Night before last night

05052012.0122

Should I be sad? Should I be mourning? Should I face the facts and allow my mood to sink?

Am I lying to myself by being hopeful? Am I fooling the world by not thinking too much about the doctor's words the day mum checked out of hospital?

"It is in the final stages (末期)..." was the only thing the doctor said. He did not know what to say when brother asked for a time. I personally find it somewhat distasteful. As if one could predict when or how or where death, or anything in life, will happen! And what does it matter really? So people could be nicer and do better if someone does not have much longer left? So you could start living more and doing more with your life if you know time is limited?

The doctor was kind to sit down with us for almost half an hour. He drew a picture diagram of mum's inside, and better than before I now can visualise what they did in terms of the surgery and what is causing the jaundice.

I know much of this already, so perhaps that's the reason why I just sat there and let the words wash over me. I felt like I was not in the room, like I was just a bystander, as brother asked the questions and the doctor answered and drew his diagram...

There is a large lump on the duodenum. It is causing food to be trapped in the stomach. They connected a lining of the small intestines to the stomach wall, so that at least some food can leave somewhat naturally down the intestines and be absorbed. The lump is growing larger. It has compressed against the wall of the bile duct, suppressing the flow of bile which normally enters the duodenum. Jaundice is caused when bile, a poisonous substance if not excreted, collects in the body, and it causes the body to turn yellow and causes the liver to slowly lose its functions. Hence mum's continuing tiredness and still yellowish skin tone.

"I discussed with other doctors, and the duodenum is no longer operable." This was contrary to what I was told before, when I was given that glimmer of hope. Hope mixed with anxiety, for back then I was already told it would be a major operation, and I dreaded mum having to face another long stint at the hospital and having to walk on the long road to recovery again... Now, the lump has grown too large, and an operation to remove the duodenum and reconnect the "tubing" in that region ( which involves cutting out a piece of the pancreas, rewiring the biliary tree and readjusting the stomach and intestines even more) is simply too much work and too risky. It's not worth the risk.

"We've done the best we could so your mother can eat. She may still throw up a bit, as some food will still collect in the stomach and not go down the reroute, but at the very least she can eat and drink like before."

As for the bile duct, they installed a tube that is longer and thicker to direct the flow of bile down to the unblocked part of the intestines. For now, it seems to work well, as mum's jaundice level has come down (but still is very high...), but at least the bile is channeled as intended and leaving the body. There is still an open wound and a tube coming out of it, and mum has to have the tube in her for a month or two. The wound has to be cleansed and addressed of every day. Any sign of her skin yellowing more or any sign of fever, she must immediately check into the hospital, for it may be an infection of the wound.

"She can go home and rest and eat. It's important that she eats well and gain back her strength," the doctor reminded us.

Brother is scared, he told me. He's scared of what may happen, and scares of mum's condition worsening. I reassured him in the best way I could. Though, admittedly, I am of course also scared.

"It doesn't matter what will happen in the future, don't think too much about things. They said three years ago mum doesn't have long. Even if something happens tomorrow, or next week, you're doing your best, and you will not be alone. You've got your wife, your kid, and I'll be back too." (momentarily, I must admit, there was a rise in jealousy and sense of longing, for I have none of the important, valuable sources of comfort and support I just mentioned.)

Whatever happens, I am here. I will be here to support you, to support and comfort mum till the very end, I heard myself saying in my head. "You just spend more time with mum, touch her, talk to her, make her feel comfortable and assured. There's nothing more important. There's nothing else we can do but those things."

Brother was silent, but I know he heard me, because I've said the same thing to him several times. And I strongly believe deep down, he also wants to play a role, but he just does not know how or where to start. And I've been also telling mum to give him (and his wife) a chance, not to judge too soon, not to have any preconceptions based on events and unhappiness in the past, but to let them demonstrate what they can do, to let them have their chance at being filial children.

I believe strongly that this is all part of "Operation Eternal Happiness", an effort from all sides to get together and make beautiful memories together to keep, and to keep for life, and to keep even after death. The ways I've seen my brother and sister-in-law bond an interact with mum over the past two days have been very promising. And my nephew's cute little face and multitude of expressions and sweet little bouts of giggles is a wonderful bonus to add to lightening mum's discomforts and adding to her impression that life has been wonderful, and that life continues to be worth all the hardship and pain...

Fart

Mum is snoring again. I woke up several times, at one, at two, at three thirty, and saw her lying there twist and turn and occasionally groan. Time to get up, I told her. "It doesn't help if you can't sleep and just lie there!"

