Hitaishini
"HITH" in Sanskrit means "well being" or "kalian" and one who is involved in the well-being of others is a Hitaishini. Indeed, the volunteers of Hitaishini have kept true to their motto.
HITAISHINI is a voluntary non-profit Breast Cancer Support Network, the first of its kind in Eastern India. It is a forum member of Reach-to-Recovery International, headquartered in Queensland, Australia and one of the founder members of Cancer Care India, New Delhi. Its member volunteers are composed of breast cancer survivors and socially committed women. It runs Breast Clinics, attached to Hospitals and Cancer Centres in and around Kolkata, to provide psychological, emotional, medicinal and rehabilitative support to women afflicted with breast cancer. HITAISHINI also conducts Awareness Camps, Seminars, Workshops and 'Walks' to propagate knowledge about breast cancer among the masses.
Since most of the volunteers have either been victims of breast cancer or have lost a dear one because of the dreaded disease, they share a special bond with the patients who go there for medical help and counseling. Take for instance Dhira Bose , who gives massage therapies at the centre, says that her husband and two sons had supported her throughout her own treatment and now she wants to help those who lacks it. Chaya Das, a woman in her late sixties says couldn't agree less and she claims to have utmost faith on the Hitaishini didis. But unlike Chaya, whose grandson is her pillar of strength, most of the patients who seek shelter under the care of Hitaishini, belong to the lower strata of the society and their families have abandoned them and left them for dead. That is where Hitaishini really makes the difference.
WEBSITE: www.hitaishini.org
WILL YOU JOIN THIS WALK NEXT TIME?
Aparna Sen
Q. Your comments on the initiative taken by Hitaishini...
What is wonderful about this initiative is that the ladies in Hitaishini who are cancer survivors have turned their personal experience into something for public good. They are there with the patients to help and advise them and even aid them financially. I think Hitaishini has been doing an excellent work for a long time and it continues to do so.
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Vijaya Mukherjee
Q. What are the most common misconceptions about breast cancer?
Many people think that it is contagious and non-curable and that it always results in death. There have been instances where the husbands have abandoned their wives and daughters for the fear of social stigma. Moreover breast cancer is not only limited to women. Men too can get afflicted by it. In their case it spreads very quickly to the internal organs and is fatal most of the times.
Founder President Q. What precautions can one take?
One should exercise regularly, control obesity, and not eat very oily and fatty foods frequently. Girls should also have regular breast self-examination.
Q. As a student what do I have to do to get myself diagnosed?
You should have regular breast self-examination every month. It is a procedure through which you yourself examine your breasts on the fifth day of your menstruation. You should not do it before because then the breasts are heavy and many glands are tender so you might be misled. After menstruation the breast comes back to its original shape and form. If you examine yourself you might be able to detect any abnormalities such as a tumor or discoloration or the nipple is retracted, i.e., goes in or if there is slight discharge from the nipple or you have an ulceration which is not healing even after a month, it is then that you should come to a proper experienced doctor for a clinical checkup. Then the doctor will advise you if you need help.
Q. Is there any age limit for breast cancer?
There is no age limit. Actually, previously it was thought that after the age of forty, women are more prone to it but now girls as young as twelve years are getting afflicted by it. Girls are having their puberty much earlier, sometimes when they are eight or nine years and the menopause is coming much later so the fertility period is much longer and the hormone estrogen is working virulently in your body. Estrogen is the hormone which gives a woman her womanliness and her comeliness but estrogen also helps the breast cancer cells to develop very fast.
Women should have their first child before they are thirty. Nowadays we want our daughters to get a job and be independent before marriage, and once they have a good career the daughters themselves wait for the next promotion or transfer. Thus the marriage gets delayed and so does pregnancy which gets shifted to thirty two, thirty four and even thirty eight when women are conceiving for the first time!
Q. Is there any connection between pregnancy and breast cancer?
There is but it is a medical condition and the doctors would be able to advise you.
Q. Tell us about the structure and functioning of Hitaishini.
It is very simple. It started as an emotional support group where a breast cancer survivor is interacting with a breast cancer patient who has come to us with a lot of doubts about life after cancer, radiation and chemotherapy, emotional and psychological support. Now there is also a physical aspect. In some cases there is breast conservation but in a majority of cases, after operation the woman loses her breast. Her confidence is shattered and it is a traumatic experience. You come out into the world and suddenly you feel that thousands of eyes are on you. You feel like a freak. I've felt it myself. It's terrible.
Q. How did you overcome the trauma?
When I came out of the hospital, the umbilical cord of the shelter was cut and I felt that people were looking at me. I dashed into the car and refused to meet anyone. At home I cocooned myself and immersed myself in books, magazines and watching TV. Every day I had to face my fear, my loss. There was no one to tell me that there is a life after cancer. Then when I attended a cancer workshop in Delhi, I found the answers to my previously unanswered questions. I wanted to pass on the message to other survivors so that they can lead a better life and have their questions answered.
