Awareness should be a two-way street

It gives us great pleasure to note that HITAISHINI NEWSLETTER, now in its second issue of publication, has been well received by our friends, associates, fellow organizations, and of course, our well wishers in the medical fraternity. We are encouraged by their good words and support. It is our sincere desire to develop the Newsletter further by carrying news on breast cancer and its treatment, reports from and on survivors about how they are coping with the disease personally and socially, experiences of our volunteers and caregivers, and activities of "Hitaishini," so that it can become an important channel of communication between patients, survivors, and caregivers on the one hand and the society at large on the other.

Over the past 14 years, through the untiring efforts of our members and volunteers, blessings of our patients, and the cooperation of our friends, Hitaishini has established itself as an important breast cancer service provider in eastern India. Our activities are growing day by day and the number of patients who come to our clinics is steadily increasing. We are indeed lucky to have all the support from the doctors and authorities of the Chittaranjan   National   Cancer   Institute   and   the Cancer Centre Welfare Home and Research Institute at Thakurpukur in sustaining our activities.

It is also very encouraging that more and more people are now coming round to support us and participate in our activities. Our volunteers, both survivors and other caregivers, form a very emotive team, able to develop an immediate bond with patients and give them the necessary emotional support. Heartening also is the fact that we are getting interns from different colleges and universities, even foreign universities, coming and training with us hands on to fulfill their course requirements. We hope some of these relationships will be lasting.

We have many challenges ahead. One of the foremost among them is the task of spreading awareness about breast cancer, and how to mitigate the disease through early detection, among women coming from various age groups and from various classes in society. Holding awareness camps is a regular activity for Hitaishini. We want to expand this activity as best as we can. At the same time, it is our intention to make awareness a two-way street. While we go and talk to women in remote places, we want to ensure that women who attend our camps will keep in touch with us on a regular basis, too, to bring up their questions and problems as they arise from time to time. Without a regular channel of back and forth communication, the benefits of our campaigns will not be fully realized. We hope, with the help of our donors and well wishers, we will be able to establish a system to facilitate such communication.

We the Volunteers
Vijaya Mukherjee

Hitaishini : this name is now quite familiar with doctors who are involved, even distantly, with cancer. A group of dedicated ladies have joined hands to lend support to those women afflicted with breast cancer.

Who are these ladies? There are those who have undergone the trauma of breast cancer, lost a breast (in some cases, both) which is a trauma by itself, gone through the tortures of cancer treatment and its subsequent aftermath, and being fully aware that the cancer might come back, has to undertake bothersome checkups every year, awaiting the dreaded verdict that the cancer has come back- which shatters our world into a million pieces.

Yet, they are there to give peer support to the breast cancer patients who crowd into our clinics. They share their experiences with them, emotionally boosting them up with a positive attitude to fight cancer. This is the take-off base, the foundation which is strengthened by medicinal, financial, physical and re­habilitative support.

Ow! Bravo! These are the comments that the rest of the world   makes   regarding   these death - defying cancer survivor volunteers. Undoubtedly they are a brave lot to come out of their affliction and help others, struck by the same disease.

But, they also need support in their turn - for their work as well as for themselves. And this is provided by the other half of Hitaishini volunteers - the Care Givers. And who are they? - You may ask.

They are the women who are home-makers, like you and me but are driven by their conscience and commitment to society. They heard about Hitaishini - the work done by it and they came to join hands with the Survivor volunteers. To put it in one such volunteer's words, "If a cancer afflicted person can achieve and give so much from the heart, why can't a healthy person like me contribute equally?"

One cannot but applaud such commitment and selfless attitude. And it was with a great sense of camaraderie that the Survivor Volunteers found sister volunteers to share their work with, on an equal footing. It is indeed not easy to empathise, though sympathy comes easily. When a survivor falters, health not permitting, she is assured of complete support from her sister care-givers, who also shoulder the work willingly.

The work of building Hitaishini gradually over the years is shared by all the volunteers. Collecting donations, editing brochures, souvenirs, newsletters, equally shared work in clinics and hospital wards, conducting awareness camps, arranging seminars, walks and Interactive sessions - without the care givers, the survivor volunteers would have found it quite exhausting to run around and arrange everything by themselves.