She did get four hours or so of sleep after the nurse gave her this liquid sleeping aid. "It'll knock you off, as it goes right to her central vein." sure enough, when it was administered at eleven, within minutes of lying down, she was snoring. Until she woke up and couldn't sleep at three something.

I got her up, took her on a walk around the ward. The night nurse is an energetic young girl from the south, so very warm and very friendly, and it's always a delight to see her, even at close to four in the morning.

And then mum farted.

That deserves a sentence and mention on its own. A silent (but deadly?) fart. The fart we have been anticipating since the surgery. The fart of farts to overshadow all farts. The fart that will hopefully usher in newer and bigger farts! A fart after any major surgery is a sign that the body is recovering, and that you can eat again. And especially with this surgery, meant to correct the internal plumbing system and ensure food can go down, the fart is very important and meaningful. It could very well mean mum could be drinking and eating, and no longer vomit as she has been doing for over a month. Further sign of the plumbing working better is that there is more pee being collected in the urinary pouch connected to her leg. I know, because I'm responsible for emptying it regularly and for measuring the amount. And just now I emptied some 700cc of urine, lighter than anything I've seen over the past few days. Again, a good sign!

Perhaps all this talk of farting and collecting urine is sick. But to me, it's all just part of natural bodily functions. And I'm so glad mum are getting them for they signal a return to being "normal" again!

Critical

Mum has been in and out of sleep ever since she left the recovery room yesterday afternoon. Except for a brief few minutes when she sat up on the edge of the bed to cough, she's been in bed for three days. The morphine drips to reduce her pain also induces sleep, and in the brief moments when she's awake you could she her eye lids are extremely heavy and threatening to close at any time.

The first 72 hours after surgery is critical and the nurse comes ins every hour to check her vital signs and watch out for signs of fever.

So far, she's been alright, with just a higher than normal body temperature, and she's still expelling a lot of fluids through the tube leading from her stomach. The doctors have increased her dosage of IV drips and added more nutritious formulas, but over the long run, if she cannot get up and move around, her limbs will get bloated...

Back in Room 1

"Rest more," I said, "It's finished now..." I meant the torturous waiting, the unknown and the anxieties associated with a risky operation. It's all finished now, as far as now is concerned.

I don't know the outcome of the surgery, I don't know whether she is able to eat again, I don't know how bad the situation is inside. But all that news can wait. At least mum is conscious, at least mum is still clear minded, and she can still move and speak, though with difficulty due to the pain. But it's all finished (for?) now.

"It's been hard on you", mum said. Her eyelids were heavy, her face was tired looking, but there was a hint of renewed hope. Hope we've not had or felt in a long time.

I stroked her leg gently and massaged her fingers. "No, it wasn't... It has been much harder for you".

Day eight

05012012
7.37

Dream... Why am I so tormented by dreams and thoughts? I am already so physically exhausted, and yet when I lie down to sleep, dreams plague my mind...

A myriad of images and random people in my life... With my brother on a bus heading back to Taipei from somewhere, the landscape outside seemed barren an deserted... With my ex and two other friend's (faceless, not recognisable...) and checking into a youth hostel. The mood was so tense, and I was made to feel like I'd done something terribly wrong... I was made to feel so guilty, even though it was (whatever it was) not my fault...

I wake up, and it is already morning. Half past seven, the hospital ward is waking up, people are moving about in the corridor, the cleaner is here to pick up rubbish... I open my eyes, realise it was a a dream, and take a few moments to allow the place where I am to sink in...

I am in hospital still, sleeping next to mum on a tiny bed/chair, and my back is aching, my head is hurting. I lift my her, and see mum smile at me, softly tell me: "Thank you for being here for me..."

Those words fill me with warmth, with hope, with gratitude that my dear, brave mother is here to fight and live for another moment, another day.

And how fortunate I am, despite the aches, the discomfort and at times irritation of having to take care of not only her wellbeing and health but also care for my own health and wellbeing, I am with her, and she is with me still...

18.37
Day two of mum rehabilitation. There is a class in the morning, aimed at training the strength of her arms and legs and basic coordination. In the afternoon, from two thirty till around three thirty, four o'clock, there are exercises to help her stabilise her walking, train her leg muscles and general endurance.

