Volunteers
and friends of Hitaishini observed National Cancer Awareness
Day on 7 November 2007.
Top photo: Popular movie actor Chiranjeet flagging off the
Awareness Day Walk. Above: Taj Halim, wife of the West Bengal
Assembly Speaker, lighting a ceremonial candle.
A platform for the support community
VIDYA PAL
AS WE step into our teensk on the road we have traveled
and the route that lies ahead, we offer this inaugural issue
of Hitaishini Newsletter – a mix of news, views, reports,
and reflections. We hope it will develop into a platform
for the exchange of information and expertise in this field.
We invite our sister organizations to share with us any
innovations in volunteer training that might have helped
them and could be useful to us. We look forward to hearing
from breast cancer survivors, volunteers, and health professionals
about challenges they face.
Twelve years old, Hitaishini is the only breast cancer support
network in eastern India. We have recently started a new
breast cancer support clinic at Netaji Subhas Chandra Bose
Cancer Research Institute, 16A Park Lane, Kolkata 700016
in addition to our existing clinics at Chittaranjan National
Cancer Institute, 37 S. P. Mukherjee Road, Kolkata 700026
and Cancer enter Welfare Home & Research Institute,
Thakurpukur.
At these clinics, our volunteers guide patients about hospital
procedures, help them fix appointments with doctors, teach
patients post-operation exercises to avoid frozen shoulder,
and use the pneumatic arm pressure machine to manage lymphodema.
To the extent possible, we bear the cost of therapy and
medicine and provide breast prostheses at a cost. If required,
our volunteers, many of whom are breast cancer survivors
themselves, offer psychological counseling and help patients
rehabilitate themselves in society.
Raising public awareness and removing misconceptions about
breast cancer are a major part of our activities. We organize
seminars and workshops to bring the concerns of breast cancer
patients to the attention of the public.
We regularly hold awareness camps in Kolkata and the districts,
where volunteers demonstrate breast self-examination techniques
to detect breast cancer at an early stage. We use audio-visual
aids and printed material to spread the message that cancer
is like any other disease. It can be mitigated by following
an appropriate lifestyle and even cured if detected early.
Messages
:
THE
EXCELLENT endeavour of Hitaishini has attained such great
reputation that the organization no longer requires an introduction
in and around West Bengal. For over ten years, the organization
has been extending support and counseling to breast cancer
patients of the Cancer Centre Welfare Home and Research
Institute and many more health centers in the state. Their
help and counseling render great impetus to breast cancer
patients, yielding fantastic results.
The organization’s new venture to launch its newsletter
is being highly appreciated. It is expected that the same
will be further helpful for the guidance of breast cancer
patients and others involved with the treatment.
I wish Hitaishini and its publication all success.
Dr. Saroj Gupta
Director, Cancer Centre Welfare Home and Research Institute
I
AM HAPPY to know that Hitaishini is publishing a newsletter
for spreading awareness about the dreaded disease of cancer.
Hitaishini is an NGO which stands beside every woman suffering
from cancer, particularly breast cancer, and I applaud its
effort. Prevention is better than cure, but patients who
are already suffering from the ill effects of the disease
and its therapy need maximum support from all of us.
This new venture of Hitaishini of publishing a newsletter,
to comprise articles by eminent oncologists, experts, and
scientists, is truly praiseworthy. All my best wishes to
them and I congratulate them heartily on their effort.
Dr.
Jaydip Biswas
Director, Chittaranjan National Cancer Institute
The
Hitaishini touch
NUPUR CHAKRABORTY
NOWADAYS the word “counseling” is very commonly
used, easily available, and everyone’s cup of tea.
With the advancement of educational qualifications, people
are having the natural tendency of giving advice without
understanding the requirements of patients.
According to the dictionary meaning, counseling is “giving
advice professionally to a person on personal problems.”
