Good Friday ( 02.04.2010 ), rather a day of Satisfaction…!!!

 

It was a holiday for all of us due to Good Friday. First priority on such holidays for us now is to venture out for visiting patients under Palliative Care program.

Madhu guessed the fair of cycle rickshaw from GTB Nagar to Buradi and Jaroda, to be around fifty rupees. Hamzakka asked one rickshaw puller while confirming Madhu’s statement as he asked for seventy. We dropped the idea of cycle rikshaw ride under the scorching sun then and there.

A vendor who sells belpuri directed us to opt for phat phat sewa jeep services to Jaroda as the DTC bus service is rare to that place. Madhu didn’t wait; occupied one central seat of the first available vehicle there. We also managed to get side seat and made Madhu as our chairman. With small jokes and discussions we reached our destination at Jaroda Part- 2. We had to walk little further to reach our destination and finally saw the Ra… Nivas, where our patient *Niranjay stays. The DNipCare team also met Mr Dominique, our volunteer and resident of Burari, who acted as our guide over phone to reach the location.

We stepped into second floor of the building. There, we saw one girl at her early twenties lying on the floor, with a very tired look on her face and nauseating. Among the four siblings she is the eldest sister of Niranjay and she is Ms Nirmala. We told her younger sister to give ORS for her to get rid of her weakness and lack of water in her body. Even after, the situation remains unchanged as she started vomiting again. Our Palliative team members decided to wait outside their room for a while so that the sick girl could get back to normalcy.

When we were back in their room after 20 minutes, the girl seemed to be refreshed herself a bit and started describing the saga of their melancholic life wherein she has to take care of three ailing members of her family. Her two younger sisters were going for menial job of packaging goods in dingy factory set up in the colony earning a meager sum of Rs.1500/- per month per head. So the lives of all the seven members of this Srivastava family were solely dependent on the amount remains in hand after payment of monthly rent of Rs.1500/- for their accommodation to the landlord. To add to their downfall even this job is now denied to one among the two sisters as she had been on leave for two days nursing their sick and paralyzed mother in hospital.

Their concerns and difficulties to meet both ends together were though not explicitly expressed, clearly understandable from the conversation. The expenses on treatment of all the three patients in the family were, as the saying goes, adding insult to injury. The worst shock in their life was on diagnosing Niranjay with blood cancer, cost of medicines and treatments for him. They told they couldn’t buy the complete dose of medicines prescribed for two weeks by AIIMS as it costs about twenty thousand rupees. We slowly felt the gravity of their pain, which they face in their life. The father, who used to do loading and unloading job in Delhi, has now developed heart problems and unable to even lift a bucketful of water.

Hamza(kka) asked about their studies and about their place where they born and brought up. Nirmala explained that difficult situation with a painful note. They had been compelled to leave their livelihood in Jharkhand and decided to reach Delhi in 2008 looking for treatment of their mother for paralysis. In the meantime her brother also fell ill due to blood cancer. Sooner their father was also detected with blocked heart valves. The series of adversity loomed over their family resulting their getting into deep depression. Now the family with seven members stands in an intricate situation with three of them constantly requiring medical and personal attention.

Niranjay, the slender youth of twenty-three years, wearing a sleeve less banian and holding a forlorn look on his face is well aware of the disease, blood cancer, he is suffering from. All the hopes and ambitions in his life carried throughout, being the eldest son of the family have been fade away now.

We enquired about the present treatment of Niranjay and understood that his immediate requirement is blood due to less HB count. Dominique, one of our volunteers immediately expressed his willingness to accompany Niranjay to AIIMs on the next day to donate his blood. It is also found that though the family now lives a life of the poorest of the poor, it doesn’t have a BPL card nor had any voter ID proof or any thing of that sort to establish their residency in Delhi and weak economic status for availing any benefits from Government.

Madhu, while checking their reports enquired about their breakfast and that unveiled another worry they carry in their life that they are often deprived of even a single time meal a day due to poverty. Though they didn’t say any thing directly, Madhu could assess and and confirm while counseling Niranjay alone outside their home that they haven’t had food for the past three days at all. That was the most painful thing to hear for not only him but all our team members.