The inspiration that the Survivor Volunteers provide is complemented by the dependence the survivors have on the Care Givers. The two sets of volunteers are the two halves of a complete whole which is Hitaishini.

Hitaishini shows the breast cancer patient that there is a new dawn awaiting her at the end of the arduous dark tunnel of suffering. Together the volunteers hold aloft the garland of lotus flowers symbolising life itself, serenity and inner peace, thus helping to light up the dark future of a patient with the myriad lights of hope again.

Stages of breast cancer

• Stage 1 means that cancer cells have not spread betond the breast and the tumour is not more than about an inch across.
• State 2 means that cancer cells have spread to underarm lymph nodes and / or the tumour in the breast is 1 or 2 inches across.
• Stage 3 is locally advanced cancer. The tumour in the breast is large (more that 2 inches across), the cancer is extensive in underarm lymph nodes, or it has spread to other lymph node areas or to other tissues near the breast.
• State 4 is metastatic cancer, having spread from the breast to other organs of the body.

Secretary Speaks
Nupur Chakraborty

"Supporting One"- is a big banner, where we all can assemble and try to satisfy our "self. Because of this people have lost interest in social work. Most of the time when we try to help others, we think that we are helping a person who is weaker than us. But it is completely wrong thinking. I think, especially in cancer cases, circumstances, social position etc. makes the person weak, devastated. Total rejection from the society makes the person perplexed and mum. Under this situation, the support group plays a vital role. "Forgetting One's Own Self - is the keyword of support group.

In Hitaishini, survivors and social workers work together to ease their pain. When a cancer patient meets a survivor, no doubt instantly he or she rejuvenates. Because they know that they are in the same boat. They have the same feeling; have gone through the same traumatic phases.

Leaving behind the comfort, enjoyments in leisure time, social   workers   extend   their hands of support to the cancer patients and/or to the survivors, which speaks of their empathy and dedication. After nine years of experience in Hitaishini, now I can feel the touch of total dependence, reliance of the survivors on social workers. They feel at ease crossing the hurdles they face during this ordeal, with me. It is not necessary to be a cancer victim for holding hands of cancer sufferer. I think proper attitude and proper training, in a word a total gesture of a social worker, works amazingly. Compared to abroad, the infrastructure of our country does not permit us to restrict our work only by the survivors. Here, most of the time cancer victims want to hide their disease for various social reasons. We have to be more flexible to have more social workers for extending this support service. I this be so, then why there should be any discrimination between "survivors" and "social workers"?

My mission is to establish a group of volunteers, consisting of both survivors and social workers, focusing simply on spreading messages to eradicate the fear of cancer and to fight back against social stigma.

Conference on cervical cancer

The Asia Oceania Research Organization on Genital Infection and Neoplasia (AOGIN) held its biennial conference (interim) at Hyatt Hotel in Kolkata from 24 April to 26 April 2009. The theme of the conference, hosted by Chittaranjan National Cancer Institute, Kolkata, was cervical cancer. Women participants from various organizations took part in the discussions on strategies that should be adopted in fighting the disease.

India has a population of 366 million women, aged 15 years and above, who are at risk of developing cervical cancer. It is estimated that, every year, over 1.3 lakh women in the country are diagnosed with the disease and over 74, 000 of them are said to die of it.

The purpose of the conference was to generate public awareness of the risks of cervical canger and educate everyone on how best to prevent it. The organizers also announced they would try to make the vaccines for preventing cervical cancer available as widely as possible. They pointed out that vaccination can prevent infection from HPV (Human Papilloma Virus), the cause of cervical cancer, for at least five to six years, if not longer.

What is chemotherapy and radiation?

Chemotherapy is the use of drugs to treat cancer. In our body, normal cells grow and die in a controlled way. Cancer occurs when cells become abnormal and keep dividing and forming cells without control or order. Anti-cancer drugs (Chemotherapy) destroy cancer cells by stopping them from growing or multiplying at one or more points in their life cycle.

