Mother's Battle on GBM

Losing It

2008-11-15T10:06:00.004+08:00

I had a rough night. And this morning, I lost my temper. I couldn't hold it any longer. I know should be patient when dealing with people, especially Mum but I couldn't hold myself from being upset. I got up very much earlier just so I can test Mum's blood glucose level before injecting her with insulin. Her blood sugar was high. 15.9. I asked Siti; grandma's maid if Mum had anything this morning. Mum lied. She had bread because she was hungry. I had specific instruction from Prof SP Chan to make sure she fast before injecting her with insulin. Out of anger, I think I spoke with an upset tone telling Mum from the next time onwards, I will wake up very early to make sure she is injected before she takes her breakfast.

In the kitchen, I prepared Mum's meal, alfafa sprouts with bread on olive oil spread. As I pull out every strand of the alfafa sprouts from the plastic container, I couldn't control my tears. I felt angry at myself. I felt angry that I am angry with Mum. I felt useless and bad. Siti noticed I was sniffling away trying to control myself from crying. She gingerly placed a box of tissues next to me. I told her to pass the bread to Mum and I walked quietly into the room. I let go. I cried. And I felt better but still feel bad. I am going to go out and apologise to Mum.

Drugs That Mum Takes

2008-10-05T23:33:00.011+08:00

Been hectic in the past fortnight. People around me got ill, and I wasn't feeling too well either. A spate of diarrhoea hit the city. Bro was getting all the gastric pains and stomach upset. When such happen, we always wonder why. Is it the water? An erratic diet?

Fortunately, Mum escaped all that. Doctor gave Mum a new dosage for the drugs he prescribed. She just completed her first course of radiotherapy and her Cyberknife treatment is scheduled from the week of October 6. There was a little confusion at Wijaya International Medical Centre last week as patients were informed of a later appointment date and then at short notice, they were told the next day to see the doctor within the same day after their radiotherapy/chemotherapy session which resulted in the inconvenience of waiting. One of them got mad and started grumbling all the way to the lift.

What impressed me most while at the hospital was the diligence demonstrated by Audrey, the resident pharmacist. Since Mum has to take different dosages for her steroid on different days and week, Audrey separated them into five courses in different packets to avoid confusion later.

For more than five weeks, she has been on dexamethasone; a potent steroid hormone which acts as an anti-inflammatory and immunosuppressant because radiotherapy could result in swelling on the affected area. According to Wikipedia, dexamethasone is used in the treatment of brain tumours to counteract the development of edema, which could eventually compress other brain structures. Dexamethasone is also given in cord compression where a tumor is compressing the spinal cord. And since this steroid will increase sensitivity to stomach acid which could lead to gastric and ulcer, Doctor prescribed Zantac, the commercial name of ranitidine which inhibits stomach acid production. To ensure that nausea is managed effectively, he also gave Mum some metoclopramide in the form of Primperan.

With so many drugs she has to take at a certain time, the insulin jabs which Bro helps with twice a day, almost always we have to take matters into hand personally to ensure that she doesn't forget.

Of Fish Head and Eye Ball

2008-09-17T23:43:00.009+08:00

Mum wanted to cook today. The whole time since she was diagnosed, we discouraged her from hassling with the pots and pans, or being too near to the fire. It is understandable that prior to this, she had control over what we eat and the kitchen was her playground. Noticing this point, I decided that I should let her cook at least once. Since last week, she had been looking for an ingredient which she couldn't point out due to her not-too-great memory so yesterday I brought her to a bigger Jusco supermarket in Midvalley Megamall and let her take her time to browse through and pick the items herself.

As it turned out, she wanted miso paste (味噌, みそ). The thick, dark miso paste is typically made of fermented soybeans, or barley and rice, with salt and kōjikin (麹菌, こうじきん) fungus. And the colour of the paste depends largely on the kind of kōjikin used. I didn't realise mum is that familiar with Japanese ingredients. And that was not all, she picked a salmon fish head as well. She said, "I'm going to cook this for you tomorrow". I'm not a fan of fish head but I nodded obligingly.