After a while we told the family that we would reach back within a few minutes, as we had to take photocopies of the latest prescription and reports of Niranjay’s treatment. Our intention was to bring some immediate basic food ration to the family so that the family could withstand at least another fifteen days. Realizing the severity of the situation we bought and gave the food ration to this hapless family from a nearby shop. The moment felt so profound for them as they are not used to getting any such kind of intervention from anybody so far and we could see it their eyes filled with a sign of respite. We the volunteers under DNipCare were also feeling a little satisfied for the moment. But we were also quite aware of the long road ahead where we have to intervene regularly to ease out the difficulties and provide whatever possible comfort to the patient and his family....

By DNipCare team: (Ajith Kumar, Madhu, Domique Savio & KV Hamza)
*Name of the patient/family changed to hide their identity

 

 

A Time of Mourning

 

My dear friends,

With profound grief I am to inform that two members of our Palliative family passed away yesterday, 22.03.2010. They were Shri Raj Kumar Singh of Bhagalpur, Bihar and Shri Abdul Razzak of Sopole, Bihar.

We, the volunteers of DNipCare, have always been with these two patients at the time of crisis due to their diseases and were providing whatever possible by way of psycho-social and medical support. Now both of them are devoid of their physical pains in their heavenly abode.

Let us pray for the departed souls and wish God to bestow strength and courage to their families to cope up with the sorrow.
With regards,

k.v. hamza,
Gen. Secretary, DNipCare
9891008356

Few thoughts.....thought about sharing with

A few days before we were thinking loud in our monthly review meeting..What all we can do for Rajkumar, How can we take our services to him? Is he okay with the intervention by the Baba?

All were thinking, some loud, some silent, a few without seeing any options. Many difficulties we realized, but we could find a ray of hope also as Ajit sir told about his colleagues in the same district. It was a relief, at least one person to take our message to him that ' we are with you'. We again started planning for taking the services to him...

But the Un- beaten player- the death- has come on his time to put all our plans for Rajkumar to an abrupt stop.

Are we to fight against death? I feel we are not.

We are not fighting against him, but we are trying to help them to live away from the shadow of death, till the very moment he takes them away.

So my friends, be with our patients and their families and fill their moments with life till that inevitable moment

Regards,

Sumitha.C

 

Bidding a tearful farewell

Shyam Kumar Singh*, a poor auto driver, came face to face with the most difficult situation of his life when he was detected with having cancer. Even though he was the sole bread winner for the family, his left leg had to be amputated above the knee to curb further spread of cancer. His wife, being a woman of very simple nature & hailing from a rural back ground of the State of West Bengal had a lot of dreams for her three children, and was doing house hold jobs to make a living. After Shyam was detected with having such a chronic disease, the family suddenly felt doomed and sank into a great despair. The very same family is now wholly dependent on the hapless women, who herself had undergone a lot of hardships prior to her life with Shyam. There, DNipCare volunteers reached out with their helping hands by providing an initial moral support to the family and the patient. The technical team of our organization had also visited the patient numerous times to give them immediate relief, which was imminently required on those occasions for the family. We are also providing monthly ration to the family. Curative treatments were being received by him from AIIMS. Later, when the patient was admitted in AIIMS for lungs surgery he had a ray of hope of recovery but to his utter dismay the doctors had to tell his bad prognosis that his journey in life is very short.
The family further collapsed and their will to live diminished so much that death began to be viewed as a final relief. The patient gradually started to keep himself away from his wife and children and finally decided to go back to his ancestral home where he could get some relief during his last stage of life. He thought the presence of his brothers and other relatives there would help his family to do his last rites. At last we had to hear his plea for a ‘train journey back to his roots in Bhagalpur, Bihar’.
DNipCare arranged the train tickets for the patient including family members and the journey was about to start on the 28th day of February, 2010 at 2.00 pm. The moment was as heavy as many of us could not control our emotions. When our hamsa(kka) hugged, Shyam could not stop his emotions and tears were falling from his eyes on his realization at that moment that he would never be able to see us all further more. We could also hardly stop our tears at some moment. His wife too was praying for his life loudly by touching the hands of Sumitha, our volunteer. Our Doctor, Sandhya done his medical check up as he was feeling breathlessness after all the ordeals of getting into the compartment, consoled him and advised his wife to take necessary precautions while traveling. Our two volunteers Antony (sir) and Karim (sir) struggled very much to place his belongings inside the coach. Shyam was keenly observing all of us continuously up to when the train started moving. His wife’s waving hand till the last bogy reaches the end of the platform still remains unforgettable to all of us.

