Recently I saw a Malayalam movie
titled ‘Njandukalude Nattil Oridavela’ (An intermission in the land of crabs)
directed by Althaf Salim. The story is about
Sheela Chacko, a college professor who was diagnosed with early-stage
Breast Cancer (BC) and the challenges she faced. It was not the diagnosis or
the chemo that was shocking and painful for her, but the response and reaction
of her dear ones. Their fear, anxiety, sympathy, and grief were more tormenting
than her own fear of the disease. In fact, she had to shout at them to come out
of their gloominess.
Seb is my close friend from my
school days. We used to spend all our holidays in each other’s homes. One of
those days of fun, games and laughter, I heard that shocking news from Seb’s
mum who reached home after a check-up. That was the first time I came to know
about BC. Seb and his sister were literally shattered as their Dad was already
under treatment for chronic alcoholism. But Seb’s mother was brave! As a woman
who had successfully faced much difficult things in life, she was confident to
fight the disease. She did it. It’s been three decades after the diagnosis and
she leads a very healthy life.
Across the globe, October is
earmarked as the Breast Cancer Awareness Month. Breast cancer is the most
common cancer affecting women. As per the estimate of International Agency for
Research on Cancer (IARC) and World Health Organization (WHO) (2016) there are
more than 1.7 million new cases of breast cancer occurred among women worldwide
in the recent years. Since the causes of breast cancer are still not clear,
early detection of the disease is the key to successful treatment. In this
post, let us learn the lessons for life, for all of us, from the perspective of
survivors. The aim of this article is not only to create awareness about the
life after the diagnosis of BC, but also to understand how people achieved
success in such extremely adverse circumstances in life.
Farida, my friend whose
tag line is ‘Woman who refuses to be indoctrinated by society’, is a brave
woman. More than 22 years ago, after examining her, the doctor was searching
her close relatives to share something serious. Farida realized that something
was wrong. Doctor told Farida: “You have breast cancer”. Farida didn’t know what
to respond! The doctor continued after a short pause and told gently with a
feeble voice, “It is stage III”. Farida, has seen the worst in her life. Just
three years before, her dad was diagnosed with Hodgkin’s Lymphoma. Couple of
years later, her sister was affected by breast cancer. And within a year, her 11
months old daughter was diagnosed with special needs due to atrophy in her
brain. And now, the doctor tells her that the crab is after her! No point in
getting depressed or disillusioned. She needs to live for her family. She needs
to take care of her special child whom she was breastfeeding.
Farida knew she had to put up a
bold fight. She asked the Doctor: “Tell me Doctor, what should I do to survive?"
Doctor was extremely happy to see the strong survival instinct in Farida. He knew
that such a desire is the most important step to successfully come out of
the disease.
For Farida, the journey through
the onslaughts of the disease provided rich and unprecedented learning
experience. She divided life into “B.C.” and “A.D.”- that is Before Cancer and
After Diagnosis. She said: “Before cancer I lived an aimless life with no focus
or goals. I was struggling to please everyone and not being successful. I
realized the value of my life only when I was about to lose it. That is when I
started living a more focused and goal oriented life. I set targets to be
achieved, the most important being bringing up my children lovingly. My son was
a scared and insecure 4 year old and my special needs daughter was just 11
months breast feeding baby. There was no way I was going to die leaving them
behind. I geared up for the fight and focused on my goals and target. I often
forget the tough challenges I have faced, the suffering I have been through,
the hurdles I have overcome or being a cancer survivor.”
Today, after more than 22 years
of diagnosis of BC, she stands at the stage in her life where she has almost
achieved most of the targets and goals she set for herself. Her two children
have turned into beautiful and kind people who she can be very proud of. Her
special needs daughter has become an earning member of the family. From a PUC
dropout, she became a Masters degree holder in counseling and psychotherapy.
She got her driving license, found her dream job, learned to swim and travelled
abroad frequently to take care of her sisters. Farida is a popular blogger with more than 2.5 million viewers. She
has started an integrated Montessori Method based school that would meet the
requirement of modern times and also the ‘Nurture Day Care’ for kids of 4
months onwards (from 7.30 am to 7.30 pm) in Bangalore.
