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Tuesday, March 26, 2013

Padma Mahadev : As told to Ritu Sharma

Story of a caregiver as told by Padma Mahadev to 
Ritu Sharma

I was looking forward to meeting her again. I had met her over a year ago and had taken instant liking to her. I remembered her as a dignified lady with soft features and a gentle voice. 

I go over to her house and she shows so much warmth that I immediately feel at ease. I settle down in her living room and she in her sweet voice starts narrating the story….

Padma Mahadev, Care Giver

Padma had lost her father when she was very young. Her mother, a general physician, had moved to the US and was a very well known doctor there. A great believer in holistic medicine, she had filed a FDA for ozone therapy. As the FDA approval did not come though  Dr. Alwa underwent financial constraints and thought it prudent to relocate in India. She was 70 at the time.

Initial Signals

She moved in with her son and continued as a practicing doctor in India. One day she complained of having constipation. Padma felt that being a doctor her mother would know what best to do. In a few days time she talked about having diarrhea and also fainting in the bathroom. Padma was still not alarmed because she felt that mother would manage as she had 4 nurses and 2 other doctors at her disposal. Soon, her mother had started passing blood in stool. After consulting the doctor, endoscopy was performed. The tests revealed Stage 1 colon cancer and she was advised to go through surgery which meant she would have to carry a colostomy bag (an alternative channel for the feces to leave the body). She completely refused as she felt that it would take away her dignity.


Instead, she started treating herself through alternate therapies. But Padma by this time was very worried and started applying pressure for a surgery as that was what the doctors had suggested. Eventually her mother agreed for the surgery, though immediately after undergoing it she wanted it reversed. She was so adamant about it that under pressure they operated on her within 20 days time where they should have given at least one month time for the earlier surgical wounds to heal. Immediately after surgery she went into depression. She would lie down in bed for most part and hardly eat anything and also started passing stool in bed. Doctors too were not communicative enough to clearly tell Padma that her mother’s time had come. After a struggle of one and half years, Padma’s mother passed away.

Padma’s Thoughts

Padma feels that as a caregiver she was always in constant denial of the situation. All the time she felt that her mother being a doctor would be able to handle the situation.
She regrets that she did not do enough she felt pressured due to her own confusion, taking care of the house and the responsibilities etc. Also, she took care of her mother singlehandedly instead of employing a nurse as she felt it was her duty to do so. This increased her stress further and she got more and more irritable and angry. Her brother was in constant denial of the situation and refused to even meet the mother. This made it even worse for the mother, she felt un-loved.

Now looking back Padma reflects on how best care giving can be done

-         Don’t take control, listen to the patient and ask them what they want and don’t go against their wishes

-         Their dignity has to be maintained

-         Treat the person with love and not as a duty to be fulfilled

-         Take help from others instead of wanting to do everything yourself, be there as a emotional support

-         Show love, show your connection to them, show that they are such an important part of their lives, all relatives and friends should make the patient feel wanted

-         Take care of yourself too while taking care of the patient

-         Do not isolate them

-         Listen to the doctor even if you are a doctor

-         And most importantly, one must remember:  while we cannot enhance the years of a cancer patient, we can definitely strive to enhance the quality of their life.

She invites me to her dining room and offers me hot tea. It is a pleasure meeting her husband and her beautiful daughter. They too are so warm and welcoming that we get into an easy flowing conversation. When we say our good bye and I start back home, I am thinking about the nice, warm and affectionate family I had just met.

Friday, March 15, 2013

Anil Singh : as told to Ritu Sharma

Chat with Anil Singh

By Ritu Sharma


I look around for him in the parking lot of the KGA. I don’t know how he looks like; I call him on the mobile and soon see him coming across towards me. I see a person with twinkle in his eyes and a purposeful gait. We walk into the club which is some distance away, with several stairs to climb, but he shows no signs of slowing down. I sit across from him at the table, look into his pleasant face which shows wealth of experience and knowledge, and eagerly look forward to his story……….