Ajith Kumar

I don’t have anything to add here except a few lines of what our great Rabindra Nath Tagore wrote:
“The numberless meetings and partings in the world, and on death the great parting, from which there is no return. The dictates of reason take a long time to assert their sway. The surest proofs meanwhile are disbelieved. One clings desperately to some vain hopes, till a day comes when it has sucked the heart dry and then it breaks through its bounds and departs. After that comes the misery of awakening, and then once again the longing to get back into the maze of the same mistake”.

k.v. hamza
*Name of Patient changed to hide identity

 

Palliative Care - Awareness Campaigns: 1) Kerala Club 2) Nanakpura Malayali Welfare Forum

 

Palliative Care Awareness Creation Program by DNipCare in;
1) KERALA CLUB, M-67 Connaught Place, New Delhi on 5th Marhc 2010

We at DNipCare had another opportunity of conducting an awareness class in Nanakpura Malayali Welfare Forum, Nanakpura, Delhi. As usual we were very happy and in high spirits for the class when we were informed that it would be a family meet. The representation was from all walks of life like housewives, teachers, nurses, businessmen, office-goers and ofcourse school and college kids.

On reaching I found that the meeting had been organised on a building terrace. In fact, I was quite surprised to see more of women than men in the meeting and a few kids too (as this occasion was just before the women's day it obviously felt right). We had planned an interactive class through out (instead of an interactive session at the end which is the usual norm).

As the class progressed I found the kids in the group were interacting much more than the adults. Though, the adults got into action at a later stage. What surprised me most was that the kids were not just repeating what I was saying but also answering to queries on palliative care with intelligent responses like meaning of ‘swanthanam’, "love, care, tenderness and progression of disease". This clearly indicates in them, an awareness of emotional issues, medical awareness, social issues in their own youthful capacity. I may also add that it also gives us a glimpse of their sensitivity, as a part of society, towards their fellow beings. I realized that I was really interacting with an intelligent group of kids and family and naturally this has swept me off my feet!


2)NANAKPURA MALAYALI WELFARE FORUM, Nanakpura, New Delhi

on 7th March 2010

 

Further, as the team-(volunteers) shared their experience with the audience, we could see that many hearts were touched. It was visible in their eyes and faces that they desired to do something in Palliative Care. Providence as usual saves the best for the last! A young girl about 12 came up and asked for all details of our organsitation. She said, she would like to join the group and do what we are doing for the palliative care patients. She wanted to be a volunteer just like all of us. There was determination in her eyes and in the words coming out of her mouth. I realized that we had conducted one of the best awareness classes in this part of Delhi. We had effectively reached out!

This was a great experience and I look forward to experiences like this in future because incidents like this also lifts mine and our teams spirit to do something more for those individuals and families, who are in need of palliative care

Dr Anjay

 

                                                                              

Life is just like a Sudoku-----Simple, Medium, and Hard sometimes!!

 

It was waiting at her door step, for long days, came silently, without any sign of danger...without any hesitation, in an area of Tilak Nagar, where Smt. Seema Narang*, an ordinary housewife lived with her husband and her 11 year old daughter. But, when time to reveal its face, it just revealed the canopy and that poor lady came to know that it was spreading in her body, the killer disease, cancer.....cervical.

In the middle of 2009, we got a call from Lekha teacher, who later on became one of our ardent volunteers, informing about smt. Narang. Teacher was, of course her next door neighbour.......