Even though Mum didn't prepare most of the dishes served for lunch today; dark soy sauce chicken and my favourite stir-fried pumpkin but she did cook one dish in particular, all by herself. Her first attempt with miso pan-fried salmon fish head. She was inspired by a cooking show she watched on TV and so she tried it out herself. It was pretty good. I didn't know salmon fish head could taste good. And strangely, the flesh in the salmon head is not the usual pinkish orange colour. Its texture and colour are just like what you find on chicken meat.

While tucking into one part of the salmon head, I discovered its huge eyeball which Mum asked me take. Never in my gastronomical history have I ever consumed a fish eyeball but Mum was persistent in asking me to eat it and so I did. Heard fish eyeballs could improve vision. Whether it's a myth or a fact, I took a bite and swallowed it in an instant. Not as bad as I imagined, but yeah, I ate it. Yay!

Mum's New Clothes

2008-09-08T08:13:00.012+08:00

I remember the last time I REALLY stepped into the women's section of a departmental store was with Mum in Hat Yai (หาดใหญ่), Thailand at least fifteen years ago. I was a kid, still dependent on tagging along with parents on their frequent trips to the southern part Thailand every year. I never particularly fancied the waiting and standing while the women in the family shopped, or being squeezed on the cheeks by those entrepreneurial and delightful Thai women peddling clothes in bazaars.

Last week, I braved the racks and rows of women apparels in search of Mum's clothes. For years Mum has not been getting new clothes for herself. As much as I can remember, she doesn't shop much for herself. I observed over time that she only bought children clothes for relatives' kids and snacks for us. To begin with, she is a very thrifty woman. She has been frugal about spending on and for herself, and over the years, just to make sure we have enough for school and make it through college. She wore mostly the same clothes.

"Why didn't I realise this sooner?"

It was this question which propelled me to the decision of getting her some new clothes. I always wondered what kind of gift I should get her on her birthday. Usually flowers, cards and cash. It never crossed my mind about getting her clothes. So I was set on this idea and made my way to the ladies department. Picked her two shirts and one shorts based solely on my instincts, and judging from the the size she wears; the day before I went through her clothes to have a general idea of her size and the sort of cutting suits her body frame.

As I laid the clothes at the cashier counter, the two lady cashiers looked at me and smiled teasingly. I smiled back bashfully and uttered in Malay, "Untuk ibu saya". In English they mean, "For my mum".

Mum tried on the clothes and I was relieved they fit her. Most important of all, she is comfortable wearing them. I was worried my choices were too out-of-style for her. I asked her which one she likes most.

"I like them all..."

I didn't see that coming. I was expecting her to say, "I like the red one". Or of the other. "I like them all" sounded abrupt but hit me right through endearingly. That's what we would hear from a mother. That goes to say, she really appreciates everything we are doing for her, and whatever we have done so far, she is deeply touched by it.

Cherry Blossoms?

2008-08-28T23:05:00.010+08:00

On the way back to Mum's, I passed by that place again; an orphanage nestled near the mosque within the vicinity of Old Klang Road, along Jalan Puchong. The sign reads, "Persatuan Pure Life", which translates to Pure Life Association in English. A day before, I mentioned it to Bro and Mum about the beautiful blossoms that resemble the sakura (櫻, さくら), also known as cherry blossoms. And Bro ignorantly thought they were for real.

On closer look, they are flowers of another kind. I remember a couple of years ago, Straits Times featured on this particular species of flower-bearing tree. Could not recall the name. I intend to bring Mum and Bro here to see these for themselves. One can't help but feel wonderful at such rare sight. The front office lady, Miss Devi who happened to pass by explained to me that they flower towards the end of August, every year. Some people would come with foldable chairs to sit and just enjoy their beauty.

