Quality of life to the chronically and critically ill

Within a fortnight, I lost 2 men I knew to heart attack and cancer. One was in his late forties while the other was in his early sixties. I regret not spending more time to know the latter for he was once my mentor and trainer when I started my career. His tall, confident and reassuring frame is etched vividly in my mind. In fact, his hyponasal voice rings in my ears as I write. It had been at least 2 years since I last saw him, so I cannot help thinking about him and how he had coped with his cancer and pain. He had managed to keep his illness a secret so well.

The man who suffered a heart attack was my girlfriend’s brother. I was invited to spend time alone with her elderly parents because they could not come to terms with his sudden departure. Their son left behind a widow and two teenage children. “Why did God take him away so suddenly?” her inconsolable father asked repeatedly. While we sought comfort in God’s promises by reading our Bible, we found ourselves discussing about the quality of life his son would have if he was still alive today.

How does one define ‘quality of life’? Let us refer to 2 definitions below:

  1. The general well-being of a person or society, defined in terms of health and happiness, rather than wealth.”

Source: The Collins Dictionary

2. Quality of life is multidimensional. Coverage may be categorised within five dimensions:

  • physical well-being
  • material well-being
  • social well-being
  • emotional well-being
  • development and activity

Source: Welsh Centre for Learning Disabilities Applied Research Unit, University of Wales College of Medicine

How one measures quality of life depends on his life circumstances and the roles that he plays in society. For a full-time housewife who is not expected to actively work to earn an income, having quality of life to her may mean having time alone to drink a cup of coffee and enjoy reading the newspapers at 3 p.m. daily, after she has completed the domestic chores, minded the children and prepared her meals. To a full-time breadwinner in the family, having quality of life may mean having the financial means, energy and stamina to engage in a sport or hobby he enjoys after work. To full-time students, it could mean having the time and permission from parents to play or to have a little more sleep.

But what does quality of life mean to a chronically ill and critically ill patient? We find this third definition from MedicineNet, Inc. most apt. It defines ‘quality of life’ as “the patient’s ability to enjoy normal life activities.” The Life Insurance Association defines these normal living activities as ‘Activities of Daily Living (ADLs)’ which are outlined in the table below.

Table 1: Activities of Daily Living (ADLs), Life Insurance Association Singapore

Normal life activities or ADLs include simple acts that healthy people typically take for granted. To illustrate, feeding includes one’s ability to lift up a spoon or hold a cup to feed himself. It includes one’s ability to hold food and fluids in the mouth, and to chew and swallow. Dressing includes one’s ability to button up, pull up a zip or put on socks and shoes. Toileting includes one’s ability to relieve his bowels without the help of others or that of diapers. Living normally involves more than one’s ability to walk and run. It means being able to speak, laugh and cry whenever one needs to and desires to. For the chronically and critically ill, living normally involves one’s ability to make simple day-to-day choices without aid or with as little aid as possible. For those who need aid, it involves grace, inner peace and harmony to accept help from others.

We don’t have straightforward answers as to why our dear friends and family are called home before our time. What we know is life on earth is never meant to be everlasting. Each of us has a biological clock and a purpose to live for. Respecting this clock involves loving and embracing life and our purpose in life to the best of our abilities.

Would my two friends be better off alive given their critical medical conditions? Knowing their persistence and perseverance, I am certain that they had both fought their best fight. It would have been very painful for them not to be able to fulfil their normal daily activities of living. By faith, I am confident they are now in a better place. We, who are living, must learn to let go and be grateful for our quality of life.

I miss you, guys.

Pumpkin and Friends

Peter, Peter, pumpkin eater,

Had a wife and couldn’t keep her.

He put her in a pumpkin shell,

And there he kept her very, very well.