Radiation is a special kind of energy carried by waves or streams of particles. It can come from special machines or from radioactive substances. The use of high-energy rays or particles to treat disease is called radiation therapy. High doses of radiation can kill cells or keep them from growing and dividing. Radiation therapy is a useful tool for treating cancer because cancer cells grow and divide more rapidly than many of the normal cells around them.

Dr. Saroj Gupta, Director, Cancer Centre
Welfare Home and Research Institute, Thakurpukur, lighting candle on National
Cancer Awareness Day.

Eminent painter Rabin Mondal
lighting candle.

Artists lend support on National Cancer Awareness Day

Hitaishini observed the National Cancer Awareness Day on 7 November 2008 at an emotion-packed ceremony at the Cancer Centre Welfare Home and Research Institute (CCWHRI) at Thakurpukur. Survivors, caregivers, friends and well wishers gathered in memory of those who are no longer with us wishing total recovery to those still fighting the disease.

Dr. Saroj Gupta, Director of CCWHRI, was personally present at the function to give us encouragement, despite his being unwell at the time.

The highlight of the event was a painters' workshop, where several eminent artists came at Hitaishini's invitation and painted canvases as a gesture of their moral support for our activities. The artists, belonging to Calcutta Painters, were Rabin Mondal, Bipin Goswami, Isha Mahmmad, Dwijen Gupta, Tapan Mitra and Shyamasree Basu. They displayed their works to the audience and offered to share a portion of the proceeds if and when they are able to sell them. Two other artists, Debarata Chakraborty and Dipti Chakraborty, could not attend the workshop but worked at home and made similar offers. Hitaishini is grateful to the artists, whose presence was a great inspiration to all.

Nutrition therapy for cancer patients
Paromita Das Dutta

Chronic energy deficiency (CED) is often seen in Indians before the onset of cancer. Malnutrition gets aggravated with the development of invasive cancer. Patients with cancer in the digestive tract, respiratory tract, and the head and neck regions are the most vulnerable. Malnutrition lowers immunity, delays wound healing, and causes loss of muscle mass and muscular weakness. These primary changes lead to increased morbidity, mortality, hospital stay, and costs. Adequate nutritional support is, therefore, necessary. Like any medical disease, the first step is to diagnose malnutrition early.

Among the common causes of malnutrition in cancer patients are : organ dysfunction, drugs and medications, depression and anxiety due to major illness, new and unfamiliar hospital environment, change in meal times, different kind of diet, learned food aversion, and unsympathetic hospital staff.

Nutrition   support:   The initiation of nutrition support is based on the standard guidelines and not by the presence of cancer. Well-nourished patients don't worsen during cancer treatment. For malnourished patients, the therapy should begin without delay.

The following symptom-based guidelines should be followed during the treatment:

1. Anorexia : Frequent small quantity meals ; nutritious snacks and drinks between meals; supplementation ; appetizers.
2. Nausea Drug therapy with ondensetrone, etc.: Avoid cooking smells and foods with strong odours; short exercise, including walk before meals; dry meal, with drinks taken separately; biscuits, dry toasts, and cold foods ; avoid very sweet and very fatty foods.
3. Dysphagia : small frequent feeds with soft and liquid diets; nutritious drinks and aerated drinks after food; altered taste, avoid foods that worsen the unpleasant taste.
4. Diarrhea : Low fibre diet with high fluid intake; avoid lactose containing food : avoid medications, including tonic elixirs.
5. Malabsorption : low fat and fibre and roughage; light exercise.
6. Constipation : Increase dietary fibre and roughage; light exercise.

The calorie and protein requirements are usually estimated using standard formulas. From a practical viewpoint, it is difficult to deliver large amounts of nutrients estimated by these formulas in acutely ill patients. The pragmatic appoach is to deliver somewhat less energy with the immediate aim of weight preservation rather than weight gain. As a rule of the thumb, an average Indian would require 1,500 calories and 60-70 grams of protein per day. When a patient is able to tolerate such a diet or feeds for several days, an increase in the nutrients may be considered. Precise nutritional estimates become mandatory when patients are deteriorating on standard support. The energy and protein delivery is increase gradually depending on the ability of the  patient to tolerate  such increases.

