Wednesday, October 31, 2012


AADHAR
Counselling Centre for Cancer Patients & Care-givers
Aadhar is a Registered Charitable Trust which was established in 1998 with a vision to help poor children with cancer. Our goal is to ease the burden faced by the family and caregivers, by providing chemotherapy and supportive medications free of cost and also by counselling.  This year in March 2012, we have added a fund for underprivileged young women suffering from cancer.  
Over the years, working in close association with these children and their families, we felt the   need to reach out to all cancer patients in terms of latest information regarding the medical care, peripheral facilities required for rehabilitation, emotional support to the patients and families and other issues. Keeping this in mind we at Aadhar are starting a counselling centre and support group for cancer patients and care-givers. This service will be available to all who require it.
Support groups are designed to help patients feel less tense, helpless and hopeless. The support group will make an effort to -
v  Decrease patient’s sense of alienation by talking to others in similar situations.
v  Reduce anxiety about the treatments.
v  Assist in clarifying misconceptions and misinformation.
   v  Lessen feelings of isolation, helplessness and neglect by others   
The GOALS of the counselling centre are:
v  Counselling- to help reduce depression, hostility, anxiety and feelings of helplessness.
v  Education – Informing patients and relatives about the disease, its treatment and other relevant information such as common side effects etc.  
v  Answering queries patients may have about the disease and about positive health practices such as diet, exercise, etc.
v  Stress Management- Through relaxation techniques, meditation and yoga.
v  Advise on nutrition- What to eat, what to avoid, healthy and wholesome recipes, in consultation with a dietician .
v  General information such as how to get wigs and other prosthesis, information on genuine dealers who supply, on sale or hire, wheel chairs, crutches, walkers and other things required for these patient.
                                                                  
                                                                    Aadhar Counselling Centre for Cancer Patients & Care-givers
 A-4/25, Paschim Vihar, New Delhi-110063
Every Tuesday between 3-5pm
(By appointment only)
For Appointments Contact:
Dr. Rajeshwary Kulkarni : 9212034435,
Dr Aradhana Sharma : 9891955530

Friday, October 26, 2012

Aadhar kyon? (Why we established Aadhar?)


Ever since Aadhar started, I have met so many people with my bhiksha patra (begging bowl) in hand. I have got various responses. Lots of people have wholeheartedly supported us. Not only with funds, but also with advice, volunteering and with tremendous faith that I am honest in all my dealings with their hard earned money. But there were also those who felt that they did not want to support cancer patients because they were not sure if the patient would survive.

Why I started this cancer fund is what I am asked lots of times. So I sat down to think about what really deep down motivated me to do this work. To tell you the truth, when I was diagnosed with lymphoma it devastated the people around me so much that I did not have the time to sit and mope around for myself. Just looking at them was bad enough. But later as the treatment started, I went through a lot of feelings of guilt and sadness because I felt I was the reason for all of this stress, uncertainty and anxiety. At the same time there was a deep thankfulness in my heart that whatever happened had happened to me and not to my children or my husband or my brothers. As the treatment started the visits to the hospital were like a mini nightmare. We had to stand at least an hour or so in the line to see the oncologist. This was after we already had an appointment and the oncologist was kind enough to see us asap  as we were both doctors. It was a learning experience especially for Avinash. In his clinic patients had to wait to see him. And here he was waiting to see what the doctor had to say. But watching him being rudely spoken to or ignored by staff in the government hospital was one of my worst experiences. I used to feel terrible that because of me he had to go through all this nonsense. Then the bills started. I have to say that the cancer did not cause a single symptom. No pain, no fever, nothing. Only a painless lump. I used to take my chemo cycles in our own nursing home with caring and concerned people hovering around me. Even then I had a lot of stress and anxiety before each cycle. After the first 6 cycles I took interferon injections daily for one year. Each injection was Rs.1500/- at that time. Cost of more than Rs 40,000/- a month. (We managed to get some discount) . I used to feel terrible. I was working only as much as I could manage. But each month this money was being spent on my treatment. And this was only the cost of the medicine. No one said anything to me. My every wish was fulfilled immediately. But I used to feel a deep sense of guilt at the trouble I as causing.