What a great testimony of gaining
success in the most adverse circumstances! Undoubtedly, Farida’s life is an
inspiration for all of us.
What would be the ideal response
to a patient diagnosed with BC?
What would be the journey of a BC
patient?
What factors can make a patient
fight the disease successfully?
Whether life changes for the good
or bad after an episode of BC?
Let us get answers to all these
question from my friend Sharada who has bravely fought breast cancer and has much
valuable lessons to tell us not only about BC but about life, its challenges
and how to face them courageously.
Sharada happened to witness the
death of a few persons within her husband’s family due to cancer. And,
naturally, the word ‘cancer’ was meant to her, the end of life. She thought
that like all those who were taken away, she would also not be able to share the
tale of her victory. How was her journey? How did she face the difficult times?
Read below my conversation with Sharada
What you used to feel earlier
whenever you happened to hear someone got BC?
I always had a feeling of
sympathy, pity, sadness, fear and sometimes indignation too when I heard of BC
cases. Indignation since I used to feel
why should a woman get breast cancer when she has nursed her child, had no bad
habits and led a healthy life. That was
because the cause of cancer is not known and we normally tend to relate it to
such things. The word Cancer itself used
to create a feeling of melancholy as if it was the end of life - may be since some of my close relatives
fought cancer of different kinds but did not survive. I must say I am the first one to fight it out
in my family and emerge victorious to tell the tale.
What was your immediate response
when your doctor or the diagnostic center hinted you that they suspect BC?
Obviously I didn’t want to
believe. I fervently prayed that what
they were saying wasn’t true. But
reality was I knew something was amiss because in my case, I discovered
something unusual and went for a check-up.
So, in a way I was mentally prepared to face the disease. Though the first doctor did a
physical examination and suspected that it was BC, she did not confirm and did
not ask for a clinical diagnosis. In
fact, I took three tests and opinions, all of which confirmed that I had Stage
1A BC.
I did feel sad. Depressed.
Apprehensive. Afraid. I knew I had lot of responsibilities in my life to
discharge. I felt some mission that God
had created me for, is not yet complete.
Therefore, I knew that He will keep me alive and see me through the
ordeal. I had the faith in Him.
To whom in your family and
outside you shared this first?
To my husband who accompanied me
to all the tests and stood by me as a rock throughout my treatment. Then it was my sons. The first person outside my family to whom I
broke the BC news was TM Dr. Ushy Mohandas who is a doctor by profession. She is also a healer, meditation expert and
motivational speaker. I thought seeking her opinion about line of treatment
would help. Needless to say she gave me
lot of hope and courage. She just said
treat each chemo session as a milestone completed. After the treatment, look back and feel happy
that it is over. Look ahead and feel happy that only a few more are left. I had 3 chemos, surgery, again 3 chemos and
finally 33 days of radiation. In between
there was another surgery for inserting the chemoport. Thanks to Ushy’s reassuring words, I really
felt the whole treatment was like a project where I could successfully complete
each milestone. Words can do
wonders. Filled me with lot of positivity
and faith in myself.
How were the days after BC was
confirmed – the conversations with yourself??
Initially I did have the ‘why
now’, ‘why me’ questions like every other patient has. However, thanks to the positive atmosphere at
home and my own determination to overcome the situation come what may, I did
not regret nor bemoan my condition.
Actually I didn’t think too much since I kept myself occupied throughout
my journey. I created a schedule –
walking, yoga, pranayama, reading lot of books (fiction that I hadn’t found
time to read for a long time), music, meditation and office work (reduced
though). I ate well, thanks to my
husband’s delicious cooking served with care and affection. I slept well too
except of course the 5 days after chemo which was very painful and tiring…so
energy-sapping that at times even lifting an eyelid would seem like moving a
mountain. Getting out of the bed and
walking to the bathroom would seem as though I was walking a marathon. But after the initial wearing out of the
chemotherapy’s side-effects, I would become normal and platelets would go up,
readying me for the next round. Taught me that nothing is constant – pain,
happiness or both. Life is transient.
