Pain in Bali – Kurnia Ito’s narrative

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I did not visit Rini for a week after finding her peacefully asleep after the new medication. Then Arman called me. Following my advice about how to get free treatment, he had taken the required certificate to the hospital office to get it stamped. He had to wait a long time to get it stamped, and by the time he got back to the outpatient department, it was beyond the scheduled outpatient time; they could not see Rini.

And the stamp on the certificate was valid only for that day. So he went very early the next day, stood in line, and got the stamp early enough, but then the clinic would not see her because her appointment was for the previous day. They could give her another appointment only after another 2 weeks. Arman went and talked to a doctor who had seen Rini earlier. But he could not help; it was not his department.

I could not find any words to console this young couple. What a cruel system! I have a question in my mind. Does seeing a lot of diseases and suffering numb doctors’ minds? 

Two weeks later, Rini finally got her consultation. As they found her pain-free and as the swelling in her tummy was less, they advised more chemotherapy. But was the improvement not because of the dexamethasone and the pain relief? Will more chemotherapy really help or will it worsen her condition? I did not know. Anyway, they admitted her to the hospital for chemotherapy. I visited her. Even before I reached the ward, I could hear Rini screaming. She was in pain because the pain medicines had been stopped. The ward nurse did not seem to know much about pain relief. He would give only 10 mg MST twice daily and also an infusion of pethidine (meperidine). He said both were at the maximum possible dose. I whispered to Arman to give her two more tablets of MST. He did and thereafter Rini was a bit better.

I visited her children in their home. Fortunately, Arman’s mother had come over for the time being and was taking care of the children. I also asked Arman to sign a petition to a well-known charity club for assistance, although I was not too hopeful. It seems easier to get people interested in cute cats than in terminally ill people in pain!

After a few days, I returned to the hospital to visit Rini. She had bathed and applied some make-up and was looking good. The MST and clonazepam seemed to have made her a bit sleepy, though. Later, I went to one of the specialist doctors treating her. I did not go alone; I took a mutual friend with me.That was good strategy. He was a bit friendlier than usual. “If you want to help Rini, lead her to God,” he said. “Prepare her to face death with dignity.”

How she can have dignity if she is rolling in pain, I asked myself. Forget it, I added to myself; the important thing is that the introduction of the mutual friend to the scene may make the doctor kinder to Rini when he sees her next time.

Then the two of us went to meet Arman. We conveyed the bad news about the prognosis to him. We did so not in the blunt way the doctor had talked to us, but sensitively. I also went to meet Arman’s boss. I explained to him about Rini’s situation and extracted a promise from him that he would not fire Arman even if he is irregular. These are the little things that I can do. How will the two children eat if Arman loses his job!

Finally, Arman decided to get the urinary stent changed, although the doctor was not enthusiastic about the procedure. I told myself to go along with Arman’s decision; he was clutching at every straw.

When I visited Rini next, she seemed to be rather peaceful. She held my hand, with gratitude showing in her wet eyes. I gave her a prescription for sustained-release morphine (this prescription from the doctor is the hardest thing to get!) and some money.

The subsequent week, I accompanied Rini when she was getting her next palliative chemotherapy. She had obviously deteriorated. There were strange ulcers on her body. There was an obvious bulge on the middle of her tummy. Her disease was worsening! She had also become very irritable. However hard he tried, Arman could not please her. He was no longer able to bear the pressure. Rini had pain all over the body and was crying most of the time. Even touching the skin caused pain!

She had the chemotherapy anyway. She had to spend 18 hours in the emergency room before she got a bed. She was able to talk now over the phone and was complaining less. She was now having fever off and on. I asked her to present one of her beautiful smiles to her doctor and see how he returned the smile. Rini laughed over the phone.

I had never studied palliative care formally. I just say and do things that come naturally to me. I told her to forgive me if at any time my words or actions annoyed her. When the conversation turned to the subject of my own health, she responded quickly and with passion, “No, no, nothing must happen to you. If you fall ill, who will be there to help people like me? I shall pray for you. Always.”

I got an anonymous call from a potential donor asking what she could do for me. I told her that all my focus was on Rini now; whatever you can, give to her. The person sent some milk powder and fruits to Rini. Really an anonymous angel.

I thought Rini seemed more comfortable in the hospital. Back in her own home, her only company was her enemy, her pain, in her little room! But then the next time when I called and Arman picked up the phone in the hospital, I could hear Rini screaming in pain in the hospital ward. One tablet of MST a day and an injection of pethidine were all that she was given. I advised Arman in confidence to give 20 mg of MST without the nurse’s permission as the doctor had advised it earlier. When I gave the confidence, Arman did it. How longer could she be kept free from pain? The cost of MST was putting a hole in the family’s pocket.

The next time I saw her she was no longer quite herself. She did not recognize me. I was told that she would wake up at times only to scream aloud. During one of those paroxysms, she fell off the bed; the nurse had to give her an injection to calm her.

Her kidneys were failing and her consciousness began to wane. On the 5th of May, 2010, Arman brought the children along to bid goodbye to their mother. He asked her forgiveness for all his lapses and forgave her. He promised in her ear to look after the children. Rini then shook once and took her last breath.

I felt sad; not only because she died, but also because she died without dignity.

Now in 2015, things have changed for the better. The general hospital has a proper palliative care unit and a palliative care ward. Perhaps the day is coming when people like Rini can live and die with dignity.

This article was originally published as part of the series: Narratives in Pain, Suffering and Relief in the Journal of Pain & Palliative Care Pharmacotherapy. It is republished with permission. To view the original article please visit the journal online.

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