I used to think all the time about all the people who I saw in the OPD. They were all mainly middle class and poor patients.  They were pushed around and had to wait for hours for their turn. If the time finished, they would just have to come back for the next OPD 2-3 days later. Then they would be handed the prescription and told to buy medicines from outside as they were not available in the hospital. Where would a person buy medicines worth thousands, if his or her salary was only 4000/- to 5000/-? This was not the only claim on his /her salary. What about food, house rent, school fees of the children? We were well off. Still 40,000/- a month was a job. How would a young parent or a villager who had come from outside Delhi or a salaried or retired person manage?? In such a situation how guilty and stressed would a patient feel, is what I always used to think!  In the hospital I met a woman with stage 4 cancer in the hospital, who did not come earlier because she had no money for treatment. The wonder of it was that this lady who I thought was going to die in a few weeks, survived for 5 years when we raised money for her treatment. Then there was a 20 year old boy whose father had retired. He could see that they would not be able to afford the treatment. But his father was running from pillar to post trying to collect money. The poor child walked up to the roof and jumped off. Imagine his sense of despair and guilt. I used to feel terrible when I saw all this. Imagine if I felt guilty when everything was easy and available, what would a less fortunate person feel?
There were a lot of emotional support groups working there. They were doing a very good, kind and sympathetic job. And emotional support is extremely important. But…. What is the point of telling a person dying of thirst or starvation that all will become well with time. Would it not be better to give that person a little water or food instead?
I had joined an emotional support group for some time. We used to visit hospitals and see cancer patients and talk to them. It was excellent in its own place. But for me it was a little frustrating. I decided to start whatever I could do with whatever amount I got or could put in. Many of our well to do patients wanted to sponsor a poor person’s treatment. So that’s how I started. One patient at a time.  My close friends were my greatest supporters. Six of us - three doctors, two lawyers and a chartered accountant started this venture. Since then slowly and steadily we have been collecting money in small and large amounts and helping patients go through their treatment by providing support in the form of medicines and counseling. Aadhar started with Rs.3000/- (Rs.1000/- from each couple as first donation).The target group we chose was children. Hence the Child Cancers Fund.
But over the years we have raised more than Rs 1 Crore for the aid of patients with cancer. All this money has come from individual donations. We have had no major government or corporate donors.

And that is why….!

Friday, October 5, 2012

Success Stories.

Back to writing after a long time. I have been meaning to write about this for sometime but was not finding the time.  Someone asked me about the success stories of Aadhar. When I sat down to think about it I realized one thing. Not just in cancer, but in any life threatening condition,I think it is the journey which matters and not whether one eventually wins or loses. In sports it said that  " It is not whether you won or lost , but how you played the game." I think in these major challenges in life also it is true. Whats important is how you went through the storm.
All these children who come for support and their parents are like teachers for me. Illiterate, poor people coming from places you haven't even heard of and who have never stepped out of their villages find their way around a huge city like Delhi.For the sake of their child, they will find a way to reach Aadhar or some other organization which can give them help to get medicines they cannot afford otherwise.And they strive and struggle to carry on.Sometimes it is only the  mothers who are bearing the entire burden. Husband is a drunkard or has simply disappeared.She has to manage on her own. I have seen fathers who take to rickshaw  pulling to earn money for food. Once the chemo is over, they stay on the pavement outside the hospital till the next cycle.
 Blood is required so many times. Once the close relatives have donated, they have to make other arrangements. My uncle recently needed to get multiple blood transfusion for his medical condition. After all at home who could, had donated I was under huge pressure to figure out whom to ask. Its really difficult. But these parents do that. They ask, beg , request anything for their child. One man was talking to me and just burst into tears. He said -- "Ab tho dost bhi muha chupa ke nikal jaate hain. Sochte hain ab ye khoon mangega."
What would be a success story ? Just when a child becomes cancer free and grows up to become an adult.
I feel it is so unfair to negate the efforts of all these other souls. I am going to write about patients who were truly remarkable and who were an example for others whatever the eventual outcome was.