Insulin Shots and a New Haircut

2008-08-27T19:05:00.004+08:00

It was Mum's third appointment with Professor SP Chan. We made sure we reach UM Specialist Centre before 4PM. By then there were already quite a number of people waiting and we were the seventh on the queue. A long heavy rain followed as we waited for Professor to arrive. While at that, I took the opportunity to take some pictures of Mum, and Bro; with her new haircut which looks refreshing! It was funny seeing Bro adjusting her hair, tidying it up for the photo.

A couple of days earlier, her doctor at Wijaya International Medical Centre advised her to shave her hair or have it cut short as the radiotherapy sessions will make her scalp look patchy. Aunt Amelia wanted to bring Mum to the hair saloon but Mum wanted to keep it simple so aunt cut it for her with a pair of tailoring scissors.

It wasn't long after Professor arrived at her clinic, Mum's name was called and we hurried in, taking out Mum's blood sugar logbook to show her. Professor was not too happy with the effectiveness of Gliclazide as she's worried about the steroids Mum are taking this week and the next. To be on the safer side, she decided to get Mum on an insulin shot routine. She's to go on a shot of 18 units of NovoMix Insulin Aspart during breakfast, with an additional 4 units if her blood sugar level is above 15. And during dinner, 6 units of NovoRapid Insulin Aspart with an additional 2 units if her blood sugar level goes past 15.

Radiotherapy

2008-08-26T23:16:00.008+08:00

Was up early this morning. Kept telling myself I have to reach Mum's place by 8.30AM that I forgotten all about breakfast. Thankfully Bro brought down some mooncakes for me. They knew I have the tendency to just forget.

It is Mum's second day of radiotherapy treatment. She is taking it well so far except for the unpleasant vomiting she had to bear with last night. On the first day, we were allowed to be in the control room with the radiologist and operators explaining to us briefly on the processes involved in Mum's treatment. They are relatively friendly and I was able to snap a picture of one CCTV screen of Mum lying down on the LINAC (Linear Accelerator) during the radiotherapy session after getting the permission from one of the operators. Unfortunately, other areas in the control room are not allowed to be on film.

Mum will be on radiotherapy from Mondays to Fridays, for five weeks. That's twenty five sessions in total before she goes for the Cyberknife boost. Her doctor calls this a conformal radiotherapy, which is most useful for treatment on tumours close to critical organs as it helps to avoid radiation damage to healthy body tissues and organs.

Motherly Doctor

2008-08-22T22:26:00.016+08:00

"Bilik Pemeriksaan 14"
That's what the sign says in Malay for Examination Room 14. It's the very same room Professor SP Chan, Mum's endocrinologist, has been using for her consultations for as long as I remember. The first time we came while waiting to see another doctor, when I saw the same sign on door number fourteen, I thought she was a man, because her initials sounded so resolutely manly and regal to a certain extent. Even Brother thought so.

It was only a week ago, in my moment of distress worrying about Mum's diabetic condition, I called the hospital to ask for Professor. I was expecting a male voice to answer but an older woman's voice resonated on the other side of the line. I tried to set an appointment with her, and even though her schedule was already full, she decided to squeeze Mum into her timetable. I gave her an insight of Mum's condition and by then I could sense a little compassion melting down her cold, hard tone.

On Monday, we saw Professor for the first time. Concerned about Mum's diabetic condition, she instructed us in detail on what to do in order to control mum's sugar level, and warned us that steroid intake which her radiotherapist prescribed would increase her blood sugar level. She gave us a chart where we recorded Mum's sugar level over the next four days till today, Mum's second appointment with her. To normalise insulin secretion in Mum's body, Professor prescribed Gliclazide 30mg, two tablets a day, to be taken for a week. Today's appointment was arranged specifically for Mum and another patient as she doesn't see her patients on Fridays. We're grateful for that kind of diligence demonstrated by Professor.

When we came out of the room, I reiterated my question to Bro, "She's NICE, isn't she?"

"She's like a caring mother to her child!" he exclaimed.