Our first visit:- It was on 20th June 09. A hot Sunday morning......we a group of 4, Hamzaji, Antony Sir, Kareem Sir and me took the metro to Tilak Nagar... We traced her house, which was easily identifiable due to presence of so many idols of Hindu goddesses kept nearby, in the bylines of Tilak Nagar. We were greeted by her husband and led to their dilapidated house. There on one corner stood Mrs. Seema, who was trying to maintain a pale smile on her face despite the awful pain in her lower abdomen. She was neither able to sit, nor stand as the pain does not subside. Her husband narrated the string of events and informed that the hospital where she underwent operation for Uterus Cancer has now asked for the CT scan to be done to diagnose the secondary development. The hospital has given a date after three months for scanning and so the poor lady had no choice, but bear with the pain as financial constrains made it difficult to get her diagnosed through scanning done elsewhere in order to start the treatment in the same Government hospital. We, the inexperienced volunteers however, decided to pool in money for getting her diagnosed and also conveyed the situation of this patient to our ever helping Dr. Sindhu Sunil Madam, whose medical intervention went a long way in mitigating the excruciating pain Seema was going through.

Our second visit:-

Our second visit was an abrupt one on the day when hospital authorities thrown the bad prognosis on face of the patient. Not only the patient, but her family comprising husband, daughter and father-in-law were in deep shock and crying when we managed to reach near her and with our concerted counseling for more than two hours we could not only calm down the patient but to our utter dismay a determination to live life despite oddities could be instilled in her. The confidence in life built by us then we made

It was after one week we along with our doctor friend Sh. Nishad visited Smt. Narang. He saw the diagnostic reports of progressing cervical cancer, but the patient was coming back to normalcy though on symptoms due to medication, unaware of the depth of the disease. She was already feeling well...probably our intervention worked out.... but this was the critical moment too....how to tell her when she was relaxing, smiling and sharing her life’s ups and downs with us. She was blushing profusely while narrating her happier times including love marriage. We were all like her long lost friends found again by this time.

Lekha teacher was of great help to Seema in her critical moments and so they were very close to each other. Later we realized that teacher was helpful not only to Seema, but plays the role of an agony aunt to the entire locality. So we were able to appraise Seema’s husband about the bad prognosis bit by bit through Lekha Teacher. We were also to make her understand that 'all was not well '. However, may be due to inexperience, we were instilling a hope for life in her by diverting her attention from all the sufferings she was going through. On our instance she was limping back to life with medicines, checkups, some religious texts, and even to write ghazals as hamzaji used to advise her. She started insisting for our long presence with her as it increases her confidence in life.

Weeks gone by, our visits also increased as we were well aware of the imminent in her case. On our specialist Sumitha joining the group visiting this patient things changed tremendously as Seema started opening up her heart further before Sumitha and Lekha teacher. She was unwinding all her worries....anxiety about her daughter, about her husband and all.

Her condition started deteriorating during the first week of July 2009. By the time we had really made a bond with her and the family. The doses of pain killers prescribed were increased considerably... still her ardent belief that the Goddesses around her house will not deprive her was the only hope left in her.....though knowing well we were also hoping some miracles to happen as she was more than a patient, say a sister, a family member, for all of us by then. Slowly and gradually she was becoming bedridden.... increased pain...more and more weak.....and loosing weight considerably. Her condition was even worse in the midst of July. Her hope was grim and we were supporting her and family socially and psychologically...

On a Tuesday evening, she invited all of us to tie Rakhi on Raksha Bandhan day. I could make it to accept her invitation. It was very painful to see her… She was in excruciating pain, still her happiness on my reaching there was felt through her scanty smile. She tied a beautiful Red Rakhi on my wrist......... that night, about to return her condition was severely critical and I along with Lekha Teacher took her to the nearest doctor and got some pain killer injections for a temporary relief....