What was your perception of how
your spouse, children, in-laws, relatives, and friends felt about you and the
disease?
I am lucky to have a very
progressive and broad-minded family.
Husband and children never treated me like a patient. In the sense they took good care of me but
never sympathized or isolated me.
Conversations were not on cancer or on my treatment. It was on work,
food, music, books etc. When I shared
with my relatives and a few friends that I have been diagnosed with BC, my
sister-in-law forwarded a ‘to-do-not-to-do’ list received from her friend who
had recently undergone treatment. Lot of things on food, what to eat, what not
to, how to prepare, what side-effects to expect, exercises etc. Balajee, a
fellow toastmaster, sent me a nice ‘instruction-kit’ kind of email to face the
challenging treatment. One of the
important things was to stay positive and not to have too many relatives and
friends visit you during the chemo treatment.
Immunity being low, chances of catching some infection would be
high. Added to that some of them would
start sympathizing and feeling sorry for me which could bring my morale
down. Words as I said are very
powerful. Negative words impact more
than positive statements and it is easy during low life-conditions to start
losing hope. That would have finished me
even before I could have started the treatment.
I followed this advice and firmly told friends and relatives to avoid
visits. This is the tip I give other
patients and care-givers too. There is
no question of someone feeling bad on being told not to come. It is a question of what best environment to
give the patient. It is not medicines
alone that cure a disease, especially the one like cancer that require a
comprehensive strategy in place. It is
the food, living conditions, patient’s mental condition, family support, access
to right kind of doctors and most importantly the will to live that matters.
Can you share a little about the
treatment experience?
For early stage cancer there is
time to prepare the patient and choose the line of treatment. In fact, taking 2-3 opinions, choosing right
set of doctors and sticking to their advice is of paramount importance. Many
a time, the wrong line of treatment, inexperienced doctors and the
negative mental condition of the patient proves fatal. As I said I faced each stage of treatment as
if I am on a long term project to complete it step by step. There are a few
depressing moments too. One such occasion was when I developed a skin infection
on my hands where the skin started peeling off and oozing. This delayed my treatment by a few
weeks. Some of the chemo doses were very
strong, sapping me of my energy completely.
I felt I could never, ever get up and lead a normal life.
What about hair loss? How did you
face that stage?
Hair is the crowning glory for
every woman. Unfortunately this is the
first visible victim of the chemotherapy treatment. Exactly 15th day after my
chemo first dose, I started losing hair.
I had trimmed my hair before the whole journey started so that the pain
of losing would be less but when I started getting tufts of hair into my hands
and onto the pillows. Though I knew this would happen I couldn’t take it when
it actually happened. I wept. Such is life!
Life also teaches one to move on, adapt and face it. After a few weeks I was almost bald but I had
to carry on with my consulting assignments, attend board meetings, meet clients
etc.
Srividya, a good friend of mine came home and spent time with me teaching how I can drape the dupatta fashionably around my head and face the world without feeling embarrassed. She bought me a few scarves. My friend Premjeet bought me colourful cotton skull caps that were soft on the head. Hair fall was very painful physically too. Like headache, there was hair-ache, if I may call it so. The root of the hair would begin to pain and then tufts would fall off, as if a tree was getting uprooted. I had never experienced this kind of pain before. So, the cotton caps and dupattas helped.
Srividya, a good friend of mine came home and spent time with me teaching how I can drape the dupatta fashionably around my head and face the world without feeling embarrassed. She bought me a few scarves. My friend Premjeet bought me colourful cotton skull caps that were soft on the head. Hair fall was very painful physically too. Like headache, there was hair-ache, if I may call it so. The root of the hair would begin to pain and then tufts would fall off, as if a tree was getting uprooted. I had never experienced this kind of pain before. So, the cotton caps and dupattas helped.