Home nutrition : Nutrition support at home is an integral part of cancer care. Food hygiene is of utmost importance to patients receiving immuno­suppressive treatments. Purchasing, storing, and cooking of foods need proper attention. Eating of raw eggs, unprocessed milk, uncooked vegetables, and foods that may be contaminated with infective agents should be avoided. Keeping the kitchen clean and dry and hand-washing practices at home are equally important.

Unscientific nutritional advice is freely available from relatives, friends, and the media. Most patients change their diet drastically when cancer is diagnosed. There is little scientific evidence to support a need for such changes. Cancer patients often seek alternative therapies that promise dramatic cures with no side effects. Dietary manipulation is the commonest type of alternative therapy. The dietary therapy for cancer shares a philosophy that a poor diet caused cancer and a good diet can cure it. Most diets are strict vegan, sugar-free, salt free diets, vegetable and fruit juices, with large amounts of raw foods and high doses of vitamins. These diets are often unpalatable, difficult to prepare, and costly. By following these diets, patients may feel that something active is being done. What is really important is that the net benefit from such diets (useful for weight reduction) is less than the net harm. Oncologists help to perpetuate this by avoiding routine nutritional advice to cancer patients.

Nutritional therapy should be an integral part of the treatment plan of all cancer patients. It starts with routine screening of all patients to identify those at risk. Cancer patients must eat enough food to maintain weight and to recover from the effects of various treatments. Optimum weight should be maintained by under-weights gaining and over-weights losing weight. Patients must follow the dietary advice seriously. For the majority, adequate intake of calories and proteins can be achieved by dietary modification and using food supplements.

- Paromita Das Dutta is Dietitian at the Chittaranjan National Cancer Institute, Kolkata and Secretary, International College of Nutrition, Kolkata Chapter.

Trainee volunteers

From time to time, Hitaishini receives requests from students pursuing academic courses for practical volunteering experience. We are happy to have had the following trainee volunteers with us at various times lending valuable assistance to our activities.

• Tilottama Mukherjee, while a trainee volunteer with Hitaishini (1999-2001) was doing research work on Psycho-Social Variables of Breast Cancer Patients. She was introduced by Prof. (Dr.) Maqsood Siddiqi, then Director, Chittaranjan National Cancer Institute.
• Paula Chatterjee, a student of sociology from Yale University, came to us for training, having found about us from our Website, (www.hitaishini.com)
• Sreenanti Banerjee was 3rd year sociology student at St. Xavier's College, Kolkata, when she came to us for her practical training and worked for a few weeks.
• Nihar Ranjan Pal, professor of pharmacology at Dr. B.C Roy College of Pharmacy and Allied Health Service, Durgapur, West Bengal, is currently with us. Prof. Pal is working towards his Ph.D. programme and aims at optimizing the quality of care of breast cancer patients at Chittaranjan National Cancer Institute.
• Zeenat Mehzabin, a post-graduate student of sociology at Rabindra Bharati University, is working with us and hopes to be one of our regular volunteers in future.
• Priyaya Chowdhury holds a master's degree in sociology from the University of Assam, Silchar, and has come to us for a few weeks to fulfill her social work training requirement.

Patient care highlights, 2008-2009

• We attended 899 patients, counseled them, showed post-operative arm exercises, and gave necessary information through our pamphlets.
• We gave artificial breasts (prostheses) and special brassieres to 115 patients to help them get back to normal life.
• We offered medicinal (chemotherapy, radiation, different tests, etc.) and financial help to 388 patients.
• We attended 20 lymphoedema patients and offered massage through our pneumatic arm pressure machine.
• We helped a patient to start a small business as a means of rehabilitation. We are also helping the son of one of our patients with books and tuition fees to pursue a course in engineering.

Hitaishini organizes awareness programmes as an integral part of its activities.

Survivors' Day
Dhira Bose

Winning a long battle against the dreadful disease, a great joy fills the heart of a cancer survivor.

