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.

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