We, at Hitaishini, the only breast cancer support group
in the whole of eastern India, conceive and follow it thoroughly,
but with a little different outlook. Counseling is the key
element of our main activities. A counselor on cancer should
have those special qualities which could change the entire
perception of the patient as well as his or her family members
about cancer. Instead of counting the days, they start thinking
to live life to the fullest and in a meaningful way.
We have cancer survivors, social workers in our oganization
as members. We fight against this dreaded disease together,
in a disciplined and organized way. We train our members
to be a counselor. But before that, we believe a counselor
should have empathy (ability to identify with a person)
to engage in this work.
The first visit of a cancer patient to Hitaishini always
starts with a depressed note on the part of the patient,
who comes after losing faith in life and with mistrust in
everything. It becomes our paramount duty and responsibility
to rescue them from such a situation. With our cordial welcome
and smiling reception, we try to instill in her the message
that “we care for you.” After a little interaction,
she starts expressing her suppressed feelings of fear of
an unknown future, grief about losing her maiden beauty,
and anger about her changed financial condition. She shares
her traumatic experiences in due course of time.
In this process, the counselor is also able to build up
the patient’s trust. Listening attentively and patiently
is the major part of proper counseling. If we, the counselors,
are not calm and relaxed, how could we offer emotional support
to anybody who is going through a bad phase of life? When
the patient is convinced that this is the only place where
confidentiality will be maintained, only then does she start
ventilating her bad or negative feelings to the counselor.
Thus the healing process begins. Gradually, she starts to
assess and accept the reality of her present condition.
In order to make the process easy and approachable, it is
essential that the counselor should be flexible and free
from prejudice. In such cases, it becomes easy for the patient
to seek some advice in formulating appropriate action plans
for the future. But the counselor should also remember that
he/she does not teach or advise direct action. The goal
should be to try and develop a patient’s self-esteem
and self-reliance, thus bring her back to normal life. By
being non-judgmental, knowledgeable, and competent, the
counselor helps the patient face the new challenges of life
and develop skills to cope with the dreaded disease. Counseling
gradually tapers off as the situation improves and after
sometime may even terminate. But sometimes some patients
may require follow-up monitoring.
A few years back, when I started working in this field,
I thought counseling was required only for those who have
sensitive minds to think deeply about the consequences.
But gradually I realized that a poor woman has the same
mind too, though suppressed by the dire financial situation
of her daily livelihood. My warm touch helps her to cry,
to express her anxiety for her husband, children. She also
wants to be back to her daily hectic life, where managing
even one mean for everybody is next to impossible. She also
hesitates to ask for monetary help. When we fit the prosthesis
(artificial breast) on her affected breast, the smile on
her face is noticeable.
Therefore, rich or poor, everyone needs counseling. Maybe
the language will be different, the approach will be different,
but the feeling will be the same. I feel proud that Hitaishini
has been able to establish its position in the field of
breast cancer support work, which starts with “counseling”
and ends with “living for life.”
Romola’s story
Thrice operated for cancer, she tries
to continue with her usual lifestyle.
NUPUR SEN
I HAVE always been fascinated by anything old. And if it’s
an old house – there we go! My mind goes back –
and further back. I begin to think, who built this house?
How did he feel about it? Did he imagine the future of this
house? How did the family in the past spend its time here?
If I further allow myself, I can almost see a woman from
the past standing at a window.
So, when I stood in the front courtyard of the old house
in Central Kolkata, I had the same kind of thoughts and
feelings. I climbed the stairs. Romola was waiting for me.
A middle-aged woman like me, Romola has been thrice operated
for cancer. Her hair hasn’t fully grown back yet after
the last one. So, it was recent. Yet, when she heard I had
a back problem, she was concerned. “Would you like
another cushion? Do you need a stool? Would you prefer that
other chair?” I began to wonder, who is actually the
patient?
Six years ago, when Romola went to the doctor one afternoon,
he confirmed her fear. When there’s no longer any
scope of thinking – I may be wrong, when reality hits
hard – the going can be undescribable. I’m not
going to try it. It’s a very personal feeling for
the person concerned. But when Romola said her husband Gautam
did not ring the whole day to enquire, I wondered why. Workaholism?