When I was little, I used to ponder a lot about Peter and his wife. What sort of a man would put his lover inside a pumpkin shell? Much to her annoyance, my poor mother was obliged to spin a tale every day about how Peter’s wife got on in her pumpkin home every day. “How did she stretch her legs? How did she get out of the house?” I used to demand. Then, I was introduced to Cinderella. I marvelled at how Cinderella’s fairy godmother transformed the pumpkin into a carriage with just a tap of her magic wand. Because of these nursery tales, the pumpkin won a special and sacred place in my heart. Since my mother had never bought a pumpkin, I imagined it to be extremely expensive and unavailable in Singapore. I was about 10 the first time I tried a small slice of pumpkin. It was air-flown from Japan and reserved only for my father. I remember steam escaping from its creamy orange yellow texture, its warmth and sweetness coating every inch of my inexperienced palate. The dark green pumpkin with its golden flesh was treasure that a Japanese visitor finally unearthed from my childhood fantasies.

Since I got married, I have learned quite a bit about the nutritional benefits one can yield from a pumpkin. Contrary to my imagination that pumpkins were only available in faraway lands shrouded in mystique, they are conveniently available at the local wet market and supermarkets. Now that I have my own kitchen, I always have a pumpkin sitting in my refrigerator and I make sure that Pumpkin is always accompanied by an assortment of his colourful cousins and nephews: tomatoes, carrots, corn, horse radish, broccoli, spinach, kale, lettuce, celery, white radish, sweet potatoes, beetroot, and cabbage. I figured in my childhood that Pumpkin and Peter’s wife must have been bored with each other. Pumpkin needs friends, just like all of us.

Cooking for Kai Ma, who is vegetarian has roused my interest in preparing vegetarian meals for convalescents. I am not interested in gluten based vegetarian meals such as mock duck or chicken because they are laced with oil, sugar, soy sauce, and salt. When a patient develops mouth ulcers and is unable to put on dentures, chewing and swallowing can become challenging. Porridge is a typical Asian convalescent diet served at home and at the hospitals. However, how much nutrition can one obtain from a bowl of plain porridge? While non-vegetarians have the option to supplement their diet with fish soup, chicken essence and other tonics, how does a vegetarian patient obtain an adequate portion of nutrition besides consuming only porridge, tofu, eggs and soy bean curd or milk daily? Asians, particularly the elderly, are not used to or open to trying wholegrains such as oatmeal, bran and quinoa. I have come across many who routinely eat only bottled preserved cai sim (pickled vegetables) with plain porridge because that is just what they are used to eating since their youth.

I have learned that it takes a bit of education, adjustment and compromise for both the patient and the caregiver. Generally, advice from a close family member is hardly appreciated. Advice from a third party, however, tends to work wonders. For this reason, it is important for the patient and caregiver to consult a clinical dietician appointed by the patient’s principal specialist. A clinical dietician works hand-in-hand with the principal doctor and his team, and would therefore be the ideal person to advise the food portions to be given to the patient. How much nutrition one requires varies between individuals because every medical condition and patient is unique.

Just as a specific nutritional deficiency can trigger a medical condition, a medical condition and its treatment can also potentially lead to different types of nutritional deficiencies. Having said this, clinical dieticians are not chefs or culinary professionals. The primary caregiver who prepares meals for the patient needs to be creative and flexible to innovate in the kitchen, and of course have a lot of patience to coax the patient to consume the well-intentioned meals. Love is always the most important ingredient in every recipe.

Colours from an assortment of vegetables not only add energy to a dish, they complete a meal with distinct nutrients and dietary fibre not found in animal protein. If I had had more time then to prepare Kai Ma’s meals, I would have pureed Pumpkin and his friends. Pureeing a whole pumpkin or a whole broccoli means the patient consumes a whole pumpkin or broccoli along with its health benefits.

Pureed vegetables have a smoother texture that allows saliva and digestive enzymes to start breaking it down as soon as it enters the mouth. To enhance digestion, it is best to thicken the consistency of pureed vegetables with less fluid or stock. This is because most people tend to ‘drink’ pureed foods as though they were fluids. ‘Drinking’ pureed foods does not allow the food to interact long enough with saliva and this could inhibit digestion. It is recommended that patients gently swish the pureed food in their mouth before swallowing it. This gives the saliva time to break down the food. It also allows the mucous membrane lining the inside of the mouth to absorb nutrients. Although stomach acidity, bile secretion from the gallbladder and enzyme secretion from the pancreas are also important factors in the process of digestion, we need to respect that saliva plays an equally vital role in the digestive system.

