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Moving on a Palliative care

How can you hide from what never goes away?

Through January and February 2015, Arun had his last two cycles of chemotherapy. In the beginning of January the pain had returned. The reappearance of pain was a sign of disease progression. He now needed round-the-clock pain medication to keep him comfortable. It was evident that, in spite of the chemotherapy being given, his disease was getting the upper hand. Further treatment would be ineffective and unlikely to benefit him.

Arun's worst fear had returned. The pain brought with it intense suffering. Around the time of the last chemotherapy session in February, he had breakthrough pain with no relief from the pain medication. As a result, a pain patch was added to the oral pain medicine he was taking round-the- clock. The endeavour now was to provide complete pain relief. With the addition of the pain patch, his discomfort disappeared and he was at ease.

Non-conventional Treatment

He had come to the end of the line with the known conventional chemotherapeutic drugs, so we tried non- conventional treatment. He was given a new drug, Avastin, which blocked new blood vessel formation-essential for the nutritional needs of a spreading cancer-in an attempt to see if it would somehow halt the progress of the disease. These drugs were usually prescribed for the treatment of other malignant tumours-not prostate cancer.

However, this trial proved futile and the PSA continued to rise during both these cycles of chemotherapy. The bone required blood and platelet transfusion. Clearly, marrow, scan also registered an increase in the number of lesions. As the tumour relentlessly continued to replace the bone he it was growing unchecked.

These new drugs were given on the assumption that they would suppress all rapidly proliferating cells by interfering with the blood supply of the growing tumour. The primary target was the tumour in the bone, though secondarily, the normal cells of the bone marrow were also taking a hit-an unavoidable collateral damage. It turned out to be a double- blow-the tumour was replacing the bone marrow while the chemotherapy was suppressing production of the normal blood cells. Therefore, blood and platelet transfusions became a necessity, along with stopping the chemotherapy. This was the only way forward now. The body had endured a lot, trying to cope with the ravages of the disease in the form of bone metastasis. Added to this was the burden of marrow destruction—the side-effect of the treatment.

These last two cycles of non-conventional chemotherapy had been difficult. The described toxicity for these chemotherapeutic drugs was upsetting—there was bleeding from the nose and mouth due to low platelet counts. This added further stress on the bone marrow, which was already stretched thin. Blood loss triggers bone marrow proliferation, but where was the marrow? It was being destroyed by the tumour and being suppressed by the treatment. Fortunately, these episodes of bleeding lasted only for three days. As the effect of the transfusion kicked in, the bleeding stopped. With medications prescribed in the discharge summary and multiple small meals, Arun was kept hydrated and nourished.

Arun said to me, 'I did the last two rounds because I did not want to disappoint any one, not my friends or family I did it all the same. I don't think this is really working and particularly not you, Arati. It has been hard for me, but this is not really living. I can't enjoy anything anymore-not  the food I eat, not even my grandchildren, as I am constantly feeling unwell. I have had a good life so far and have no regrets. Death is inevitable now. Let's leave it up to God... The stage has come to call it quits. Look at what it is doing to my body! It is not worth the struggle. It is a losing battle.'

End of Chemotherapy

Arun had been squeamish about blood and wary of needles all his life, but the two and a half years of chemotherapy had changed him as a person. All these adversities that he had overcome had made him very brave. This inner strength must have come from his desire to not let anyone down, But it was now obvious to him that he was unlikely to gain from any further chemotherapy. Besides, it was adding to his misery and creating unnecessary complications. Arun wanted to stop all treatment and go on to supportive care.

We talked to his treating oncologist, who agreed that the treatment had failed. He admitted, 'All three parameters that have been used to monitor him throughout his therapy are clearly showing progression of disease and failure of chemotherapy.' We consulted other oncologists in Delhi, as well as our friend in Boston, Dr Paul Mathews, who had participated in so many of our decisions. Everyone was on the same page. The time had come to stop chemotherapy and move on to palliative care.

Shifting to Palliative

Care Two weeks after stopping the treatment, Arun felt better. He managed to eat more per meal, so we reduced the number of meals from eight to six per day. He could do short walks from the house to the gate about fifty meters--twice a day. He was back to visiting the grandchildren every afternoon. However, he could no longer navigate the stairs and used the lift instead to get to their second floor apartment.

A palliative care team from CanSupport visited Arun.  visit by dily decline relephonic It comprised of a doctor, a nurse, and a social worker. There was no priest. They visited once a month, but were a phone call away when the need arose, welcoming telephonic discussion at any time. This was an ideal arrangement, reassuring to the patient and to the caregiver without being intrusive. All three visitors were cheerful, with a ready smile, and were always willing to lend an ear. They assessed many things in the home and the diet, and gave tips to improve the quality of care being given to the patient. Arun was always reassured by this interaction. For the pain, he consulted a specialist in pain management. Mostly, the medication kept the pain in check.

As his illness progressed he sought comfort from the Church. He made contact with two priests. This resulted in a home visit by one of them. Once they realized that his condition was steadily declining and he was unable to come to church, the priests kept in telephonic contact and made one or two visits per month.