Just a couple of days passed by, the message came from Lekha teacher that Seema needs to be hospitalized as she was seemed to be sinking. .....it was around 09-30 at night and we along with Hamzaji went to DDU...there she was given some more pain killers getting her temporary respite......We returned after 12.30......the following morning I got a message from Hamzaji that Smt. Seema Narang is no more…. I was shocked....nothing in my mind for a moment.....the Red beautiful Rakhi was holding tight on my wrist...........

Madhu Nair
(*Name of the patient changed to hide her identity)

 

A prolific Sunday evening

 

Yesterday I along with Hamza uncle visited Mrs. Soma Mukherjee*, at the Cancer Hospital. Though she appeared to be happy her family not being with her was really hurting her. During my first visit I was convinced that she was quite comfortable with her mom. But the way she broke down yesterday, I really have to rethink what I convinced myself. I have promised her that I'll be visiting her in the hospital before she leaves after her present chemo. And I really hope that I could keep my word.

HASNA NAJATH.P

Here is a patient whose sole companion in her battle against cancer (Rhabdomyosarcoma) are her own morbid thoughts. However, there is hardly a dull moment amongst her ward mates whom she keeps amused and distracted from their own sufferings by her sharp wit and repertoire of anecdotes. Soma is a young 30 year old woman with two kids and deserted by husband. I have given 15 years of my life to him, but he could not give me even 15 days of his life when I am ill and in dire need, she sums up the marital misery candidly. Even though the association of the volunteers of DNipCare with her is less than three months old, yet the enthusiasm to meet the patient increases exponentially after every visit since we think her to be one amongst us.

Soma unlike so many others in her situation believes in living life to the full and craves for education to stand on her own legs. The notebook withholding computer basics learned from newly joined classes is kept safely on her hospital bed. Her only complaint is that she forgets many things memorized from the note book due to ill effects of her disease or chemotherapy. She has also registered to appear in the matriculation examination through the school of open learning. It is but a well known fact that Soma used to be the leader of her colony’s womenfolk; be it for getting their bank accounts opened to persuading them to save in anticipation of adverse times. It may also sound ironic but her appreciation for the dressing sense of doctors and nurses even while she is undergoing surgery endears her to all of them.

The sunny day also draws to a close, coinciding closely with the hospital’s visiting hours. We left the hospital with heavy hearts, but with broad smiles on our faces till she could see us through the glass windows from her bed, only on Soma’s insistence. A thought flitted past my mind; was it I who counseled her to fight back the disease mentally or was it she who counseled me to be happy always the real counselor today? Of course, I still do have to visit the hospital once more before Rema is discharged; after all she is a member of our family, the Palliative family.

kv hamza
9891008356

(*Name of the patient changed to hide her identity)

 

Patient Visit - Volunteer's Experience

It was one of those unpleasant chilly weekends of January in Delhi, where people too like to stay away from the streets like the Sun. I ventured out alongwith a couple of friends who came to my place to spend the weekend. We needed to meet our team leader Karim Sir at CP to accompany him to one of their regular patient visits. It was going to be my first such visit as a volunteer.

First we went to Lekha Teacher’s house in Tilak Nagar. She told us about the three patients we intended to meet that day. She has already met them and was keeping track of the developments. As we were five in numbers she suggested we go by her old Matiz.

On our way we stopped by a departmental store and got all the monthly provisions for the patient. DNipCare has introduced this system and continuing for a while. Another level of involvement in those shattered lives.

After the initial struggles Karim Sir could negotiate smoothly through those narrow gallies ignoring the frequent groans of that withered car, at times going back to the roads we came by as Lekha teacher got bit confused about the route. And finally at around 3 pm we could knock the door of James* House.

James*.. a 12 year old boy with unevenly short hair on a recently shaven head was watching cartoon network then. He was suffering from brain cancer. But his eyes gleamed in joy as he saw Lekha teacher among the bunch of strangers who got into his room. She introduced the rest of the team to him and started chatting. About his recent vacation in Kerala among the other things. In between he mentioned about his next date of chemotherapy. I struggled to control that chocking sensation I felt when that word come out of his mouth as he was talking about his painting class.