Some patients have complained that porridge and pureed food remind them of vomit. But porridge and pureed food do not have to look like vomit. The trick to pureeing vegetables is to either blend each vegetable on its own or similar colour tones together. As an example, blending spinach and carrots together results not in a cheerful orange, but a disgusting sewage green. Healthy persons and patients alike are not attracted to murky unappetising colours. A light yellow green is refreshing while a dark green instantly turns most people off. Conversely, blending a carrot, a tomato and a pumpkin would give you a reddish orange yellow. The intensity of the colour depends on the ratio of each ingredient added to the blend.

Our goal is to get the patient to look forward to meal time and to hopefully eat as much as possible. This is where presentation skills play a part. Very sick patients usually can’t eat very much. Using small jars e.g. recycled chicken essence jars and baby food jars, to store and serve bite-sized food portions is functional and very pretty to look at at the same time.

While Singapore’s government restructured hospitals may have to put in more effort to serve up dishes that excite and tempt the patients’ palate, private hospitals are already whipping up and garnishing meal servings in a more delightful manner.

 

breakfast-and-lunch-at-the-ward-in-gleneagles-hospital

Breakfast and lunch at the ward in Gleneagles Hospital

Everyone needs some motivation, coaxing and something to look forward to. Toss out all the chipped bowls and plates in your kitchen and invest in some beautiful claypots, crockery and cutlery that you can get affordably at $2-dollar shops such as Daiso, neighbourhood hardware shops or even at Ikea. You can buy a bowl at Ikea for just SGD0.90. Get hold of some colourful napkins, paper plates and party forks and spoons, and table mats. Use a different set every day, play Pretend or eat with just your hands. Colours, patterns, variety, citrus fruit and floral scents, light music and imagination can make the dining experience a treat to look forward to, as well as a memorable experience for the family.

Love is at the heart of all these efforts. So long as we remind ourselves that pleasant words are persuasive, caregivers should be gentle with not only the patient, but with themselves too. Tomorrow will glow brighter than Pumpkin and his friends when we continue to love and hope.

Caring for a stage 4 pancreatic cancer mother

I met KM for the first time shortly after Chinese New Year this year. I was at the National Cancer Centre (NCC) to keep her daughter composed and to help her and her mother make sense of what the oncologist was going to announce that morning. The clinic was bustling with middle aged patients and caregivers of different nationalities. All the seats were occupied. I kept myself busy by reading everyone’s jittery expressions while glancing intermittently at the bell above the door of the doctor’s room. KM sat right outside the doctor’s room. I stood by her daughter and tried to remain cheerful amidst the escalating tension. I was too shy to speak with her.

The wait was almost 2 hours. By the time the bell beeped, KM and I had already warmed up to each other. At first, we conversed in Chinese. Then, I discovered her native tongue was Cantonese. We never spoke in Chinese again. We talked about what she did for a living, her maiden family, and Cantonese soup recipes. We were comfortable with each other. KM had long black curls. She didn’t look 60. I was in touch with a few ladies who had pancreatic cancer. None of them survived much longer after their diagnosis. I really did not know how prepared KM was to understand the prognosis and how prepared her daughter was to accept that pancreatic cancer is critical.

We entered Dr C’s room readily. Dr C introduced herself, said KM’s condition was a late stage and that there were 2 suitable types of chemotherapy treatment drugs; one with an efficacy rate of 60% and the other with an efficacy rate of 40%. Dr C was straightforward throughout her delivery. In fact, her facial muscles hardly moved. I was a little taken aback. Most of the oncologists I have met have a more cheerful disposition, and are generally attentive to their patients’ body language. Nevertheless, Dr C was a good instructor. I liked her illustrations of what the treatment options available were, how each of them worked and what their potential side effects were. KM’s daughter looked to me for approval. At the same time, KM turned towards us and told us both to decide on the treatment option. Since the potential side effects for both types of drugs were almost the same, I felt it was more logical to go with the drug that would give KM a better chance. KM’s daughter nodded in agreement. All this while, KM did not look at all anxious or fretful. She did not even ask any questions. Instead, she kept smiling reassuringly. There was something about her voice and the way she spoke that reminded me of my maternal grandaunt. I felt responsible to take care of her and to make sure that she was comfortable. We left Dr C’s room to attend to all the necessary paper work, appointments and additional blood tests. We had spent almost 6 hours at NCC by the end of our first visit.