Detachment? Attitude problem? Or, again an undescribable
fear? That was it. When he heard the news, Gautam said he
couldn’t dial his home number for fear of this. The
fear numbed him. A relationship of thirty-four years. Companionship
through many ups and downs. So much still to look forward
to.
Romola has two children. A son who is working, a daughter
who is currently doing her thesis. Six years ago on that
day, they alternatively cried and gave her hope –
Ma, you go through the operation; everything will be OK.
Romola said to me: “If I am strong, they are strong.
If I break down, they do so as well.” I thought, is
she like an umbrella to them? But an umbrella can sway when
the storm is tumultuous. Romola’s first concern was,
“What’s going to happen to my children and husband?”
At times she wondered, how will the others take the news?
Will they respond, or react?
Gautam rang his elder brother, Pradeep. Pradeep’s
response was, let’s get into action. That helped Gautam’s
numb feelings. Pradeep said, “Let’s find out
a suitable surgeon.” His insurance file was kept in
Romola’s wardrobe. On the even before the operation,
Romola asked him to take it back. Pradeep said, “What’s
the point? I’ll give it back to you anyway after you
return.” I felt hope need not always be overt.
Gautam’s sister Bula lives in the USA. Her husband
Tapan rang up: “Block the biopsy and send it to me.
I’ll have it checked by a pathologist here.”
He later sent a wig and a prosthesis. He need not have.
We get good ones here. That was their way of saying “We
are there for you; we care.”
Care. It’s a state of the mind. And mind is a very
strange thing no doubt. Strange yet natural. Very contradictory
indeed. You’d never know in which direction it is
liable to run. People living thousands of miles away may
try to make you feel better. And sometimes we wonder at
those whom we meet frequently – why did she say this?
This becomes evident in periods of crisis.
Let’s see what Romola experienced.
She tries to continue with her usual lifestyle. So she socializes,
keeps in touch with her extended family. She’s always
enjoyed doing this anyway. But there were some who began
to remark – “So, you’re moving around!”
Romola wondered. Is she not supposed to move around? Or,
“How come you’re up and about?” Romola
thought, should I not be up and about? Did I make a mistake
in coming here? Small remarks, apparently insignificant,
but the body language tells it all. It’s as if Romola
does not have the right to feel well, lead a normal life.
After he first series of chemotherapy, when Romola had lost
her hair, she steeled herself and joined a family get-together.
Some were openly surprised. “So, you’ve already
lost all your hair!” Romola didn’t want to think
of it. But she was made to. Were they actually surprised?
Losing hair temporarily after chemo is a well-known fact.
We all know about it. They also seemed to like it that Romola
had lost her hair. I thought, there must be a reason to
this.
Romola’s daughter, Rimli, joined us. As her mother
talked she listened. There was no obvious expression of
emotion. But her eyes said the roles at that moment were
reversed. The daughter was being the mother. Romola said,
“We’re a very close-knit family. My father-in-law
used to say, spend as much time as possible with your kids.
My children pay respects at their grandfather’s photo
every morning.”
I thought: Good God! It’s happening at this age when
even nuclear families have begun to break up! When Romola
remembered her father-in-law, she had a far-away look, as
if she was remembering her own father.
Romola is essentially a family-minded person. Her involvement
is also spread out to the extended family. The youngsters
share their thoughts with her. The elders feel happy when
she visits them. Perhaps they understand her genuineness.
Over the years, the relatives by marriage have become her
own people.
But why should everybody like it? That’s not reality.
Reality is, there are family members by marriage who do
not perceive her supportive contribution towards the family
at large. They are only able to perceive her popularity,
which does not make them happy. They think it’s not
fair. So, when the opportunity came, they made use of it
– and there were the unfortunate remarks. Romola has
now learnt to be more objective.
She shares a sensitive relationship with her doctor. He
doesn’t talk much. But every time she visits him,
he gives the feeling that things are OK with her. She leaves
the chamber feeling better.