It is not easy, as mum is still a bit wobbly and unstable when she walks. She sighed and told me today how quickly from one day to the next she could lose so much of her ability to walk. But I encouraged her, at other people's expense, yes, and told her that her condition is much better than others... Those who are completely wheelchair-bound, those who have lost almost all mobility of their legs and arms and hands... Those who must endure so much pain just trying to sit up straight, let alone stand or walk...

One exercise involves mum using chopsticks to pick up marbles and place them from one bowl to another. Another exercise involves mum using her foot to shift beads from one side of what looks like a child's for learning how to count.

The physiotherapists who instruct mum are amazed by her progress and ability to do many of the exercises with speed and accuracy. I can see mum struggles and strives hard, I can see it from the beads of sweat on her forehead, from the way she pants and gets out of breath. Mum is really trying, trying very hard to walk and stand steady again. As my aunt told me, she is strong, she is doing it so that we, the children, can see her progress and recover quickly and soon feel that it is alright to leave her and go do what we have to do. My aunt tells me, deep down mum feels responsible and guilty to have to become dependent on me, and she would like to quickly recover so I can go back to my life. And I suspect, mum is striving hard, pushing herself so that when she sees her grandson for the first time, can garner strength to hold him, rock him in her arms...

It is amazing what mum can do, what mum can set herself to do within such a short period of time... Her courage, her strength, her determination to get better, to not be beaten is admirable. And I am so proud, so very touched that she is my mother, and that I am her son...

Day six

aan mij

03012012
9.50

We were woken up by the intercom hanging over the bed at around a quarter to eight. "Time for a CT scan, someone will be over to pick you up."

Within minutes, an assistant came and we rolled the bed to the emergency ward. I waited outside as mum, strapped in, entered the massive machine.

Within half an hour, one of the surgeons came and said the results of the scan were ready. He took me to the nurse station, and we sat down by a computer screen. He showed me a picture of "before", and clearly visible was  dark mass that had completely surrounded a section of the spine. The picture "after" shows an empty space where section C7 of the spine was.  The surgery removed that part completely, as the tumour had eaten the bone away and was encroaching on her nerves, hence her constant pain and sores. With the rotten spinal column taken out, on the screen I could see white objects connected to the sections immediately above and below section C7.

"They're titanium nails and supports. I can't say a hundred percent they will hold, but I can say with 95% certainty that the support will hold up her spine."

The problem with Section C7 has been removed, but the surgeons discovered a small lump in section C8. It also has to be dealt with soon, otherwise it will grow and cause sores and pains like before.

The surgeons who operated on mum will discuss with mum's main physicians what further steps to take. The surgery, though  it was successful, only managed to remove part of mum's tumour. There are other places in her body which require treatment, and those have to be done after mum recovers from the surgery. The cancer is spreading, and that is a fact. At this point you can no longer fully take all the cancerous cella away. You can just try to prevent it spreading too quickly.

One such possible treatment is a new type of radiotherapy known as "cyber knife". It uses a vert concentrated dose of radiation to target a particular area, and causes less extensive cellular damage compared to the traditional radiotherapy treatment like the one mum underwent back in May/June. But that treatment is only available at Wangfang Hospital, which is on the south of the city, at least 40 minutes away by metro.

I was numb for a while after listening to what the doctor had to say. Of course, I'm happy mum's surgery went well, and that she has remarkably made a speedy recovery. Even the nurse was surprised. She had two operations, at the front and back of her neck, and yet within two days she could sit up straight, within three days she could stand and use a wheelchair, and within five days mum could slowly, slowly walk and use the washroom independently. That's amazing progress, and the doctor said she'd be discharged and transferred to the rehabilitation centre later today-- four days earlier than anticipated...

Mum had such a smile on her face, but I knew something she does not know. I dare not tell her, just not yet. Mum needs to enjoy the triumph and elation after having faced such a life threatening operation. I cannot dampen her mood by dropping news that she will need to undergo more treatment. Even for me, just hearing about more treatment is sickening. Imagine what it would feel like for her...?

Keep on smiling, mum... The smile will carry you and half heal you. At least for now...

11.30
I am often amazed by the efficiency in this country. Within an hour or so after the doctor came and said mum was stable enough to leave ward 173, the neurology ward, the nurse came by and said they've found a bed at the rehabilitation centre down the road. "Pack your things, the ambulance will be waiting!"