Reverend Winston Samuel-one of the priests who visited-was himself suffering from cancer, and was on palliative care. His own affliction did not deter him from making these visits and providing comfort to another. His Visits gave Arun a great deal of strength and solace. The other priest, Dr Paul Swarup, was quite articulate, often talking at length with Arun. Comforting patients through Sickness at home should be a social obligation for all priests, and without financial implications.

Careful planning, with an understanding of the processes Involved, ensured that Arun's weight loss was limited to 5 Os during the five years of treatment-mostly occurring uring chemotherapy. Arun did not develop cachexia (the Sting syndrome associated with cancer or other chronic ases). He had eaten two eggs daily, apart from meat, fish poultry, which was consumed once a day during palliative Additional protein supplements were added to the diseases) or poultry, which care. Addition milk or juice, whose vitamins had also benefited him. His taste had improved greatly and he no longer had anorexia or nausca.

Arun realized that he had come to the end of the road. He had short spurts of energy which he utilized to enjoy meeting friends and family and eating out. However, travelling, which had been an integral part of his life, crucial to his quality of life, was now out of the question. At the end of March, we celebrated our son, Adil's, birthday. This was possibly the last meal which Arun ate outside.

His daily visits to the grandchildren were also becoming difficult. By the first week of April, he could manage two visits a week and these, too, left him very tired. One night, even though there were grab rails, he was unable to get off the commode unaided. It took a great deal of effort on my part to help him back to bed. My major concern had always been that a fall in his condition could result in a fracture of his diseased hip. It was inevitable that help would be required at night, so the next day I arranged for a night attendant to help him with the stiffness in his legs.

On May 1, we celebrated his sixty-seventh birthday at home, with my brother and his family. Arun wanted to eat Chinese food. He attended his party in a wheelchair, sat and interacted with everyone for about an hour, ate some dinner, cut the cake and returned to his room, quite exhausted.

By now, he was also developing an enormous amount of anxiety. Some of it was related to his expected demise, but that he could mostly take in his stride. Rather, most of his apprehensions were related to the family members, those that he was leaving behind. Arun had been a journalist, sensitive to the changing scenario in India and the general state of unrest in the country. The level of social unrest around the country in 2014-15 was something we had non really witnessed in our growing-up years. The comples intolerance and polarization that was taking place in society made the minoriti invisible to the ruli de the minorities unsure and insecure-he had Muslim conds and was a Christian himself. All this was a ible to the ruling elites but it bothered him to no end. often wondered, with the rising communal turmoil, what the future held for our grandchildren.

 Haematuria and the Growing Tumour

Towards the end of May he developed haematuria (blood in the urine) at six a.m. one morning. I realized that he required hospitalization. The oncology centre, which he had previously attended for his chemotherapy, was at least an hour's drive from home, provided the Delhi traffic was light. Arun was practical and felt that since admission was a distinct possibility, we should try and find a hospital in the vicinity of our home. A surgeon colleague of mine suggested a multi-speciality hospital ten minutes away and promised to speak to the urologist there.

We arrived in casualty and were immediately attended to by a young consultant in urology. He was efficient, and started a bladder wash in no time, removing the clots and establishing the free flow of urine. Arun was admitted and formalities completed by ten. Things were beginning to settle down. Blood needed to be arranged the donors had arrived and I went to the blood bank to request for fresh blood so that Arun could get the maximum benefit from the transfusion.

Blood is normally separated into its components in the blood bank. These components, depending on the patient's requirements, are then transfused. In this way, the same unit of blood can benefit more than one patient. Arun's requirement was for red blood cells and platelets. As platelets have a short shelf life, these are invariably given fresh. The red blood cells, on the other hand, have a longer elf life of up to forty-two days. Understandably, as the Ood ages, the senescent red cells are destroyed. Therefore, the transfusion of older blood is likely to be less effective In Arun's condition, the fresher the blood the longer it was likely to sustain his needs. He had developed anaemia for two reasons: marrow replacement by tumour and the blood loss because of haematuria.

It was obvious that, by now, the tumour was growing unchecked and had infiltrated the urinary bladder-causing obstruction leading to the retention of urine, infection and haematuria. In palliative care, the treatment is supportive, taking care of symptoms as they develop. In Arun's case it involved removing the obstruction, controlling the infection and replacing the blood loss.

So far Arun had taken every day as it had come, but during this admission he became completely disoriented, The stay in the hospital weakened him greatly. Far from restoring his health, he got sicker and lost the will to fight his disease. He remained in the hospital for three nights. Though his problem settled, and the urine cleared, we found him unwilling to stay on.

Arun was not one to complain, but something had changed during this admission. It seemed like the spark had gone out of his eyes. His desire to continue the fight against cancer was no longer there. He felt claustrophobic and incarcerated in the hospital. As soon as his condition was stable enough for me to manage him myself, I brought him home on a catheter and on antibiotics.