You didn’t try wearing a wig?
I had said no to wearing a wig though many
suggested me to. It would bring its own
set of adjustment problems, wig-sores, infections, pain etc. I felt I looked good as I was. I didn’t want to hide anything. Be open with my condition was my mantra. When I went nearly bald, my husband
complimented me that I looked like Persis Khambatta, the famed 1960s model with
a tonsured head. My elder son suggested
that I try Ghajini style while my younger one tapped his fingers on my bald
pate and said “Boss, Sivaji the Boss”.
And there are a few advantages of hairless head! I didn’t have to bother about washing my hair, combing, styling, colouring, maintaining etc. I could just step out with a dupatta or none! I actually felt light-headed (No head-weight whatsoever!). But then it also made me realize how we take things for granted. We know its value only when we lose something. In case of hair, it grows back. But with some other losses, it can never be recovered or recouped – say people, relationships, integrity etc. Learn to value what we have and nurture it, respect it.
What about the cost of treatment?
Cancer is an expensive disease and takes a toll on the financial health
of the family. Insurance cover is more
often than not, not adequate for the entire treatment which can last upto an
year – at least in my case it took only that much time. However, for advanced stages it can stretch
beyond and literally snap the patient and family. I was lucky to have very supportive
sister-in-law and her husband who introduced me to reliable and experienced set
of government doctors who also ensured access to affordable, good quality
medicines.
I wish all streams of knowledge -
Allopathy, Ayurveda, Homoeopathy, Yoga etc – are appropriately integrated and then
prescribe a holistic and yet customized line of treatment to patients. Collaborative approach is beneficial as long
as each form of medicine acknowledges that some things are good in the other
form. For side effects treatment and
post-treatment maintenance, I found Ayurveda to be good. Even allopathy doctors prescribe pranayama,
yoga and meditation but they don’t believe in the power of Ayurveda and
homoeopathy to help us combat the ill-effects of chemo and radiation which is
very pronounced on our liver and hormone system. These forms of medicines work on the
individual level and address specific problems and must be co-opted by the
mainframe allopathic doctors. I have done
this during the treatment and now also and hence the suggestion.
Corporate hospitals are expensive
but government ones are unable to handle the flow of patients. There are good doctors in government run
hospitals but facilities are pathetic.
It is sad to see the vast number of rural patients coming in but not
getting required timely attention. In some private hospitals there is
unnecessary screenings, surgery and hormone treatment out of fear and
over-cautiousness. Many a time a woman
just has a lump or cyst but I find pharma companies and doctors creating a fear
and operating on her or putting her on a long hormonal treatment that has many
ill-effects on her body for rest of her life.
Some hospitals are making money out of the advertisements and creating
panic among women. Women need to be wary
of these too and not fall prey for these package check-ups, many of them
unwanted. Sometimes I feel we are going
overboard.
You were a busy Company Secretary
and corporate consultant. How did the disease and treatment affect your
professional work? How did you spend your time at home?
I had an open communication with
my clients. Wrote to each of them about my
condition in advance and assured them that my team will take care of the work,
which they did remarkably. At meetings
also since I was open about my condition, people were not critical or
sympathetic. I never gave a chance for
anyone to give me a sympathetic (‘ayyo..poor lady’) look. I maintained a confident stance always and
spoke positively, never letting others’ concerns, doubts or misgivings get into
me.
For the first time in my life, I
had lot of time on hand. No kitchen work
and limited office work. I had time for
myself. Kept a diary of the events,
though not daily. Listened to music and
watched movies. Read some books on
self-healing. I bought a few light
fiction books that buoyed my spirits. I
read like I was possessed. For long, long years I hadn’t got time for
myself. Without fail I listened to Dr.
Ushy’s 7 minutes ‘Affirmation’ track that she had specially recorded for me
which helped me stay positive and believe that I would live prosperously. Even now I listen to this whenever I feel
low.