Together with my auntie and my cousin, we opened the shelves and drawers assigned to bed 29, mum's bed. Over the span of a week of so, we managed to accumulate so much stuff. I'm guilty of bringing or buying much if it, mostly products to give more more comfort and give her a boost of nutrition. Three pillows, various towels, four cans of protein supplements (protein helps wounds heal, as much of the body is made up of protein...), bottles of lotions and potions and personal hygiene  products (including edible, organic mouthwash and toothpaste!), bottles of tea and refreshments (for "fans" (visitors) who pop by, sometimes unannounced...). And then there are pictures and a painting, and my mascot space monkey, with his collection of notes of encouragement, which needed to be packed.

In the end, we had a suitcase full of stuff, a backpack, and a three- storeyed trolley to haul to the new ward. Luckily, especially could go inside the ambulance, which had a lifting platform wheelchair users.

The new ward is indeed much newer, located in the eastern part of the hopital complex. I had been there before, for it is the same place where mum has her appointments with the renowned neurosurgeon. In fact, her room us located two, three steps from the Office of the Head of Neurology,his office.

Ward 26 is quieter, brighter and modernly furnished. There are even pots of beautiful purple "Butterfly" orchids to decorate the hallway. The layout of the room is more or less the same: a bed and mattress that can be adjusted at three different places, a table on wheels, a cabinet and a bedside table. It's two to a room, and the lady in the next bed seems nice and quiet. The tv is a flatscreen, and is connected to camel, thus with a choice of around a hundred channels. Even the washroom inside the room is bigger, with supports next to the sink and toilet, and a special chair to allow patients with limited mobility to better shower themselves.

Mum was delighted at the change, and het bed is right next to a big window with a view of the  on-site tennis court. Her smile reveals the confidence and strength with which she is facing this entire ordeal, and that is beautiful to see...

22.24

It's relatively quieter and cleaner here at the rehabilitation centre. Mum is already asleep, and I'm ready to retire too after another long day.

Though we have relocated to a nicer, more modern ward, my thoughts go out to the middle aged lady next who shared mum's room in the neurology ward.

She is more a less in a vegetative state after what I heard was a brain surgery to remove a tumour. She has been in this hospital for over a month now, after being moved from one hospital to another. Her husband is the one who takes care of her much of the time, and in the evenings and weekends the children would visit. Over the weekend, the daughter takes over, and it was with her that I admired the fireworks at midnight new years day.

I asked my cousin, who is a trained nurse. There is really not much that can be done, except to make sure her condition does not get worse, and make sure she is comfortable and living with dignity, meaning being fed and cleaned up regularly.  When we were packing to transfer to the rehab centre, the husband came by and said bitterly that it must be because we "have the ability to"-- a comment implying that we either have connections or bribes someone to quickly transfer mum away. But truth is, mum is being transferred because her condition is stable enough to start the next step after surgery, which is learning to walk and so daily activities. Whereas the lady simply cannot get any better, and cannot possibly be transferred to another ward, unless a miracle happens.

I smile at her whenever I see her, but she simply looks blankly into emptiness. She mumbles sometimes, but her words are confused and do not always make sense. She often asks where she is, for she does not seem to understand she is in the hospital. The nurses come every morning to wake her up. They do everything to keep her awake, including pinch her, call her name loudly again and again, because otherwise she's awake at night and makes a lot of noise. But most of the time she just sleeps and sleeps, even when they put her in a wheelchair and roll her out she manages to dose off...

The poor lady is incontinent and cannot control her bodily functions so must wear adult diapers. Whenever the diapers are changed, the stench is nauseating and fills the entire room. The husband often gets frustrated at her, shouts at her, scolds her, sometimes even slaps her, which is unbearable, especially as they are just a few metres away and separated by a thin curtain. "You dirty swine," he once called her, "You only eat and shit!" That was cruel to hear, but I don't think the lady could understand, could hurt.
I can imagine his frustration, I can see the source of his anger. Imagine having to spend almost twenty four hours a day next to someone who cannot do anything at all, who is completely reliant on you, whom you must feed and wipe, who is only half awake mug of the time... I apologised to my mum in advance and told her if ever I am that rude to her, if ever I get angry at her and slap her, she should slap me back... Hard! Because nobody deserves and nobody should have to tolerate  such treatment...

I  feel so much pity and compassion for the lady. She must have been a capable and kind lady before, she looked like one on the picture of her medical file, which is displayed on the screen whenever the nurses rolls in the mobile nurse's station to check up on her. She has at least two children, who are working in something business related.