This is the kind of doctor we need these days. Caring, loving and dedicated.

Recipe for Recovery

2008-08-21T22:20:00.010+08:00

"Mildly sweet and nutty flavour."

That's the taste Mum has been accustomed to over the past one and a half months every single day. The recipe of the soup she has been drinking was discovered by an aunt who read in the papers about how a Taiwanese woman recovered from brain cancer after seeking alternative medicine from Japan. The woman's husband left her upon realising she has the condition. She prevailed and persevered in spite of the odds against her. She won. And I intend to use that success story of hers as an inspiration for me, for us, towards mum's recovery.

The ingredients can easily be sourced from local supermarkets. Burdock root, or gobō in Japanese [牛蒡, ごぼう], for instance, is more commonly used as a vegetable in Japan, Korea, Italy and Portugal. This crisp root has a sweet and mildly pungent taste, and the Japanese love to use it as an appetiser. That explains what Mum described. First chopped into half, from the original size it's packaged, it is soaked in a tub of water for half an hour to remove excess dirt. Then scrub it with a sponge to ensure that its skin is completely clean. The root is then further cut into between three to four inches.

The Chinese radish, or more lovingly called lobak by locals in Malaysia is a popular ingredient in Chinese soups. It's also called daikon [大根, だいこん] by the Japanese; literally mean large root, is another key ingredient in the soup Mum has to drink. Like the burdock root, it's cut into the same size together with one carrot and boiled with Shiitake mushrooms for two hours before serving. Preferably, pick the Chinese radish which still comes with its leaves and shoots, which are used in the soup as well.

Exploring Option Three

2008-08-11T23:21:00.008+08:00

The journey to Singapore was relatively smooth. Except maybe I didn't quite have the appetite to eat anything, even though the coach steward served muffins, tuna sandwich and chocolate cake. The Filipino man sleeping across me in the lounge had his leg sticking out in my direction, not bothered with his daughter, and his wife who was seated next to me. The scenery along the way would be refreshing for city dwellers; expressway lined with rows of oil palm or rubber trees.

In less than five hours, the bus arrived at the Singapore Customs and Immigration checkpoint through the Tuas Second Link. If not for the heavy human traffic (mostly Chinese nationals), I think I would have reached the city centre sooner. Since the appointment with the neurologist at Mount E Hospital is at 12.15PM, there was still a lot of time but I tried my luck by going there earlier and see if I could fit in a preceding slot.

The wait for the neurologist took longer than I expected. At his clinic, a couple of other patients were waiting. What drew my attention were rows of awards hung on the wall and the many souvenirs he received in the course of his service. "Fancy and flashy." That came to my mind the whole time I was there. The meeting with the doctor was brief and his assistant explained to me in detail the kinds of treatment Mum should consider. They are definitely very pricey but I was gonna hold that decision until I have discussed with my relatives.

The journey home stirred a lot of thoughts in my head. I was thinking about the many questions I would have to answer back in KL. The ring tone on my phone turned soundtrack in the whole five hours I was in the bus. Thankfully, and surprisingly, First Coach buses are upgraded with a mini TV set on each seat so passengers get to enjoy movies and music by picking from the list on the panel - a private entertainment. By 9PM, the bus halted at Bangsar LRT station. And I didn't miss much of the opening ceremony of Beijing Olympics!

08.08.08: Daytrip Express

2008-08-11T17:33:00.014+08:00

The Friday we have been waiting for finally came, oblivious to the fact that I could miss the live broadcast of the Beijing Olympics opening show at 8.30PM. It didn't matter to me as I wanted to get the decisions done with, having possible treatment options for mum laid out clearly to be considered. The night before, I called and booked a taxi, scheduled to arrive at my place at 4.45AM, just so I would reach the departure location; Côrus Hotel, Kuala Lumpur before 6AM.

The taxi driver who waited downstairs is his mid-twenties, a pleasantly friendly Indian man who chatted with me all the way to the city centre. When I needed peace and quiet, he got the idea and just concentrated on the driving. A relatively smooth ride all the way there, with hardly any traffic, left me indulging deep in my own private thoughts.