There were prayers pouring in
from everywhere. I got introduced to a
Buddhist faith called Soka Gakkai that had its members praying for me
during my treatment. I also took up
chanting during that time and am now a firm believer of this faith that
promotes human revolution and world-wide peace and happiness.
What dreams, goals, plans or
aspirations you had a relook after the BC episode?
Having got a second life, I
became bolder. Bold to take on
life. Bold to take new decisions.
Venture into new areas of consulting.
This is because my team managed the consulting practice quite well when
I couldn’t be around all the time. I
trusted and delegated. It worked. I have been able to step out of the office
more often now, take vacations, take new assignments, grow my team, increase my
business. However, I have learnt to keep
a watch on my diet, exercise, regular checkups and adequate sleep. I had ignored this earlier. It is a better balanced life that I have
now. Thanks to my ayurvedic doctor I am
rejuvenated now and am more conscious of my body and self. I would like to write on my experience in
detail for the benefit of others apart from giving talks to inspire and uplift
others. Most importantly my goal is to enjoy the years left, travel, write,
learn film making, watch movies, plays, read and do what I want to. Life is short. Live every moment.
I joined the Pink Hope Support
group that supports patients and caregivers but am still to find time to
participate actively in their programmes.
I am determined to help other similar patients through counseling and
finances, wherever possible. The first
thing I did after my treatment was to contribute a good sum to HDFC’s Cancer
Fund.
You were elected as the Chairman
of the Bangalore chapter of Institute of Company Secretaries of India (ICSI). That
too amidst your treatment! Was it a great come back and true recognition from
the organization?
I was made the first woman
chairman of ICSI Bangalore in 40 years of its existence. My one year tenure
started when I had just begun my radiation.
It was a hectic time travelling 50 kms up-down to get the radiation for
33 days and then rush back to manage my office work and organize several
conferences and programmes. 2014 was the
year when the new Companies Act, 2013 was introduced in India. I had to come up with several innovative and
interesting seminars and workshops for our members and students. I am happy that I could do all of this with
the support of my family and committee members.
I brought in new-model of Capacity Building Programmes that could help
members start new lines of practice in taxes, FEMA etc. I also involved my friends in the IIMB
Orators Club in launching a Capacity Building Programme in Communication &
Leadership for our CS members and students that was well received both at the
club as well as at ICSI. 2014 was also
the year when our new ICSI building was inaugurated which was a big event that
I organized and compered. When I look
back, I feel immensely satisfied with my contribution to ICSI, though it was
tiring and hectic at times. Again all
this goes to prove that determination and enthusiasm can do wonders. I am now
all set to compere any public event with confidence.
Twenty key lessons Sharada
learned and would like to tell everyone
Stay positive
Regardless of your blood group, B+ve. It helps a lot to keep a positive outlook and
hope for better days.
Milestone approach
When the journey (number of
treatments) is long, it is better to traverse by breaking it up into
milestones. Each time you complete a
treatment, you feel you are nearer the destination. Confidence is reinforced.
One at a time
‘Live for the moment’ seems so
true when the treatment is arduous and side-effects unpredictable. Tell yourself ‘this too shall pass’. You will feel blessed to have passed each day
successfully.
Share with all
The more you share, the more
blessings and support you get. Some of
the experiences and tips others share will be invaluable.
Accept and adapt
Extremely important to accept the
health condition and adapt the daily routine accordingly. Not easy because lots of things that are
taken for granted suddenly seem very special, some things dear to you are lost,
many sudden changes shake you up.
Believe in yourself and your own power
The indomitable spirit is hidden somewhere
deep within. It is time to unleash it
and use it for yourself. Cancer is on
the ‘body’ and not on the ‘mind’. So
believe in yourself, your own spirit to live and your power to beat the
odds. Mind wins over body.
Positive energy from within and the universe
You will be surprised at the
energy you already possess and haven’t used so far. A crisis brings it out and strengthens
you.
Strategise right in the beginning
The word ‘C’ seems more fearsome
than it actually is. Partly because of
how fast it can spread and partly because of the devastating side-effects of
the treatment. Risks are high depending
on the stage. Therefore, it is better to
take couple of medical opinions and strategise the line of treatment right in
the beginning.