He was not in a mood to remain gloomy. He told us about the comic movies he likes to watch… Imitated the voice of that famous Kerala politician everyone likes to hear… invited Lekha Teacher to spend the night in his house…

It surprised me the way he is keeping that unfortunate but cruel illness at bay. Not allowing it to take over his little joys in life making it easier even for the people who are around him.

I was not a well trained volunteer and I was ignorant of the methods of approaching a case like that. I left it to my instinct. And spent the rest of the time with his as with one of my high spirited little cousin brothers. While leaving him after a while I promised him to meet him again (a promise which I really want to keep).
My friends too were silent on our way back. I know what they feel as I was also going through an unprecedented emotional rollercoaster witnessing to those rare occasions of joy peeping out of pain and that of hope gleaming behind despair.
That was my first experience in DNipCare. The experience which made it sure to me that I want to continue with its programmes.

Me (Ajith) & Joseph & Surjith

(*Patients name changed to hide his identity)

 

 

DNipCare- Rehabilitation Program

 

DNipCare trying to rehabilitate the family of a patient

with a Sewing Machine

On a cold Sunday morning, with a recalcitrant sun playing a game of celestial hide and seek, the hustle and bustle in Pragati maidan in Delhi, currently playing host to the International Trade Fair is in full swing. However, for the volunteers of DNipCare, it is just yet another weekend to visit their enlisted ailing patients. The vehicle of one of the volunteers carrying four of them is headed to a dingy flat near Khadde vale masjid in Gautam Vihar at Tisri Pushta of Yamuna River. Imran Ahmed*, suffering from Cancer and prostate enlargement lives in a rented one room accommodation with two young unmarried daughters; forced to discontinue their education and his wife. Cycle rickshaws and thelas seldom give way to mechanized vehicles in these crowded narrow bylines, but the indomitable spirit of the volunteers is raring to do something different from their daily chores of livelihood. The four volunteers could not have been a greater study in contrasts: From one doing the job of advising his department under Government of India on its economic policies and programmes to a successful businessman managing his own establishment throughout the week while the third does the nitty gritty of the accounts and programmes in Central Government with the fourth being a qualified allopathic doctor utilizing his weekend holiday and rather enjoying in making it also a day to be with patients for mitigating their pains and problems. The common binding link that all four shares is the Palliative training they obtained on the same lines of rendering this care in Kerala for ailing patients suffering from long term or life limiting diseases. The car came to a screeching halt as a sewer stretched across the road is gaping open and there was hardly any space for a four wheeler to pass through. There was still over a mile of potholed, broken roads left to be covered to reach the residence of Imran Ahmed. The weighty issue was hardly given a thought before a quick decision to move the vehicle to another byline was taken, and we began to wend our way towards our destination, but it was not easy at all. The sewing machine, part of the rehabilitation package for the family of Imran Ahmed from DNipCare, was also to be carried along. It was a collaborative effort with the volunteers carrying the weighty machine in turns, all the way to meet with the wonderfully delighted smiles of the Ahmed family. DNipCare was finding a solution to the family’s immediate requirements of livelihood and thereafter to ponder over the ways and means to continue the education of his daughters after addressing the disease Ahmed is suffering from. The journey was not ending there, but next destination was a more distant Rohini residence of Mrs. Rema Mukherjee*, another cancer patient. The psycho-social and medical support under Palliative Care continues unabated on Saturdays and Sundays for the teams under DNipCare irrespective of the distance they have to traverse in this metropolitan city Delhi. Team combination and patients differ, but the focus of all remains the same; provide a possible quality life to the patients at their residences. Every volunteer has now realized that sympathy is not enough, but active thinking and action to make a difference in the lives of the hapless patients are the planks of Palliative Care discipline. The mission continues for the volunteers in every form whether it is carrying rice and wheat flour bags along with other provisional items to the deserving patients’ homes or taking the patients to the hospitals, diagnostic centers, providing medicines and required psycho social support by taking the active role as their own kith and kin to care.
(*Names of Patients changed to hide their identity)

kv hamza
Gen. Secretary

 

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