A once able and hardworking lady, I would imagine, now confined to the walls of the hospital and  dependent on others to take care of her most basic and human needs. Where is the dignity is living like this? What is the meaning of being kept alive day after day after day when you are really just a weak, semi-conscious mind confined to a much disabled body? Does she realise what she has become? Does she feel hurt and remorse and is she full of regret and bitterness at what life and fate has given her?

I bid her farewell, and I bid the husband farewell. I can only imagine how difficult it is for him to watch and have to experience his wife deteriorate like this into a half-conscious big baby who needs diaper changing and being fed. I can only imagine, perhaps deep down, the lady must be crying and feeling so trapped in her body, if she can feel and still have a semblance of consciousness.

Though I am here in the relative comfort of the neurology centre, I cannot forget that lady's face, I cannot forgot the harsh words of te husband, I cannot forget the stench and the wails at night...

Day five

02012012
11.35

I feel faint and light headed. The poor quality sleep and almost constant work is slowly taking its toll. And it's only the fifth day...

Mum really cannot do much by herself and requires almost constant assistance. I can see she is frustrated and quiet. I ask her what she is thinking, and she says she let's her mind go blank. If that is  true, that is good. If not, I'm worried that she lies there and often has thoughts of regret and frustration, thoughts of anger and helplessness proliferating and disturbing her mind. The last two nights she has been sleeping badly, if at all. And she says she is besieged by dreams...

I can only offer her my body, my time, my care, my love... Nothing else. I can only wish her all the best and a speedy recovery, and nothing else more...

Day four

Day four
01012012

15.44

A big day today, as mum could eat solid foods again. Her first younger sister, who lives in the south, expedited some fresh fish last night and it arrived this morning, and my auntie (mum's second younger sister) made fresh soup out of it. This fish, the "seven star bass" (because on its head, there are seven dots that look like stars), is reputed to have healing abilities, and best for people who have just come out surgery on account of the fish's high protein content.  I was so pleased when she drank two bowls of fish soup, a bit of rice and vegetables, for the nurse did say that eating solid foods will do her much good and restore her energy levels.

Despite attempts to keep "fans" (eager visitors) at bay, mim's cousin came by, and so did her youngest brother (my uncle, whose family is in Vancouver), and the wife of mum's second brother. So almost all morning she was occupied, which in a way is good, as other than listening to classical music and looking at random pictures on my screensaver, I was out of ideas (for now...) how I could entertain her. But I also feared, especially as it's only the fourth day after the surgery, that having too many visitors may be too strenuous for her.

In the afternoon, after much goading, my uncle and I managed to sit her in a wheelchair and take her for a spin. I chose a fancy wheelchair, with suspensions, a seat belt and even the ability to recline, and out of the ward we went. Just a little walk, lasting around half an hour or so, but it was mum's first time out of the ward (except for yesterday when she went for an X-ray scan...) since she as admitted on almost a week ago. She looked happy, and said it felt good to breathe fresh air, especially as the air circulation is limited inside the room she shares with another patient. We were all surprised that mum could sit up for over half an hour, and we need to do this again and again so she gets used to the next brace and holding her head up straight.

Mum also had her first experience using the "mobile toilet" (a chair on wheels with a large hole where the seat is). She needs assistance sitting up and standing up, but other than that her feet are strong and stable enough for her to take little steps and for her to move about a little.

Little steps, everyday more, on the long road to recovery...

19.32

Something occurred to me today.

I was supposed to help a lady visit the doctors as part of my  volunteering I began recently on the 28th of December. Instead, I went into hospital to see my mum at around the same time I was scheduled to meet my patient. instead of helping a stranger and aiding her with her visit, maybe even holding her while she walked, I am doing that for mum.

Both experiences bring me much joy and fulfilment, but being able to help mum and make mum feel safe and comfortable of course gives me so much more...


23.47

I was half awake, half asleep, drifting in that dream-like state of consciousness.

"Weiwei... Weiwei..."

Was I dreaming? No, I opened my eyes and really did hear my name.  Mum's voice has gotten very weak after the surgery, and it'll take a few weeks for her to regain her voice again.

She needed to go to the washroom, urgently. I rushed to get the bedpan, for there was no time for her to get up and use the "mobile toilet" (which is a chair on wheels with a hole where the seat is).

Mum was very apologetic. I quickly slide the bedpan under her and she removed her pants. I went behind the curtain to give her some privacy.

A few minutes later, I went back into the room. Again, mum was very apologetic, and asked me to get new pants and a fresh "centre piece" that is placed on the mattress under the the area around the groin and buttocks. Mum had wet her bed.

