think it was a good thing to at least tell them about it. On the last day of conference there were about 6000-7000 people, most of them were sex workers.

I and Seranna

Seranna and I

Since we made the decision to talk about different things in the Seranna’s presentation on the morning of the presentation day, we could not organize well. We had only a few hours to decide what we would be talking about. We decided to do a play to make the conversation more interesting. I had asked Seranna to bring some sex toys and she had brought three dildos and Seranna wanted to use them for the presentation. I was concerned about using sex toys in front of that huge number of people because sex toys are illegal in India.

I and Seranna on the stage

I asked Seranna to ask the organizer of the conference about using sex toys and the organizer said- go for it. But I was still concerned about showing them to people. So I also went to the organizer and talked to him about it and again his answer was same. Seranna and I talked to each other about what we will talk about and decided that this presentation should not be a boring conversation kind of thing. We decided to put some comedy in it, as Seranna always does. Now it was our turn to do the presentation but the problem was that audience was Bengali so we needed someone to translate our words from English to Bengali.

Seranna and I

Seranna and I

We asked the organizer about it and they provided us a Bengali-English translator. I played the role of a doggy customer who did not want to pay upfront and did not want to use condoms and Seranna played the role of a very smart sex worker. I was wearing a mask which was symbol of a doggy customer. This mask was in shape of a penis and balls. We started the presentation with Seranna asking for money up front but I did not want to pay the money first. I asked her to provide the services first but she always wanted money first. So we argued over this matter. I always say that I would pay money after services and Seranna would always say that she was selling her skills so she wanted money upfrontand finally Seranna refused to provide services.

Seranna giving message

Seranna giving message

Then I agree on giving the money first. By this we wanted to tell other sex workers to always ask for money upfront because in some cases the clients do not pay money after taking the services. After this Seranna shows the dildo and it brought dead silence into the audience.I felt really awkward doing it, but I hoped that it was useful for everyone at the conference.I wore that dildo and Seranna sat on her knee to milked it. She wanted to tell other sex workers to do the same with every client before providing services so that they can be sure if the penis is disease free.

Asking me if I felt good

Asking me if I felt good

After this she tells me to use the condoms but again I played the role of a doggy customer and I did not want to use one. I told her that I was married and she also looked safe and that is why I did not want to use condoms. But Seranna says that diseases are not written on the face. Then we talk about HIV/AIDS and other STDs and finally I agree to use the condoms. Then Seranna tells me to lay down on my belly on the bench and gave message and did a boob slide. By this we wanted to educate sex workers about how they can pass more time with their clients and how they can make them happy so that they make more money, and get even a tip.

Picking the condoms up

Picking the condoms up

After this Seranna puts the condom over the dildo by her mouth. Actually this dildo was so big that she had to try twice to put the condom over it. Here Seranna mixed some comedy by saying that this boy is big.Before this sentence the whole audience was silent but after hearing this everybody started laughing and clapping. I am sure they were also enjoying it. After putting the condom over dildo she gives a blow job. We had few toys of the STDs viruses. Seranna would act like giving blow job and then show the different toys and tell about how they spread and what they can do. I liked the way she explained about all different diseases very much.

STDs virus toys

STDs virus toys

And then she acted like we were having sex and she would ask me if I was enjoying it. This was also one very important part of this training to tell sex workers to keep talking to their clients about how they feel while having sex. This way the men become more erected and cum early (I believe in the idea of working smart, not hard). So good for sex workers. By this time our time and bench’s life was finished. It broke and we fell down on the ground and this dead silence amongst the audience turned into loud noise of laughing and clapping. I loved it.

Going to put condoms over the didlo

Going to put condoms over the dildo

At last I give her a tip for her awesome services. I believe that this kind of sex services can change the lives of Indian sex workers. I am sure that Indian men would love to have that kind of services but I don’t understand why our sex workers do not do such things. I hope this presentation helps them to make more money and change their lives. Right after this presentation we were covered by the media, social workers , sex workers and other general people. All these people wanted to talk to us. They wanted to interview us. It was so fun doing it. Maybe we will also do the same thing in the US in the coming June.