Mr NP Mathur's (Colon Cancer Survivor) story as told to Ritu Sharma –

Introduction

I call him for an appointment and hear his enthusiastic voice. He says he has not yet been to Chutney Chang so that is where we could meet for lunch. I reach the restaurant a bit early and sit down to wait. I see a gentleman with thick moustache walk in briskly with no signs whatsoever of being ill, the neck support brace the only give away of an ailment. He greets me cheerfully and we settle down for an elaborate lunch and chit chat……….

Mr NP Mathur, 73 years old – Colon Cancer Survivor

He grew up in a large family of seven brothers and five sisters. He joined air force as an airman in 1960 at a very young age of 19 and worked hard to go up the ranks. Around that time his mother was diagnosed with breast cancer. Even though surgery was performed followed by cobalt radiation, she passed away in 1963. Later his three sisters were also diagnosed with breast cancer. Two of them succumbed to it. The third one was diagnosed when her son was 12 years old but she lived up to an old ripe age, a grandmother of 15 year olds and eventually died of heart attack. Having seen so many cases of cancer in his family, he considers it as any other common illness.

He lives alone as his wife passed away few years ago and his son who is doing extremely well in his job has been posted overseas.

Initial Signals

It was 2009 when the initial symptoms appeared. He was passing blood in stool and there was lot of pain. He took painkiller which did not give him much relief. It was increasingly becoming difficult to sit properly due to the pain. On his visit to the doctor, a tumor was detected. After the biopsy was performed, he was informed that he has colon cancer.

Treatment

Radiation was initially done to reduce the size of the tumor followed by surgery. Doctors advised him to get Colostomy done. His son was alarmed and was uncomfortable with the idea of a bag hanging from the body all the time. But he took it in the stride and told his son “So what? I do not mind”. This is his attitude. His caring son made sure that he got best possible treatment in a well known and prestigious hospital.

The next step was to go through chemotherapy. This did not get him worried or worked up as most people would after hearing the word “chemo”. He insisted on handling it on his own. He hired a taxi with driver on a permanent basis and went all by himself to the hospital for chemo. While in the hospital he kept his good humor alive by cracking jokes with the nurses and attendants on duty bringing a smile to everyone around him.

He took all the adversities on a war footing and found a way to combat it, so like an air force person! To make chemo more effective he was asked to take another medication. This caused severe dryness and rashes on the skin and scalp. He found a way around it by applying aloe vera on the skin and coconut oil on his hair for relief. To reduce the side effects of chemo (nausea, vomiting), he ensured that he had a good breakfast before leaving. And above all his positive attitude helped him tide over the difficult situations.

Managing the disease

To him being independent is of utmost importance as that is the best way to stay active. So, even though relatives were advising him to get help for cooking and cleaning, he decided against it. He does his own cooking, experiments with making exotic dishes, and sometimes even invites neighbors for a meal. His son is a great source of strength for him as he visits him often and is around whenever needed. He also spends time overseas with his son every few months.

For him exercising, eating a healthy meal and meeting people is the key to staying fit physically and mentally. He goes on long walks regularly and has a great rapport with all age groups in his apartment complex. If anyone around him is feeling low or depressed, he extends his helps by counseling them.

He hasn’t stopped doing some of those things which he enjoyed even in his youthful years, such as riding bikes and travelling. He says he will continue to ride his motorcycle till he has confidence. Every year he travels with his son and has a great time in the beautiful beaches of Goa.

His Thoughts

He looks at positives in everything and has no regrets. He feels that people afflicted with cancer should not tell a sob story about their illness and demoralize people around them. Instead, he would rather tell everyone how to face it. There are some people afflicted with cancer who don’t want to talk about it and there are some who do not even want to reveal or accept it. He feels that this is not the right attitude. The more someone feels afraid, the worse it could be for them.

He is very blunt when he says “Who wants to die? Do I? No! But you must reconcile to the fact. One day everyone has to go, so why think of tomorrow, enjoy your today.”

His son had called in the morning to check on him. He told his son that he was going on a date! Well, actually I thoroughly enjoyed my “date” and at the same time felt inspired by him. When I insisted on paying the bill, he did not allow me. He smiled and told me that it was his birthday and it was going to be his treat. I wished him a very happy birthday and we said our goodbyes. I hope to have another date, next year? on his birthday?…..

CTH at Seminar Arranged by Asharya

Summary of   Talk at the Seminar

CTH was invited in Seminar arranged by Ashraya. Mamata and Padma have taken all the responsibility on their own shoulders. They along with technical help from Nagesh presented CTH in the seminar, which generated lot of interest among the large group of audience. Please read more at our Blog site :

 Some members of CTH attended a seminar, hosted by Ashraya at Bangalore International Centre on Saturday the 22^nd June,2013.

The aim of the Seminar was:

To provide exposure and learning  on innovative approach to dealing with cancer and mental illness.

Need to sensitize the medical staff on the vulnerability of the patients.

To network with self help and support groups working with the cancer patients.

To understand the law on the right of cancer patients .

These were some of the issues discussed and the speakers were:

Dr. Ajay Kumar-M.D- HCG—who stressed on the financial constraints bothering  the cancer patients and the need for quality care, He also placed importance on early detection which will cut down treatment time and also cost, to long drawn procedure treating patients who are in later stages.

Dr. Nomita Chandy –Founder of Ashraya-herself a cancer warrior spoke of the aim of the seminar in exhorting doctors to treat patients as a person and not look through them while discussing the treatment modalities. She spoke about her experience as a patient, and how she felt being treated (even thought she is a doctor) as a non-thinking person and her feelings at not being consulted in the planning of the protocol. There was pain in her voice as she recounted her experience of being discounted as a functional adult.

Dr.Brinda Seetharam – Psycho Oncologist-Founder of Coper-an organization providing Psycho- oncological care, spoke on the necessity of training in this field. She supported her statement by facts and figures and also mentioned the paucity of trained personnel to help the increasing number of people affected by cancer.

Dr.Uttara Vidya Sagar – Founder of Viswas Counselling Centre and Viveka – spoke on the impact on the family of those person suffering with chronic illness. She also spoke about the need for support at primary level (CTH).

Mr.Randhawa – CEO-Karunashraya- stressed on the need for sensitive communication involving tone, body language and particularly eye contact. ( We need to keep these in mind).

Padma Mahadev & Mamatha Shetty spoke about the work of CTH and mamatha spoke about her experience as a cancer patient and her strong will poser which helped her to take charge of her treatment.

Outcome of our talk – CTH was made known to more people. Our work touched many and Dr.Brinda assured us that she’ll send us patients and we could also do the same. We emphasized that our counseling is at grass root level and definitely we will be sending people in acute distress to experts.

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.

Treatment

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.

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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.

Anil Singh : as told to Ritu Sharma

Chat with Anil Singh

By Ritu Sharma

Introduction

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.

Treatment

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.

Recovery

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.

Treatment

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.

Recovery

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