She was so embarrassed, despite the fact that I repeatedly told her not to be. "It's all very normal functions of the human body, don't be ashamed of it!" I thought about the times when I must have wet my bed, and when mum had to clean up after me. I told her to lean to the side so I could inspect the bed. Luckily, only the "centre piece" and part of her pants got wet, and all that could be changed quickly.

"Don't think too much of it, mum. You tell me whenever you need to go [to the washroom]. Don't hold anything in." I meant it. Why should anyone be embarrassed about needing to poo or to pee? Why should it so shameful to have to clean it up afterwards? I guess part of the reason is the loss of autonomy, and perhaps te shame that mum feels that she is dependent on someone else, on her child in this case, which adds to the sense of regret and embarrassment.

Mum said she was weak after the entire episode. For the past few days, ever since the surgery, she was connected to a catheter, but that was removed this morning. And I imagine it takes so getting used to and it's a matter of regaining control of the bladder and urinary muscles.

"Think nothing of it... Get to sleep," I said softly as I kissed her hand. She stroked my hair and smiled and thanked me...

Second day

30-12-2011

20.43

Another day at the hospital, this time a twenty hour shift. The remaining four hours of the day I went home, showered and napped.

It feels like going to work, and I feel fulfilled. I am tired, but still calm and composed. It was a better night, as mum seemed to have slept almost continuously through to the morning. I was like a zombie and sleep overcame me so quickly, waking only when the night nurse came to check up on mum's vital signs and IV drips. There was a little fever, as her body temperature rose by a little, but that came down when mum slept on an iced cushion.

Today, for the first time since her surgery, the nurse made her sit up. It is quite an ordeal, a painful ordeal, for mum would groan and grimace in pain, and I could quickly see beads of sweat form on her face and forehead. Mum had to learn how to sit on the side of the bed, and in front of her were four legged crutches to support the weight of her body. The trick is to make sure her spine can support itself and that she can sit up straight, which may seem so easy and something we take for granted, but for her, it's back to the basics. In a way, it's like a baby learning to sit, learning to move, leaning eventually to walk steadily. It's a slow process, and takes a lot of patience.

I would hold mum's hand whenever she sits. She's supposed to sit at least ten minutes, but after five or so, the pain is so intense she just wants to lie back down. The surgical wounds are still healing, so much of the pain comes when she moves or extends her back. At least the colour of the blood directed away from the wound and into pouches has gotten paler, a sign that the wound is closing and bleeding is stopping.

A major discomfort is the phlegm that collects in the throat but is hard to get out, especially as mum spends much of the day lying down. The nurses give her an inhaler which she uses three times a day, and that is supposed to thin the phlegm. When she uses it, my aunt like to joke it's as if mum is smoking a water paper, because white mist escapes her mouth after a few inhalations.

To prevent bed sores, mum is encouraged to turn her body once in a while. And I massage her, pat her back, rub her muscles, arms and feet, so that even though she's on her back much of the day, she does not lose muscle integrity. Again, massaging mum brought me back to those nights I used to rub my ex's legs and feet whenever they were sore... Bitter, bitter sweet... But now it is my mother, someone who loves me, someone I love deeply, unconditionally. And it is literally "till death do us part", and I need not fear or worry, like one would with a partner, that one day all  will change with a change of heart and change of feelings.

Mum keeps on thanking me, but I'm not sure for what. Am I not just doing my "job" as a son? Am I not performing my "duty" as a child? I deflect her thanks, for fear she'd get sentimental and start crying. I can imagine lying there, almost completely dependent on others for such simple needs as going to the washroom and feeding can be very frustrating, especially for someone who used to be so independent and who used to roam the world... So I joke with her, tell her that I'm her agent now, and that I'm managing her busy schedule and trying to keep loyal fans at bay because she's too important to meet and greet everyone. Whoever calls must go through me. And not only that, I'm a nutritionist, for I jot down everything and the volume of everything she consumes (in liquid form). And I've become a urine and faeces specialist, who analyses stool and urine samples and reports it to the nurse. And I'm a masseur too, giving her pats and massages (oil, deep kneading, finger-and-toe massage options available on request...) every few hours or so.

Most importantly, my role is that of a child, who so wishes and prays that his mother will soon recover and be better...

--

22.30

I had to lie. And I felt terrible about it. Brother and I have been in contact regularly since I arrived back home. He's very concerned, and I told him not to worry too much for I'll be by mum's side almost all the day.