"Yes, I have won! The struggle is over. I have got a new life! I'll live again with my near and dear ones. I'll enjoy every moment of my life and not waste a single day by doing any unwanted job." This is an earnest desire of a survivor.

A survivor can take an oath on Survivors' Day :

"I'll come forward to create a light of hope in their eyes, to awaken up the strength of their minds so that they can enjoy their lives, they can love more deeply this beautiful world after surviving."

Survivors' Day brings an thrilling feeding in a survivor's life.

The second Saturday of February is celebrated as the Survivors' Day in India.

Hitaishini, - a breast cancer support service organisation, invites the breast cancer survivors every year on Survivors' Day. Hitaishini arranges a picnic for survivors somewhere around Kolkata to exchange their feelings, ideas and expressions among themselves. They get a small gift also from Hitaishini, which they appreciate very much and wait eargly for the next Survivors' Day.

This year Hitaishini joined with Cancer Centre Welfare Home & Research Institute, Thakurpukur to celebrate the Survivors' Day.

The very presence of Dr. Saroj Gupta, the eminent founder of Thakurpukur Cancer Hospital, was the most eventful & inspiring event to all cancer survivors & patients. The other doctors also inspired with talks on new methods of treatment & medicines for this dreadful disease.

The other inspiring event was the presence of Srimati Saonli Mitra and Srimati Arpita Ghosh. Srimati Mitra narrated the experience of her own life & how she overcame those dark days.

Incidentally both her parents died of cancer.

Hitaishini's members - the survivors & caregivers' - sang a Tagore's song:
"Kon aalote praner pradeep jaliye, tumi dharay aasho ………"

Each carrying a lighted earthen lamp (pradeep) in both hands. This was to symbolise their involvement in social services for breast cancer patients upholding the ray of hope and enlightenment for all.

My Story

Debashish Das
I am Debashish Das. I am from a middle-class family. My dream in life is to be an engineer. I am a student of Ramakrishna Mission Diploma Engineering College, studying electronics and telecommunications engineering.

When I was planning to study engineering, my mother got sick. She had breast cancer. That was when we got in touch with "Hitaishini" and approached them for support. They not only supported my mother's treatment - she is doing well now - but also went out of their way to help me financially to support my studies. I am so grateful to "Hitaishini." They are my mentors, guardians, everything. Thanks to all of them.

I believe that hard work is the way to all success. I am doing best to fulfill my own dream and that of my mother, to be worthy of the faith she has reposed in me. With the blessings of all, I hope one day to be successful in life.

Minati Mandal is a breast cancer survivor, who has received financial help from Hitaishini as part of its social rehabilitation programme. Minati now owns a modest garment business, developed with the assistance we provided her.

A Guide to Medical Terms

Variety programme

Hitaishini organized a variety programme on 7 June 2008 at the Kalamandir Auditorium in Kolkata on the occasion of the 13th anniversary of its founding. Dr. Dulal Basu, the well-known ENT specialist and the then Sheriff of Kolkata, was the chief guest of the ceremony, while Raja Sen, the eminent film director, was the guest of honour.

Speaking on the occasion, both Dr. Basu and Sri Sen commended Hitaishini for its work in providing psychological, emotional, medical, and rehabilitative support to breast cancer patients, many of whom come from the economically distressed classes of society. In light of the fact that breast cancer cases have been steadily on the rise in recent years, the speakers wanted everybody to come forward to help Hitaishini expand its activities further.

The evening was enlivened by a dance recital presented by the famous danseuse Priti Patel and her troupe and a musical presentation by the popular Bangla band Bhoomi. A short documentary on "Hitaishini's mission and activities was also shown.

Cancer
When I come to terms with you
My chance to live is wee and few
Though humans know that death is due
As soaked in grass like drops of dew.
And yet there is a hope so blind
Which burning like a light so kind
That kindles candles searching mind,
A cure to death which we must find.
Still struggling on we strive with strain
For meddling up with human brain
That's towering for a shower of rain
Of remedying cures that's shattering grain.
So on we live with mighty hope
That keeps a look for every scope
To find a wondrous unique dope
That would bless us all like the Pope.