Interestingly, she gets a different kind of support from
Hitaishini. The members have visited her. Vijaya scolded
her for feeling down. It’s a non nonsense kind of
support. They insisted she visits the Hitaishini clinic.
Initially, Romola was very inhibited. But once there, she
saw the children with cancer and thought: “I shouldn’t
be frightened of death. I’ve lived long and had a
lot out of life.” Without knowing it, the kids helped
her to leave the clinic feeling strong.
Nothing can be totally negative. Even the death of a child
can bring a positive effect when the parents begin to help
other children or bereaved parents. There was this lady
suffering from arthritis. She remarked to Romola: “It’s
better to have cancer than this ailment.” She was
so involved with her own pain that she did not realize what
kind of impact it could have on a cancer patient. Initially,
Romola was stunned. Then she felt enriched by this experience.
I looked back at the house as I left it. Many years ago,
the ancestor who built this house, did he visualize that,
generations later when the social structure, the value system
would have vastly changed, there would be somebody here
whose children would remember their grandfather every morning?
Romola was standing at the window. I had come to visit a
patient. I met someone whose illness had enriched her. I
felt enriched, too.
A Hitaishini volunteer measuring the arm
of a lymphodema patient at one of its clinic
A survivor’s tale
I never thought, ‘Why me?’
SUKANYA MUKHERJEE
I WAS THE first to spot my gland. One day, while bathing,
I noticed that a part quite a bit below the left side of
my throat was swollen. I touched it. It felt soft. It seemed
ominous. I didn’t delay, but went to see a doctor
straightaway, and by the blessings of the Supreme Power
I was treated by one of the best hands in Kolkata.
‘Infiltrating duct carcinoma – grade III’
– when I got this histopathology report, after my
surgery, I never thought – why do I, of all people,
have this disease? Why this disease? Why do I have to undergo
this painful treatment?
My feelings were just the opposite. We all know that illness,
sickness are universal and inevitable. There is no family
in which none of the members has ever fallen sick. So I
started to feel fortunate to have had this disease myself,
of all the people in my family. Because, my experience has
made me feel that getting sick oneself is a lot more preferable
to seeing one’s near and dear ones sick.
From my past experience, I have seen that the word ‘Cancer’
is not just a name of one of the numerous diseases people
have. The name itself spreads a sense of horror in our minds.
Not only the worries of falling sick, the inconveniences,
the sufferings, the discomfort, the financial exploitation,
but also the absolute fear of loss, fear of the uncertain,
fear of death are intertwined with the name. And that’s
the reason why we try to avoid it, to bypass it, to stay
away from it. But reality does not allow us to do so.
I looked upon my disease as a journey for me – a long
journey across unknown roads, unfamiliar paths, untraversed
ways. A journey with numerous ups and downs. All along I’ve
learnt so much. The hardships have increased my power of
endurance and willpower. I’ve got the opportunity
to come in contact with so many people. I’ve got a
glimpse of entirely different aspects of life. My outlook
has widened, my soul has been freed of narrowness, meanness.
My power of tackling unpleasant reality has been enhanced.
Sometimes the trauma of chemotherapy and radiotherapy, specially
chemo, becomes a barrier to the treatment. But being a survivor,
I must say one has to accept it just as a part of the treatment,
nothing else. I know, not only the physical discomfort,
but also the prospect of hair loss is very unnerving. But
chemo is absolutely necessary for the treatment of breast
cancer for most of the cases. Here again I would like to
remind people of the role of relatives and friends. They
should try their best to make the patient feel at ease.
I tried to accept the reality, and to control my emotions
and to stay as cheerful as possible. When the disease is
diagnosed, the most important thing is to accept it. Not
only the patient, but also the friends and relatives of
the patients should accept it in the right spirit.
I have seen the denial - denial by my relatives and my friends.
In the initial stage, most of them believed and also tried
to convince me that it was not that serious Thank God I
never felt that way.
I am really lucky that I could accept it with a positive
attitude and I got myself treated in proper time with proper
care.