Brother wanted to know details of mum's surgery and what the doctor said. "Did they remove everything from the spine?" he asked. I said yes.

But in fact, there is a little bit left on another section of the spine they dared not touch. To do that would have increased the risks of causing permanent nerve damage. So there is still some "dark" bits left. For now, it is ok, but with time... Well, with time everything will change.

"What about other bits of the body? Are there still traces of the cancer?" I answered this honestly. There are, the latest MRI scan revealed that, but the doctor did not say exactly where. Is it in her colon? On her lungs? Or on the lymph gland? I am not sure. Te doctor said in a few days, they will conduct some tests, and he will show me the results.

Should I have lied? I don't know. I know more karma points have just been  deducted. I just want to save brother from devastating news, for he is already very anxious and emotional (more than me actually...) I can imagine how he's feeling, perhaps guilt ridden because he cannot easily be here and spend more time to take care of mum. But I assured him again and again, I'll do what I can and told him not to worry. On the phone I could hear him strike his lighter, ready for another cigarette.  I scolded him.

"You really have to be careful with your health and not smoke so much! Look at mum  in the hospital, and you have a wife and kid now!" He was silent, but I think he got the message.

I think once again he realises what I do to keep this family together, to attend to everyone, to try to placate everyone's fears and anxieties, and he appreciates it. In a way, death and illness, first with our dad, and now with our mother, has brought us closer and closer together. Whomever in the face of death shies away and turns away has no idea what life is really all about...

Bodily functions

30-12-2011
16.46
She was embarrassed, more I think because of the smell and idea of having to clean up after her. "I'm sorry you have to do this..."

"Why? You used to clean up after me when I was a baby, and you did it for years!" There was nothing weird about it... Well, except perhaps for when I have to get the bedpan and hide behind the curtain when mum loosens her hospital gown. But other than that, everyone poops, everyone pees, it's the all part of having normal bodily functions. In fact, after three days, I was glad mum said she felt like going to the washroom "to resolve" (解)  things (which learned today was the medical euphemism for pooing).

I don't have to worry too much about mum peeing, for a catheter and tubes direct the urine into a bag. All I have to do is regularly empty the pouch and note the volume of urine and the time. As for the "big job", today was the first time, so there was a lot to learn. As mum is more or less bed ridden for now, she must do it lying down (after some rehab, she should be able to sit on a mobile toilet...) It's a struggle, partly because mum is embarrassed, even embarrassed to say that she needs to go and to trouble me or the nurses. Her cousin who came to visit told her also it's nothing to be ashamed about. "Though he's a boy, treat him as if he were a girl..." She said to placate mum's embarrassment.

She needed to go three times today, and every time the bedpan is set I hide behind the curtain. I came prepared yesterday and bought some air freshener to get rid of odours, and I think that helps mum relax. Once she's done, I take the bedpan, note the shape and size of the collected goods and give her warm water to cleanse herself. I make funny comments after she's done just to "lighten" the mood and tell remind her again it's the most natural thing in the world...

Afterwards mum looks relieved, and I look at her relieved as well. She's been feeling bloated whole day yesterday, and at least now she seems to be getting back to the normal bodily functions, which is very good after such a major surgery.

"Thank you..." she says to me every time I clean up after her. But it is nothing, it is not even remotely revolting for me. "Remember you used to do this for me many, many times a day!"

How heart warming that the roles of carer and the cared for have reversed...

At the hospital

At the Hospital
29122011
01.30

As soon as I got out of the elevator on the seventeenth floor, my cousin was there to greet me, with a smile. "I knew it was you when I heard the doors open!"

I gave her a big hug, and wackily she led me to mum's room. My aunt, her sister, was pacing in front of it. "You've come a long way," she said. The taxi driver said the same thing when he asked whether I just came back from a holiday. When he learned I was here because mum was in the hospital, he said it was touching of me to do that. "It's my mother," I said, "I'm just doing what should be done..."

Mum was lying on the bed when I came in. She open her eyes and one of the first things she said was "I told you not to come!" However weak she was and was feeling, she mustered a smile. It was beautiful to see her smile.

I held onto her hand, the one that for over a year now has caused her so much grief and pain... She responded, and though her grasp was weak, at least I could immediately tell she still has control of her motor skills. I looked at the other arm and hand, and they too were moving, twitching. And her legs were folded upwards.

"The doctor said I can still lift up!" Was it just me, or was that a  veiled joke? They laughed, and I stood there wondering what I have been missing...