I was greeted with a yellow and grey coloured Aeroline bus when I arrived at the hotel with more than enough time to hop on the bus. Reached for the ticket to be processed by the Aeroline receptionist. It wasn't long before the passengers were told to board on the bus. I chose the seat in the lounge as I figured it'd be easier for me to get out of the bus when I arrive in Singapore. A Filipino family of three was seated next to me. I was half expecting to have the whole lounge to myself so I can rest peacefully without anyone babbling away. Fortunately, they slept all the way to border. So did I.

Option Number Three

2008-08-09T17:25:00.010+08:00

I received an important call from Aunt Amelia at half past eleven on Tuesday night, right after mum and I came back from Singapore. She wanted to find out how it went with the two oncologists we saw in the last two days. Actually we decided to skip the appointment with a neurologist in the afternoon because everyone was already tired and mum was concerned with the costs arising from these consultations so collectively; Aunt Tua Ee, mum and I decided to forgo the appointment.

Aunt Amelia and her husband explained the necessity of seeking professional advice from a brain specialist, at least, before deciding on what to do next. It dawned on me the next day about the relevance of their advice and that it's perfectly harmless to seek for another opinion even though it will cost a bit more. I quickly made some calls to arrange for my transportation and to arrange for a 12.15PM appointment on Friday with the neurologist from Mount Elizabeth Medical Centre. The coach service that I usually take is Aeroline. To ensure that I arrive in Singapore on time, I got the 6AM coach but their SG-KL route for the afternoon have just limited seats and only the 1.30PM coach was available. 1.30PM is just too tight for the doctor's appointment so I decided to seek other options.

Called up First Coach, a coach service I used to take in the past. A male voice answered the phone. He told me 2.30PM, 4.30PM, and 6.30PM coaches are still available.

I thought to myself, "2.30PM sounds possible".

And with this arrangement, I would be able to optimise my time in Singapore and still make it back to KL early. Told the man on the phone if I could reserve a seat and collect it in a while. Left my name and phone number with him and made my way to their Bangsar office to get the ticket. So all the necessary arrangements were made and I told my aunts about it. Mum is not aware of this because I didn't want her to worry about me. She tends to be very concerned with my work and how all these will affect me. To let her worry is the last thing I want her to be occupied with.

Discovering GBM

2008-08-07T17:36:00.010+08:00

"Why is this happening to me?"

"What did I do to deserve this?"

These two questions which Mum uttered when she first came to realise her condition, till this day, still ring in my head every now and then. I remember vividly on that Monday morning, July 19, 2008, right after the neurologist explained to us on the outcome of the biopsy, with dad in presence, we went into a state of shock. I was stunned. Dad probably did not have a clue just yet what Prof. Vicky said in English. The term he used, GBM or Glioblastoma multiforme, sounded foreign. His dry humour didn't hit our turf.

"Look at this way, at least it's going to be painless, and you won't feel much."

How could that be funny? I know Professor was trying to make it sound positive but we certainly were not amused. Words like "five months", I bet Dad can understand. By then, things started to make more sense and we began to see the reality of the whole situation. I could not read what was in Mum's head. But she was clearly deep in her thoughts. And I tried really hard keeping her mind off by telling her about work and talking fondly about how surprisingly friendly the nurses were there.

At the payment counter, I insisted on paying for the doctor's consultation fees which Mum persistently pressed that she is responsible for. I told her, "Mum, I'm your son. It's time I take care of you. Don't worry about this. Let me handle it." She was worried about me, about my financial health. Just a week ago, I paid the remaining balance of her hospitalisation fees and other clinical charges which run in four figures. That was the start to a series of modern day medical costs cancer patients would have to bear. It was the least of my concern as I just want Mum to be well again. I will do whatever it takes to bring her for treatments and consult with specialists as long as they are confident of healing her.