In the pink to inspire: Unique lessons of life from the Breast Cancer survivors

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.

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.”

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© Sibichen K Mathew                                     Views are personal 

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