Bringing back the smiles
SONALI DASGUPTA
A LITTLE more than five years have elapsed since I joined
Hitaishini as amember volunteer. At the time I had joined
this organisation I was under the impression that my activities
would be restricted to arranging medicinal help for the
breast cancer patients living below the poverty line. Little
did I know that in the course of working in the facilitation
clinics run by our organisation I would come to share the
sorrows and joys of the patients visiting them. Such sharing,
as I have realised, is often more effective than the medicines
they can buy from a chemist’s shop. In fact, it can
make their life a little better. Here is a small example.
One day when I was working in the facilitation clinic at
the Cancer Centre Welfare Home & Research Institute,
Thakurpukur, an extremely good-looking young girl entered
the room. Her beautiful face, however bore a pensive look.
It appeared she was nursing a mental anguish. She said she
was from Bangladesh and was undergoing treatment at the
Cancer Centre. She came to know of us from other patients
receiving treatment at the same centre. When after counselling
she was about to leave, I gave her a smile and asked her
to contact me in case she ever needed any help. She returned
a faint smile. Her eyes were already filled with tears.
It appeared she wanted to tell me something. I wiped her
tears and requested her to unburden herself.
The young girl from Bangladesh told me she was married to
an educated and handsome young man. They had a bonny child.
Life seemed to be full of bliss for her until one day she
was detected with breast cancer. After the detection her
husband started ill-treating her and totally avoided her
company as he was afraid his wife could transmit the deadly
disease to him and other members of the family. Her husband’s
attitude instilled a sense of grave uncertainty in her mind.
She was feeling miserable. I talked to her for a length
of time and assured her of all possible help from my side.
I told her I am a survivor myself. After the interview she
felt I was one she could rely on. Thereafter she started
coming to meet me every Friday with unfailing regularity.
Then one day I advised her to bring her husband and child
to our clinic next time they came to see her.
A few days thereafter the young girl came to our clinic
with her husband and the toddler. I told the young man everything
I knew about his wife’s disease. I told him it was
medically proven that cancer is not a contagious disease
and a cancer patient should not be treated as a pariah.
He heaved a sigh of relief and his face lighted up. He placed
his hand on her shoulder and assured me that henceforth
he would take all possible care of his wife. The young girl
embraced me nd burst into tears.
After about five months I found the young girl sitting in
our clinic. She was waiting to see me. She was smiling from
ear to ear. She told me she was much better now, both physically
and mentally. At the time of departure she said: “May
Allah bless you.” I am happy that Hitaishini has been
able to give something to the society. It has been helping
to bring smiles back to the faces of women in distress.
Long live Hitaishini!
National Cancer Awareness Day
DIPTI ROY
PINK balloons soared away and spread across the sky over
Kolkata in a symbolic celebration of life, as volunteers
and friends of Hitaishini gathered on the grounds of Madhusudan
Mancha, a popular South Kolkata auditorium, at the end of
a walk to mark the National Cancer Awareness Day on Wednesday,
7 November 2007. The large gathering, which included many
survivors, broke into cheers to express their feeling of
hope.
Cancer support groups in and around Kolkata, cadets from
the National Cadet Corps, Rotarians, Inner Wheel Clubs,
and eminent personalities from different walks of life joined
the mile-long walk along South Kolkata’s busy Gariahat
Road during the morning rush hour. It was flagged off by
Chiranjeet, the popular movie actor, who called for greater
public support for Hitaishini’s work among breast
cancer patients.
At Madhusudan Mancha, candles were lit by members, friends,
and well-wishers of Hitaishini in memory of breast cancer
patients who are no longer in our midst and to pray for
the recovery of those who are fighting the disease with
courage. Taj Halim, wife of the Hon’ble Speaker of
the West Bengal State Legislative Assembly, lit the first
candle. Among others who joined us to light candles was
prominent theatre personality Shaonli Mitra.
Hitaishini volunteers celebrating
the National Cancer Awareness Day.