Choose the right set of doctors
The illness is special in many
ways and requires a team of specialists at different phases of treatment. Choosing a well-knit team of doctors is
extremely critical.
Believe in them and strictly follow
Once you choose who the ’Gods’ to
treat you are, stick to them and follow their advice strictly. Advisable to involve your general physician
who will keep your general health parameters under check and ensure a body that
is fit to fight the ill-effects of chemotherapy.
Adopt holistic approach
A holistic approach of
meditation, yoga, breathing exercises, chanting, prayers, music, books,
alternative medicines and above all a clear, cheerful and positive frame of
mind is required. 30% of this will help
the other 70% of allopathic treatment to work effectively.
Stay calm and relaxed
No regrets. No ‘why me’, ‘why now’ questions. Brooding or worrying doesn’t heal. The key to
a successful cancer treatment lies as much with the patient as with the
doctors. A calm, relaxed and positive mind helps in combating the
‘villain’ – the chemotherapy which is
actually the villain in the garb of a hero out there, killing all the good and
bad cells coming its way!
Be prepared for ‘side-kicks’
Journey is long. Despite strategizing, choosing good doctors,
medication, taking care of yourself – you will encounter surprises along the
way. Some infections, allergy, fever,
cold, cough etc. enter the story like side-kicks. Beware of them. Be prepared to show them their place.
Trust and delegate
To ensure that office work goes
on smoothly, trust and delegate completely.
Make sure to keep in touch and review.
Take both employees and clients into confidence. Same on the home front
too. You are not as important as you
think. Life goes on, perhaps even better
without you!
Learn to manage situations
Side-kicks, some complications,
surprise situations on the work and home front, your own moods and thoughts,
finances etc. throw up unexpected complexities.
Learn to manage situations rather than worry.
Go slow on internet
Don’t visit ‘Internet Bhagwan’
too often. What happens to others may
not happen to you. It is good to be
informed but don’t dig too much.
Ignorance is bliss at times.
Avoid certain kinds of people
Avoid too many guests, people
with negative vibes and unwanted sympathy. Be candid and firm. Obviously you don’t want to lose the
positive energy you have so painstakingly built all through. You don’t need sympathy, you need moral
support and confidence.
Good wishes and prayers really heal
The measure of a person is the
number of people who reach out to him / her in times of crisis, whether asked
or unasked. The goodwill earned over the
years starts paying. Good wishes and
prayers work wonders. Include plenty of
them in your diet together with the juices, fruits and nutritious food.
Lead normal life, but don’t stretch
Stay as active as possible and
don’t think about the illness. Be normal
as far as the ‘villain’ permits and encourage family members to treat you as a
normal person. Physical activity is a
must but don’t punish yourself. The
break you got after a long time in life is to be enjoyed. Relax and rejuvenate.
People are the greatest assets
Friends and family matter the
most. You will experience this often quoted phrase the most during a serious
illness as Cancer. You will feel
overwhelmed and blessed. But you will be
surprised that along with friends and family, work also is a welcome
feature. It breaks the treatment routine
and keeps you energized.
The lessons taught to us by Farida
and Sharada are not just on how to cope with Breast Cancer, but on how to face
the challenges and adversities in life with courage, confidence and hope.
Let me conclude this article by quoting Douglas
Malloch.
“The tree that never had to fight
For sun and sky and air and
light,
But stood out in the open plain
And always got its share of rain,
Never became a forest king
But lived and died a scrubby
thing.
The man who never had to toil
To gain and farm his patch of
soil,
Who never had to win his share
Of sun and sky and light and air,
Never became a manly man
But lived and died as he began.
Good timber does not grow with ease:
The stronger wind, the stronger trees;
The further sky, the greater length;
The more the storm, the more the strength.”
© Sibichen K Mathew Views are personal
Read below some more stories of extraordinary persons. Comments welcome.
sibi5555 (gmail)
More in sibichen.in
