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PATIENT STORIES
A Patient Speaks
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How a Friend Saw It
From the Doctor's Perspective
Through the Eyes of a Carer

From the Doctor's Perspective

Lessons from a Patient
by Dr Aditi Chaturvedi


Monika Ahuja: A changing force in my life who will always remain in me. Thank you Palliative Care, for the lessons of life that you have re-enforced.


She smiled softly and asked, “How are you Madam?” It was not any casual remark and she also did not expect any casual reply. She was truly concerned about how I was doing, as the last visit I had made to her house had brought tears to my eyes when she played the guitar and sang the song—“Hai Tuti Sari Ki Sari Mein” (I am completely broken). Amazed at the concern a patient could have in a situation when she herself is suffering all the trauma of disease and treatment and not knowing what to say, as I had prepared myself to ask this question to her, I replied “I am doing fine, dear, and I want to assure you that please don’t hesitate to share your problems with me because you saw tears in my eyes last week and never think that I am weak from inside, the tears come for that moment and later as I leave to see another patient I am fine”.

I was trying my best to dodge this beautiful angel of 25 years of age who was leaving her mark on me. She was diagnosed in 2011 with Left Leg Sarcoma and had it operated, she had received 25 cycles of radiotherapy locally in the affected region. She was advised to take pazopanib for few months. She developed lung metastasis. Repeated PET scan revealed hypermetabolic lung nodules which were not responding to pazopanib. She was operated on again, Bilateral Metastectomy in the lungs in August 2015. She received 6 cycles of chemotherapy, gemcitabine and neurokine from May 2015-November 2015.

In the last one and a half years of my experience in palliative care I had learnt to deal with both the emotions of the patients and with my own emotions but she seemed a challenge. She would often pose questions such as, “Why are we born? Why do we have to suffer?” Having no specific answers to these spiritual questions, I tried to bring some spiritual books to her till I realized that it was not working for her and something else needed to be tried. We both decided that as she loved to play the guitar, she should pursue this passion on days when the effect of pazopanib waned and she felt better. I had started feeling stronger as she picked up guitar skills and would often play for me and our palliative care nurse when we would visit her every week.

This went on but I started to feel weak again inside, weak with amazement when Monika started to physically deteriorate in front of me but her singing and guitar playing kept on improving conveying through whatever she sang that how broken she is from inside and how deeply she wishes that this suffering should come to an end. She would sing songs preparing all of us for how to live and move on in life without her. She would sing songs of what we should do when we remember her after she has left us (“Mein Rahoon ya Na Rahoon Tu mujhme kahi Baki Rehna. Mujhe neend aye akhari tum khwabon mein aate rehna. Kisi Roz Barish joh aye samajh lena boondo mein mein hu. Subah Dhoop tumko sataye Samajh lena kirno mein mein Hun”—Whether I remain or not, you remain in me. When it’s my last sleep please come in my dreams. Any day if it rains imagine that I am in the drops and when the sunshine disturbs you in the morning imagine I am in the rays.). Such preparedness for death is astonishing to all of us at the Hospice and we all wonder if we will be able to prepare ourselves for our own end of life in the way Monika is doing?

She has gradually become my inspiration and I often wait to learn more from what she says and feels.  She is different from the rest of patients, concerned for everyone around, father, sister, brother, friend, doctor, nurse, other patients. She is prepared for her end of life and is preparing others for the same, as everyone around seem weak in front of her ever increasing energy. She conveys intermittently- “All this money and materialism is going to be left here, what remains for ever is the love and concern that we have for each other. No one can take money along up there but we can take along and leave behind memories of love and fondness.” Recollecting these words again and again, I realized that my personal life is turning too and I make decisions which are more for the concern of my family and friends and less for my personal interests.

Her singing keeps on improving and now her friend accompanies her in her singing. They both started to perform in small concerts and people would appreciate her and she started to feel like a little star. She would share that as time is approaching for her end most of her wishes seem to get fulfilled. She shared that she wanted to be known and remembered –and that had started to happen.

How deeply this conveys human instinct to be loved, known and remembered by all and how important it is in palliative care to convey that I will remember you always.

She now wished that her parents should drop their egos at least for her and would stop fighting over small things conveying very strongly again to me that how important it is to drop our egos for love. She requested the palliative care team to help her share this with her parents and she took our help to convey to her family her current disease status and that she has little time left. She does not want to waste time in false assurances from father and sister that everything will be fine.

Just as the palliative care team had started to feel incomplete to handle emotions for Monika and her family, a palliative care psychiatrist helped us to unfold the truth for the family, re-enforcing the fact that help will always arise in need. I am so grateful to two wonderful doctors who are supporting our team, who stand by with us when Monika has now developed brain metastasis and oncologists share that she has only a few months left. Monika is presently receiving radiotherapy in the regional cancer centre and sets another example for the palliative care team as she sings for the cancer patients while waiting for her turn for radiotherapy. The Cancer Hospital doctors and nurses are surprised to see her perform and congratulated our heroine.

We are now working with the fears which trouble Monika intermittently about the future, of getting more pain near the end of life and about getting paralyzed. Amidst her fears and concerns of death and dying she stands alone inspiring people around her not to give up living till the last.

Monika has very strongly re-enforced the lessons of life to me which I felt must tell to our friends, as we often forget in the race of life of always wanting and achieving to sit back and think about concern and care for our loved ones, about our over-concerns for wealth (how much do we actually want), about dissolving egos, about thinking about why suffering happens, about living life till the last and the desire to be always loved and remembered.
 
 Thank you Monika, for being an inspiration to me. I will always remember you.

One of My Experiences at Ganga Prem Hospice
by Dr Madeleine Urstein

A beautiful moment, a beautiful experience, and a different way for me to contemplate as go back to my western land.