2016 is a rather depressing year for me. Besides KM, I have to keep alert for a few other patients. With full-time work commitments, it is impossible for me to be always physically available for every patient. I do my best to be there for those without kin, and those who cannot speak English. Because KM’s daughter was able to care for her, I did not accompany KM for her first few sessions of chemotherapy but kept in touch with both of them. I was well aware of all the side effects she underwent. The drug that was supposed to have a better efficacy did not work for KM. She suffered hair loss, insomnia, loss of appetite, weakness and body aches. The CT scan after the treatment also did not show improvement. It was decided that she should switch to the other drug. By God’s grace, the drug worked. After a few sessions, CT scans showed that the tumour had shrunk and the best news was KM did not experience any of the anticipated side effects. She was able to go about her daily exercise and domestic chores. I thought of her frequently and I suppose we had telepathy. She always sent me What’s App messages whenever I thought of her.

In August, KM’s daughter informed me that the drug did not seem to work any longer. The latest CT scan showed that the tumour was growing. She was asked to meet the trial drug team at NCC and it was best that I went along. I met KM for the second time a few days later. I had intentionally put on a new dress to meet her. I needed to feel my best before I could give her my best. Instead, as soon as our eyes locked, I started to suspect if I were the patient. KM was so beautiful. Her black locks had given way to a short shimmering crown of silver. Her complexion glowed in pink. The radiant beam she wore was so heartening, reassuring and enchanting. She was definitely the most stunning and elegant 60-year old Asian version of Meryl Streep I have ever come across. I was so delighted to see her. KM is a miracle.

Our consultation with the trial drug team did not sound promising even though the oncologists were friendlier and less grim. We discussed many options but all of them either required us to be placed on a waiting list or to be tested for a fit. We did not like the uncertainty. It was at this moment that decided to check with the oncologists if we could allow KM to take LutiMax® lozenges, which I had obtained from Lutimax Asia in Singapore. LutiMax® is used widely by patients with cancer, diabetes and neuro-conditions in the US and Europe. I had brought along the research findings on how its core ingredients helped pancreatic cancer. Now that I had seen how well KM appeared, I could not give up on her. If LutiMax® could help her, I felt compelled to do something. Thankfully, the medical team did not object to it since the core ingredients of LutiMax®, luteolin and rutin do not interact with her chemotherapy drugs. That evening after our consultation at NCC, KM grabbed me suddenly and hugged me. We took our first photograph together. That first hug stirred up a lot of emotions within me. Nobody has ever embraced me so spontaneously and firmly before. The more I think about it, the more I am convinced we needed it mutually. We needed each other. That evening, KM started taking 4 LutiMax® lozenges faithfully every 6 hours.

We managed to get a second and third opinion from oncologists from the private sector and other government restructured hospitals. We also checked with them if they had any objection to KM taking LutiMax® lozenges. None of them objected to it since luteolin and rutin are naturally occurring bioflavonoids that do not interfere with KM’s primary curative treatment. They were however more comfortable that KM take LutiMax® Pediatric Powder instead since it was a pure formula of luteolin and rutin. We heeded their advice and finally decided to transfer KM to Dr Y’s care at National University Hospital (NUH). Dr Y is a gentle man with a broad smile and a soothing voice. KM took to him instantly. KM was screened for a fit for immunotherapy but tests confirmed that she was not a suitable candidate. By then, she was off chemotherapy for almost a month. LutiMax® Pediatric Powder was the only medical food that she took staunchly every 6 hours. Dr Y decided to start KM on targeted chemotherapy which has a 10% efficacy rate. By end September, KM started her first course of the new drug.