Anil Singh, 74 years old – Bone Cancer Survivor

Initial Signals

At the age of 57, Anil ignored the subtle signs his body was giving. He suffered from fatigue, persistent low grade temperature, prolonged cough and feeling of cold. The symptoms pointed towards thyroid but that test came clean. He continued with his hectic lifestyle with a job which required him to travel almost 125 days a year.
It was almost after 10 years, in 2005, when he was visiting Hyderabad that a friend insisted he go see a doctor as he was not looking well. Subsequently several other friends and acquaintances, who had not met him for a while, said the same. Though he did intend going to a doctor but due to his hectic travel plans it just kept getting postponed.
A few months later, he went driving to Goa.  When he was returning, rushing to make it on time for work, the car almost hit a rock.  He slammed the car brakes and managed to stop the car safely.  He and his wife were completely shaken realizing how close they had been to having a serious accident.  All seemed fine and after stretching his body to shake off niggles and aches he continued his journey. After covering the last stretch of 300 km, his back started to hurt.  An X-ray revealed three fractures and five other healed fractures in the spine.  His spine had basically collapsed. Further tests revealed multiple myeloma (bone marrow cancer).  Myeloma affects just one part of the bone structure whereas multiple myeloma affects all the bones in the body.


Anil feels that it is more difficult to handle the emotional side of denial, bargain, depression and acceptance than the disease itself.  He did not allow himself to go through all the emotional turmoil and just accepted that he had cancer.  His doctors were highly skilled and that assured him of being in good hands.  To bring his myeloma to acceptable level, he was administered steroids.  In 2007, from March to December, he was confined to bed.  These were trying times; a person who led such a hectic lifestyle was suddenly confined to bed. He had lost his independence and had to rely on others for daily routine tasks.
But he had great support from his family, specially his wife, daughter, sisters and brother-in-laws.  His peers at work were unfortunately not helpful.  Instead, they took advantage of his absence.  However, people who worked under him extended their hand in support.  After he was allowed to walk, he had to learn the art of walking again as his muscles had become too weak after such a long duration in bed.  He had to take support of a walker and was advised to use it at all times.  He was warned that any fall could cause fractures.  But after a while, with the desire to be independent, he threw away the walker and started to walk unsupported taking few steps at a time.
In 2008 March, steroids were tapered off and he underwent Chemotherapy.  As he was not allowed to go outdoors, he walked the corridors of the hospital.  In the two months of treatment, he had mentally measured how many tiles made a km and made sure he walked that much.  After this treatment, he underwent stem cell change.  Those caused so much weakness that he could not eat, drink or do any work.  Even a task like brushing teeth became impossible.  This state continued till the injected stem cells started multiplying and slowly he got his strength back.

Anil feels that for his self image and self worth, it was important to do all those things that made up his identity.  And to him it was “being mobile” that was most important.  So, he worked on his mobility, he started going to the gym, and then started driving in spite of resistance from his family.  In 2009, he went to Mansarovar with his daughter, a place he wanted to visit as a young boy but could not. In 2010, he travelled to the US with his wife.

Anil’s Thoughts

Anil feels that while going through the struggle of fighting cancer, emotional support from friends and family is the most important thing for survival.  One also has to struggle with their over protectiveness and concerns.  He feels that it is important to listen to family and friends, however, take appropriate action to regain your identity.  It is like opening the last page of a book to find out what you want in life’s story and then move backwards.  He also feels strongly that the power of brain can alter reactions to medicines and you can train yourself, your immune system to react positively.  Lastly, he says, you should have the will to live, a will to fight.

Anil insists on walking me to my car and we say our good bye.  Anil casually says “I don’t know if you will see me again” and my heart skips a beat. And I think, I do want to see him again and I do hope to meet him again soon.
Ritu Sharma can be reached at  Ritusharma@Newmorning.in

Mamata Shetty : as told to Ritu Sharma

 Chat with Mamatha Shetty  
  by Ritu Sharma
I ring the bell to her house. The door opens and I see a lady who seems to be in her early sixties. She looks lovely, dignified and in very good health.  I think, she must have looked stunning in her youthful days. She gives me a warm hug and invites me inside. She makes me feel very comfortable and we settle down into an easy free flowing conversation.