I have indeed missed a lot, and it'll take time for me to be on top of things again. In the time it took me to cross the Pacific, the surgery was done, much earlier than expected, for just yesterday they said it would take around a week to get a slot in the surgery room. But health care is that efficient here, and apparently also very effective...

 From sevenish in the morning till around five in the afternoon they operated on her. Ten hours... It was only at nine or so, some fourteen hours after she began the long, long ordeal if surgery, that they moved her to the intensive care ward to settle for the night. She is so brave, my dear mother, so very, very brave...

For now, the details are still vague, and I haven't asked much, but apparently the surgery was a success and the tumour has been cleared. What are the details of the current prognosis, I'm not sure, but at least there is no damage to the spine, and mum still has her motor and speech skills.

Mum said she feels alright, and that she does not feel any sores or pains. Is it because the tumour has been removed, or the effects of the anaesthesia which still has to wear off? I stroked her hands, her arms, which were a bit swollen and dry, but at least they responded to my touch. Around her bed are various tubes of blood and IV drips. To breathe, there is an air tube going into her nostrils. She is connected to a catheter, which I must check regularly and note the quantity of urine that comes out.

"I cannot move my head," mum said, for she had a neck brace which secured her spine and held up her head. I don't know how much discomfort she is in, for in preparation for the surgery, she has not eaten or drunk anything for over 24hours... So while I was being fed four meals and nestling comfortably in my business class seat on the journey here, mum has been fasting and under the surgeon's scalpel. Silently, and ever so heart-felt, I sent my eternal gratitude to the surgeons and assistants who gave mum renewed hope of life...

As of tomorrow (today, as it's past two in the morning now...) mum can begin to take in liquid food. Little steps to recovery, little steps to getting back to her normal self again. For now, all I can do when she feels thirsty is moisten her lips with a cotton bud. As she just had surgery, there is a lot of phlegm that collects in the throat she has to get rid of. And that she can do by herself without the need for an extractor.

I am relieved, happy to see mum seemingly well and talking. Her mind is still clear, and still her old self, for she repeatedly told her sister and my cousin to go home, and told me repeatedly to stop typing in the dark... It's so... mum, and I am happy for it.

Need to get some rest myself, for I feel the fatigue and time difference creeping in... I can barely keep my eyes open....

But at least I'm here now, I'm lying right here next to my mum...

29122011
02.48

Mum screamed out loud. "It hurts, it hurts!" My tears came almost instantly, hearing her  But it must be done.

Every two hours or so the nurses come to flip the body of patients  Mum seemed confused at first, lost at what they were going to do. She protested even, told them to be gentle because it hurts so much.

The two nurses lifted the duvet under her and turned mum on her side. Mum protested and tried to cover herself up, as if afraid that her underbody was naked, and that she felt ashamed. As soon as Her blanket was lifted, I could smell a nauseating scent. The undoubted scent of urine. Mum cried out loud in pain again as the nurses adjusted her neck brace.

I saw her face contort in pain, terrible pain. Her forehead is bandaged, and her hair is pushed upwards. She told me they had to shave much of the back of her head to operate. "It'll grow back," I told her and smiled.

It was a massive surgery mum underwent, one that lasted over ten hours. And it is a blessing that even after such a long ordeal, mum is still very much awake and conscious. As the nurse said when she came by on a routine visit, it's a good sign.

For a while, mum could not fall asleep. "The anaesthesia is wearing off, I can feel the extreme pain where they operated..." She fiddled with her neck brace, which was compressing uncomfortably against her shoulder bone. I tried to help her find a comfortable posture, but was very afraid to move her head too much. A couple of times, she reached out to stroke my hair and my hair, the way my ex used to do. It felt bitter sweet, soothing and nostalgic. For moments, she would look at me and I would look at her. Silent moments, of a mother and child looking at one another in the eyes. How many people can do that and not feel awkward or intimidated?

Mum would attempt to muster a smile, as if comforted, warmed, that I am here right next to here. It is bizarre is it not... One moment I'm on the other side of the world, so far away from her, and now I'm here, so close to her, touching her, massaging her sore fingers and legs with my bare hands... That is love. That is unconditional love, and it can resist and triumph over anything, even over bodily pain and mental anguish, can it not?

It was at that moment I first realised what I had seen till now was mum being stationary. Whenever she moves, there is a lot of pain she has to bear. It will be a long, long road to recovery... How long I'm not sure.

For now, I'll just try to get through the night and see what happens next. Meanwhile I'll need to catch some sleep before day breaks...