A few hours after her first dose, KM broke out in rash all over her chest. Yet, she kept silent about it till the redness spread throughout her face by the end of the sixth day. It was a Thursday. She was feverish. Her eyes and her face were swollen by the time she was rushed to the emergency unit at NUH. She had ulcers all over her gums and in her throat. It was difficult to swallow. Dr Y was on leave. I emailed him and described the side effects and sequence of events that followed KM’s treatment as vividly as I could. He responded shortly and explained that the side effects were expected, and that if they were manageable, the treatment should be continued. KM’s daughter and I exchanged phone messages throughout that day. She was unable to take leave the next day. That night, I spoke to KM. Listening to her voice left me distraught. My heart nagged at me to take the following day off to visit KM at the hospital. I struggled because I had some urgent deadlines to meet.

The next morning, I muttered my prayer and surrendered all my burdens to God. The work could wait. I brewed a flask of barley water, filled up a Tupperware container with oats, went to the supermarket and bought bananas, cherry tomatoes, dragon fruit, organic baby oats, flax seed, raisins and soy milk before I went to the hospital. KM was still in the observation ward and the attending doctor and nurses were examining her. The swelling on KM’s face had subsided after the steroid injection and antihistamine dose. However, the ulcers in her mouth worsened. She had to remove her dentures. She devoured the barley I brought hastily. I spoke to the attending doctor that morning. She was sweet. She shared that her mother is going through cancer, that her mother is stubborn. She shared that she is open to alternative treatment options although most of her peers are not. I have enough experience interacting with specialists to agree with her. When hope with mainstream curative treatment diminishes, we need wisdom to choose among an ocean of alternative treatment options. What works for one person may not necessarily work for another. Making this decision involves time, conscientious effort and mental concentration to research and analyse findings. It demands critical thinking skills, rigour and courage to ask the right questions. More importantly, it requires a rational mind and astute decisiveness to say ‘no’ when we have to. It commands confidence, hope and stamina to move on to the next available option. Finally, what matters most is the patient’s willingness and eagerness to accept the option and cooperate with the caregiver. Both the patient and caregiver must be comfortable and receptive.

I spent Friday with KM attending to her needs. She sipped the warm barley. Lunch at the ward was rice, toufu, a bowl of hairy marrow soup and a cup of soymilk. KM did her best to eat. I requested for the doctors to prescribe Oracorte and Difflam Forte Anti-Inflammatory Throat Spray to soothe the ulcers. Both medication did not arrive till the following day. KM managed to nap while I kept her husband company. It was my first time meeting him. He thanked me profusely, talked to me about his work obligations, how tough it had been for him and KM to raise their three children, and how he felt the world collapse when he received news of KM’s condition. I felt his agony beneath his small dark muscular frame. We had lunch at the food court. I bought him a cup of Chinese tea. I imagined it cleansing his pent-up distress along with the grease from his vegetarian lunch. I needed to feel better.

That afternoon, KM had the soymilk I bought for tea. She managed to eat half the dragon fruit. I insisted that her husband finished the other half. Sacrificial love is key to braving the storms in life. Sharing that dragon fruit was a symbolism of their unity during this adversity. My ulterior motive was to help relieve KM of her constipation and to make sure she had some nutrition. That evening, dinner at the ward was made up of the same dishes served during lunch. KM did her best to eat again. Losing another kilogram meant that she was unable to continue with the prescribed treatment. I helped her to the shower and waited for visitors to arrive before I took my leave. I met KM’s sister and reported the day’s events to KM’s daughter.

By that evening, the initials ‘KM’ bore a new significance to me. More than a name. ‘KM’ means Kai Ma or godmother in Cantonese. I was affectionately introduced to all her visitors as Kai Lui, which means god-daughter in Cantonese. Over the next 7 days, KM and I bonded through the food I prepared for her. I am neither a food and nutrition expert nor a chef by training. Yet, cooking for KM seemed just the right thing to do during that week. The ulcers in her mouth were hurting so much she was barely consuming any of the hospital meals. She lost weight. Since she is vegetarian, I made her brown rice porridge with pumpkin, carrots and spinach. I also double boiled thinly sliced radish, carrots, pumpkin and red dates into a brew so that she could consume the mashed up ingredients besides drinking the soup. She missed eggs so I steamed her an egg with pumpkin, shitake mushrooms and a dash of light soy sauce. I delivered the dishes in thermos pots feverishly to her ward that late Sunday morning. She wolfed down the steamed egg voraciously. “Hou shik, hou shik (delicious in Cantonese),” she repeated while she slurped the warm porridge effortlessly despite the mouth sores. Poor thing. She had been starving since her admission. I was unable to visit her the day before. It was probably the most satisfying meal for her since the side effects erupted as it was for me since I learned how to cook. Nobody has ever relished my cooking the way she did. I was more determined to help her put on the weight she had lost.