Mamatha Shetty, 73 years old – Breast Cancer Survivor
Initial Signals
At the age of 45, Mamatha, a teacher, noticed a small lump on her sternum closer to the right breast. Without telling anyone, she kept a close watch on it and started reading a lot to understand the situation. The lump was hard like stone ¾ in diameter, the skin around was puckered but there was no pain. A few days later when she took her mother for a medical checkup, she told the doctor hesitatingly about the lump. After examination, the doctor immediately referred her to an oncologist at a well known hospital.
The biopsy revealed that the tumor was malignant. There was no family history of cancer. It took her a while to start accepting the fact. Initially she was shocked; she just couldn’t eat or sleep, she was becoming a nervous wreck. It was with the help of her family and close friends that she could emerge from the shock and start thinking of the next steps. Her husband and the eldest son, a medical student, were a great support in these difficult times.
When she went to the hospital to understand the treatment, she was just not comfortable with the way the doctors came across to her. They were indifferent and had no time to spare to answer her questions. This really upset her and she was dead against getting her treatment done there. Though now when she reflects on it, she is able to understand why the doctors at that hospital behaved the way they did. They have a huge queue of patients to handle and very few doctors. They are hard pressed for time and are not able to give sufficient time to each of their patients to answer their queries.
She then decided to go to St John’s Hospital for treatment. She was advised to go through mastectomy. The surgery was extremely painful and due to removal of lymph nodes up to the underarm, she just could not raise her arm after the operation. She had to undergo physiotherapy to get back her hand movement. Initially she also found it very difficult to look down at her scarred body; it took her a while to accept the changes. Radiation followed surgery which was initially a harrowing experience, but she had to deal with fewer side effects like darkened skin and soreness.
It has been 28 years since she was diagnosed with cancer, no one can make out she was ever a cancer patient. She looks healthy and much younger than her 73 years. After her treatment, she went back to teaching and also looked after her family. When she retired from her job, she did a course in counseling with the purpose of counseling cancer patients. Now she devotes her time counseling people who have been diagnosed with cancer. She also runs a cancer support group which she formed with the help of few other cancer survivors. One of the reasons for starting support group was to give that emotional support to the patients which the doctors are unable to give due to lack of time. As a counsellor, she wants to equip the patients with courage and the conviction that the medication and the suggested treatment is going to help them.
Mamatha’s Thoughts
She says, all cancer survivors should enjoy this extra life, lead a disciplined life, eat healthy and do the daily exercise. She cooks meals herself to ensure that it is healthy (less salt, less oil, hygienic etc) and takes her daily walk and also goes swimming. She feels lucky to have the finances and acquaintances overseas as they could send her the specially designed bras and swim suits which made her feel much better about herself.
There are a few things she found very difficult to handle when the treatment was going on and even afterwards. She says that whenever people get to know that you were a cancer patient, they look at you as a specimen. Some of them ask too many questions, more out of curiosity than sympathy. Close friends sometimes sympathize too much, and become a constant reminder of something that you want to leave behind. Though all you want is to be treated normally, they keep asking you all the time “are you feeling ok”, “you are looking tired today” or “I think you should not go out..” etc etc.
What she would like to tell everyone is
-         Cancer is a disease like any other
-         It is not a killer disease, if detected early
-         Do not think of it as a curse (some people try to hide it from others because they feel it is as a result of their “karma”)
-         If you feel any change in your body, immediately go to the right doctor (not homeopathy, or other forms of medicine)
-         Get a clear and right picture of what is going on
-         To the doctors, she would like to say that do not give any false hope
-         Once all your questions are answered, have full faith in the doctor
-         Go according to doctor’s advice and complete the full treatment
-         Change your lifestyle after treatment (healthy, positive thinking)
-         Love life, enjoy this extra life

She offers me a delicious mango shake prepared by her. Then we say our good bye and she gives me another warm hug before I take leave. And my thoughts are, this is what human struggle, survival and celebration of life is all about.
Ritu Sharma can be reached at ritusharma@newmorning.in