Mataji welcomes us: the house is simple and fresh. Passing by a cracked door we see a man lying down, paralyzed: her husband.

We sit down in the living room, "we", the Ganga Prem Hospice Team, a masseuse, a social worker, a nurse, myself and my daughter, both doctors.

Dr. Madeleine (Right) with her daughter Dr. Dominique
Mataji speaks of her many surgeries, for the 3 different types of cancer her body is suffering from. She shows us her many scars, especially the one in the leg that recently became painful again. She has medication for the pain, but doesn't dare take it. In the physical examination, the leg shows inflammation, possibly from a recurrence? It takes a lot to convince her to have it checked by an oncologist at the clinic: she is tired of being sick.

Around that topic her words become faster and she starts sharing the many challenges of her difficult life: her husband bedridden and needing so much help, the sickness of her son, also fighting with cancer, and the death of one of her grand children, also from this terrible disease that seem to spread in the family.

The whole story hurts, she is all pain.

During this time, the masseuse rubs her back, the nurse checks her sugar level, we give medical advice; but most of all, we are all around her, allowing her to express herself, simply caring for her and pointing to the courage needed to endure so much.

Progressively, the atmosphere becomes relaxed, a gentle smile shines again on her face. Mataji sits back up, orders her granddaughter to bring us chai and cookies, even though we tell her not to.

The consultation is transformed in a warm 5 o'clock tea time. We chat and Mataji finally brings out the bag of medicines we had wanted to check since the beginning of our meeting. She shows us them one by one, the one she might take, and the ones she will not take. After some clarifications, we get up to leave. To my great surprise, she then took me and held me in her arms, warmly, as if I were a daughter, in a bath of affection.

As during so many other moments during this time in India, the gratitude expressed goes beyond what had been given.

A beautiful moment, a beautiful experience, and a different way for me to think about as go back to my western land.

My Experience at Ganga Prem Hospice
(by Dr Rajiv Kumar Saxena)

I am a novice to the field of palliative care. My firsthand experience after four days of home care visits has been very touching and satisfying.

I was overwhelmed by the love and affection received from the patients and their relatives. In the era of ever growing queues at hospitals and long waiting periods at consultants' chambers, our home care visits were seen as a God sent gift. Except for a few, most of the patients were in great agony. Physical ailments (mainly pain) have taken a toll on their confidence and morale.
Dr Saxena examining a patient in her home

We were seen as someone with the Midas touch who could offer some miraculous cure. Primarily I tried to boost their morale and dispense medicines according to their complaints, but their needs go beyond alleviation of symptoms and reassurance. Some were unable to carry out further treatment because of financial constraints and the high cost of treatment involved. Even a minuscule percentage of financial aid can make a drastic improvement in the cancer patient's treatment by not just improving quality of life but by prolonging it also.

Patience is a primary trait which we have to develop. Listening, responding to concerns and providing relief from physical ailments, as well as dealing with social, psychological, cultural and spiritual needs of patients and their family members should be our primary objective. We can not change their destiny but our efforts can make an appreciable difference. Caring is as paramount as curing. Our patients need and deserve our empathy.

Ours is a small but significant step in cancer care. I hope that in time it will come to grow to much bigger heights. It will help us to achieve our goal of improving the quality of life of patients and their families.

 

Do We Have Control Over Dying?
(by Dr AK Dewan)

I have witnessed the death of people who have learnt to love fully. Such deaths are peaceful, pain free, a letting go; deaths in which no time is spent dying.

Many times, you might have observed elderly people having a premonition about their dying. They are at peace. They might announce their end a few hours before their actual demise. I vividly remember my grand father saying, Call my daughter in law and my grand children. I may not see the sunset.

 
 
After a few hours he closed his eyes. I have witnessed the death of people who have learnt to love fully. Such deaths are peaceful, pain free, a letting go; deaths in which no time is spent dying. They don't have pain because there is no conflict in their lives. They are at peace and are comfortable. When they die, they are choosing to leave their bodies because they think they can't use them for loving anymore.
 

Do we have some control over our own dying? You may not agree with me if I say 'yes' but there is often proof of this when people die in a hospital. The majority of patients die in the early hours of the morning when the lifesavers are resting and when family members have left or fallen asleep. Probably all these patients are constantly balancing the rewards of life versus the cost of living . We must realize that patients are not 'living or dying' but 'alive or dead'. If someone is called 'terminally ill,' he is often treated as dead. This is wrong. If one is alive, one can still laugh, live and love.

An elderly lady, Mrs. Kee (name changed) was receiving chemotherapy for her advanced breast cancer. Her husband met with an accident and was admitted in the ICU of a multi specialty hospital. He required ventilatory support at night. Relatives did not want to tell Mrs. Kee about the condition of her husband. The next day we came to know that both husband and wife had passed away. Mrs. Kee followed Mr. Kee after a gap of just 5 minutes. The cause of death in the case of Mrs. Kee could not be ascertained. This was probably a living death where feelings were unspoken, conflicts unresolved. Sometimes life goes on only for the sake of others.

Death can be natural and peaceful. A young patient of mine was loved and taken care of so well in his last days that he left a note at the time of his death saying, The last month of my life was the best period of my life. Thank you for the love showered on me. I am taking it with me. On the other hand, death can be artificially prolonged with needles, tubes and ventilators and become a life without dignity. This is not control at the time of death. Control at the time of dying is natural, peaceful and subconscious.



PATIENT'S STORIES
Cancer patients and their loved ones are invited to write to us about their views, thoughts and feelings. We will include as many letters, articles and stories as is possible in these web pages.

Please send your article to Nani Ma: nanima@gangapremhospice.org

 
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