Q. You had also mentioned some special garments...
Yes. When the mastectomy takes and the breast is fully removed, it is a traumatic experience for a woman. So to give them psychological support, we have artificial breasts and special brassieres for them so that when they leave the clinic, they have their heads held high and do not have their arms crossed in front of them or wrap their pallus or shawls around them, and can smile and walk like a normal woman.
Q. Are they very expensive?
Not much. The ones we have here are brought from Delhi are quite affordable and within six hundred rupees. There are also imported ones and we do not stock them because they are expensive but we do give the contact number of places where they are available if anyone is interested.
Q. Do you face paucity of funds?
Yes. We ask for donations from everyone. This is an appeal to every single person. Even five rupees is welcome because with this money we buy medicines for patients, we provide them blood and if there is an emergency and the person can't afford the bed, we pay for the bed so that they can have their OT. Suppose a cardiologist is needed and there is no cardiologist, then he has to be brought from outside and we pay for him. If anyone is interested in learning life skills we arrange for that also. Cancer is such an ailment that it makes a pauper even out of a person from a very affluent background.
Q. Finally, your message to the readers...
My message would be don't be scared of cancer. Fight it. Be aware of your body and come to a doctor without hesitation and fear. Do not think that a woman has to hide everything within her. She has a right to live a full and enriched life.
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Q. How did you join Hitaishini?
Back in 1999 my boss's husband's wife was the President of Hitaishini. Seeing my inclination to do social work she invited me to this organization. Back then it was a small organization with very few people in it. Seeing everything, I wanted to help out the sufferers so I joined the organization which grew despite many initial hurdles.
Q. What kind of hurdles?
The hurdles are mostly financial. So many people came here from villages and rural areas and sometimes it becomes a financial constraint to help all of them. Moreover we do not have any Government aid.
Q. What is the response of the people?
The people are coming. Still the awareness is lacking especially in rural areas. We should have a minimum social commitment towards cancer patients because cancer is now a notifiable disease. People comment "How long will they survive?" and "Cancer has no answer". Such rumours make them think "So why should I spend so much money for the cancer patients?"
Q. What are your future plans for expansion or awareness?
October is the Global Cancer Awareness month. We have walks and spread awareness through banners and posters. We also want to open a palliative unit for cancer patients.
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Q. What causes the hands to swell after the operation?
Nupur Chakraborty The lymph nodes are cut off. As the lymph comes down, the swelling starts. That's when massaging helps. Lymphedema of the arms is very severe and we do not know how much it will be cured but we try our best to provide relief.
Q. What is the duration of the massage? Secretary
The massage is given for fifteen-sixteen days after the operation and then it's as and when required. Pneumatic Arm Pressure Machine is also used for 30-45 minutes in order to relieve the pain.
Q. Are there any restrictions?
You cannot keep the hand hanging down or lift any heavy weights. This pertains to only the affected hand.
Q. Tell us about your experience as a survivor...
When I first came to know that I was afflicted by breast cancer, I thought that I must have committed a sin so I'm getting this punishment. But the doctors were very good. My husband, sons and relatives stood by me. Everyone was very supportive and I started becoming normal. The whole treatment takes about five years.
Q. you had the support of your family. Not everyone has that....
Yes and in that case we are there. We support them and tell them how we had overcome it with time. After my distress was over, I had promised myself that I must stand by others afflicted with the disease.
Dhira Bose Volunteer and message therapist
MALE BREAST CANCER
Oh yes!! Men get breast cancer. And while the incidence rate accounts for less than one percent of all breast cancers; it's a disease that occurs as frequently as other known ailments in men, including acute lymphoblastic leukemia and chronic myeloid leukemia.
"It's a relatively small number - a little over 2,000 cases per year - but it's not zero." Men, who are diagnosed with this disease, have an inferiority complex and they are ashamed to talk about it. No, my friends, there is nothing to be ashamed a man has breast cancer. You should be proud and have courage to fight it.
What's more, that rate is increasing at about one percent each year. "Male breast cancer is often diagnosed at a later stage than many female breast cancers."
Now why does this happen? - It's no secret that men often ignore symptoms and put off doctor's visits. Moreover, breast cancer in men carries a stigma that often leaves them embarrassed to talk about breast health concerns. "Men feel that the diagnosis makes them in some ways more feminine and less manly."
Come-on, friends, which is manlier, fighting a disease or hiding a disease? Men are known to be fighters. So be a fighter, and never hide any symptoms from your doctor.
A lot of men simply aren't offered medical consultation, even though they benefit from the same multidisciplinary therapies as women, including surgery, medical oncology, systemic therapy and radiation oncology. What is require here is, greater awareness of and study of male breast cancer.
It could surely pique your feelings if you learn that you have a rare type of disease. And how could you deal with it if you are a man to have a breast cancer? This is usually occurs in men who are positive with breast cancer. Of all people why you're chosen to bear this situation? But you need guts and audacity to fight even the rarest of the rare diseases and a salute to all of them who have fought this disease.
We need to separate breasts from women only and associate them with human beings; we're talking about an organ that occurs in everyone.
Kalicharan Shaw