As I bid her goodbye shortly after she finished her lunch, I saw her eyes glisten. She was going to tear. I had to leave. It was too emotional for me. On Monday morning, I got up early to double boil black bean soup before I left for work. I have to thank my helper for watching the fire like a hawk for the next twelve hours. That evening, I looked forward to rushing home to make KM steamed egg and Japanese white noodles for her dinner. I packed up all the food and sent it off to KM’s daughter at the MRT control station. Over the next few days, this routine continued. I did what I could to make her dishes different every day. Variety and colour could whet her appetite and mood. She had adzuki bean soup, alphabet macaroni, stir fried mixed vegetable toufu, beetroot and radish soup. It was tough on KM’s husband and daughter to visit her after work every day. One evening, I decided to nourish them with some steamed pumpkin brown rice as they were eating out almost every meal.

It’s been at least 3 weeks since KM got officially discharged. I accompanied her to visit Dr Y for her post hospitalisation review. She is scheduled to continue with a few more rounds of the targeted chemotherapy. We are told she will continue to experience the side effects, but now that we have all gained the experience of watching out for symptoms and caring for her, we are better prepared to help her cope with her pain and diet.

KM wants to see the world. Despite developing a fever after she took a dose to strengthen her immunity, and suffering similar vicious side effects, she was still determined to continue with her pre-booked trip to Korea with her husband and daughter. She spoke to me at the airport and reminded me not to work too late. That phone call made me cry.

I waited the whole week for her to return while keeping myself busy at work. I don’t know if KM is doing so well because of the chemotherapy, LutiMax® Pediatric Powder or simply because she is so positive and cheerful all the time. What matters to me is she is living joyfully and maximising each day she has to the fullest. I believe that God is in control and I am thankful that He has so faithfully kept her safe during her travel. KM called me the moment she touched down at Changi Airport. I am blessed to experience love and strength from a stranger whom I now fondly relate to as my Kai Ma. I am happy to be now part of Kai Ma’s family. I will continue to serve with love because love never fails.

Real People Stories

Before my children started their primary school education, they used to crawl into bed every night with me to ask me questions about my childhood. They asked the same questions every day and never grew tired of listening to the same description I gave. I loved the earnest gleam in their eyes, their pupils and ears focused on every detail I outlined. I could see them tracing every word released from my mouth into their vivid imagination. Then, one night, my younger son asked, “Can you tell us more real people stories and write them into a book?” He was so sincere and curious to know what people around us did every day and how life differed for each of them.

Inspired by his inquisitiveness and touched by his belief in me as a writer, I decided to pen Real People Stories. I have written so many chapters of the people in my life in the last 3 years. More recently, I have also decided to pen down my thoughts and emotions as I accompany critically ill patients for their consultation and treatment at the hospitals from my day job. It’s been painful to watch them undergo surgery, cancer treatment and sometimes get warded in high dependency or intensive care units. When life draws to a close, it will be a tragedy to realise that paper chase and the rat race for materialism are no more significant to nurturing meaningful relationships. I have learned so much about life just by being there for the patients. I am thankful every day that I have a home to return to, and family members who love me and communicate with me. Most of these patients I look after may belong to a family, but there is no communication or love between members.

Real People Stories are accounts of my observations and learning experiences. Just as they have humbled me, I hope that my readers will take time to reflect upon their lives too. It is important for us to always be mindful of what our purpose in life is every day. What matters is if we are truthfully grateful for our gift of life and if we make it our conscious effort to live each day as meaningfully as we can. Life begins and ends with love from the heart.

Sincerely Yours

I am Tank Full of Love.