03 March 2012

Rights

I miss him so...

It's been a long, long time since I last saw him or spoke to him. And truth be told, I do miss him very much, more than I like to admit...

Almost daily, I look at his picture and smile. His face, his eyes, his body reminds me so much of our moments together, of the way I held him, touched him and stroked him...

I must admit, for a long time, I didn't really think much of him, even when people kept on telling me how special he is. But it took me time to realise how much joy and warmth he brings to my life, to realise how, despite own brief-lasting moments of intimacy together, he has grown in in importance in my life. I look at his picture, and all I have to do is close my eyes and remember the happy moments we spent together, and my heart races with joy and excitement.

I yearn to see his smile, yearn to smell his scent, to feel the warmth of his body as he lies next to me... I would like to see him everyday, to talk to him, but I can't. I don't know how. Who am I to him really, who am I to him in this great big world? But he showed me a whole meaning of what love means. He brought me so much joy, such much innocent joy that I seemed to have forgotten.

When can I see him again? When can I hold him close and breathe in deep and let his scent fill my nostril and senses? I look forward to the day when I can kiss his cheeks, and dig my head snugly into his belly as he plays with my face, plays with on the strands of my hair. I look forward to the day when he can lie next to me, look me so intensely in the eyes and when we can fall asleep together.

 I miss you so...



I truly do miss you, Little Rabbit!





angry

I know she is in pain. Just how much I cannot know, just how unbearable I can never feel. But of everything I do for her, of all the time I spend by her side, it hurts to be shouted at.

I know she's unable to control her temper, and she doesn't mean it. I know it's the pain talking, it's the suffering that is driving her to lose her cool. And after the shouting is over, after the moment has passed, after the hurtful words have subsided, there is no more hurt. But it breaks my heart to hear mum be abusive, not just to me, but also to the nurse who is just doing her job...

"I'm going to pull this needle  out myself!" She tugged at the IV in her arm, I watched in horror  and in pain. She was angry, restless, tired, and her hand was very numb. But the nurse was just following instructions, and mum needs the drips for her health to improve. "Just five more minutes," the nurse said, "I'll be back in five minutes." Within two mum stormed out to the nurses station and insisted the  IV be taken out.


I followed her, embarassed by her behaviour, but also worried she might trip and fall. Her walk is still very unstable, her stride wobbly, despite her claims that she does not need anyone by her side. Which puts the pressure on me, for she refuses to have anyone come see her or visit... Twenty-two hours at the hospital today. I am tired...


I only hope she can sleep well tonight, and that by morning, she will feel better, and her temporary anger and frustrations will have subsided...


In the meantime, I tell myself to let go... she is in pain, she is frustrated... It doesn't matter what she said to me, even if it hurts.


 

Vomit again

Thinking mum did not vomit (severely) for two days, I took her to the rooftop garden for some fresh air, and bought her some light vegetables and a bowl of rice to enjoy in the open air.

She took one bite, and her face puffed. I handed her a plastic bag, but she couldn't open it quickly enough. Out poured her vomit, splashing over her hands, her clothes, landed on my trousers and on my feet. Bits and pieces of food flowing in yellow stomach juices. We stood there, both sprayed with vomit. Mum looked apologetic. I quickly handed her tissues and helped wipe her clean, or as clean as I could get her clean before rushing back to her bed. My clothes were stained with her vomit, but it didn't bother me. Not the slightest bit.

Before we left the rooftop garden, I looked back at the puddle of vomit on the ground. Disappointed, deflated... I just wanted to give her breathe of fresh air and, finally after so many days of just liquids and IV drips, some solid and nutritious foods. But her body rejects it. Rejects it all... How could I bear to eat what she could not...?

Just when you're made to believe things are getting better, things get worse...

02 March 2012

Ward 172

There is a patient  a few doors down who calls out every few minutes. The call is like that of a parrot, sharp, deep and annoying after a while. He cannot help it. I saw him and believe he suffers severe neurological damage, and is in a vegetative state.

Ward 172, on the seventeenth floor, is one of the four neurosurgery wards. Mum was admitted here for two weeks before and after her spinal surgery, and now she has been re-admitted here again to monitor her condition and get to the bottom of her vomiting. I walk around the corridors and occasionally peek into the rooms. Those few seconds when I peek into other rooms, I see so much... patients lying there with their mouths open and tubes inserted into their nostrils... patients writhing in their beds in great pain... a wife spoonfeed her husband, a mother massage her severely paralysed child...

Illness affects a lot of people, not just the patient in question. And me being here, being able to care for my mum, is nothing compared to what so many people do quietly and invisibly. There are so many unsung carers out there, who resist tiredness, who must overcome despair and anguish, and try and try and try hard to provide and care for their loved ones in the hope that the loved one will get better again. We, the carers, are the silent masses behind every patient, who provide precious love and support through our words and actions of encouragement. we are people from all walks of life, speaking various tongues, from all social backgrounds are all gathered here, brought together by the fragility of our human bodies, brought together by our care and love for our loved ones.  Human suffering is universal, and human compassion and care too crosses all boundaries.

I am touched to see family and friends gather around other patients, just as some of mum's relatives and friends have come to see her when she was hospitalised (less people came to visit this time, because mum does not want to alarm people again...). Besides the fruits and foods they bring, they bring much encouragements, they bring stories  of the outside world into the hospital ward, and they offer patients comfort and invaluable support to complement the professional care and medical assistance the doctors and nurses provide.

My story is not unique. It is repeated and replayed day in and day out throughout the world, and often is untold. When I think this way, when I see other relatives and friends take care of their loved ones, I remind myself I am just one of many. And that in itself is a source  of strength to push on and to care for my mother, no matter what. Because so many people do, and so many people do without  complaining...

Day two

 The IV drips and medicine to soothe mum's stomach upsets have helped, and mum did not vomit as much ( though she still did vomit). Lunch time, she even ate a little bowl of rice and some vegetables and fish. It's progress, given that within an hour or so she would be bending over the toilet bowl and pouring her guts out. That didn't happen.

But mum slept poorly, if at all last night. It may be due to the IV drips, which cause many visits to the washrooms (after all, it's all bags of liquid with nutrients and minerals). Other than that, she says her bones are very sore. I got up numerous times during the night to massage her bones. Her thin, thin bones, some of which you can feel is sharp around  the edges, because the layer of skin around the bones have thinned so much, because she has on the whole thinned so much. It is hard to sleep when I hear her next to me turning and twisting.

Mum was very tired the whole morning, and that caused her to be moody. I meant well and wanted to take her for a walk. Again, I arranged for another surprise visit by her grandchild and my sister-in-law. But it was hard to get her out, and at one point she angrily told me to ask them to go home, because she just didn't bother going downstairs to meet them...

"But have you seen how you smile and laugh when you hold your grandson? Isn't that the best medicine..." I was hurt, for the little surprise was close to being ruined. There have been plenty of moments in the past month or so when my attempts to do little special things are met with rejection or even irritation and anger, even though I only mean well. I hurt, but I remind myself it is not mum who is angry. It is her illness, her fatigue, both mental and physical, that is causing her to be moody and irate. I tell myself to just bear with it...

Bijschrift toevoegen
Eventually, mum did go down to meet my sister-in-law and nephew who were waiting there. Within seconds of seeing them, mum smiled, and smiled, and smiled. I went to pick up some bread and fresh juice, and mum had it together with her grandson. "See," I said later, "Is there anything more special than breakfast with your grandchild?" She smiled in reply.

I again stayed 22hours before my cousin came by and gave me an hour or two to go home, rest and shower. When I got home, it was empty. To think, only yesterday when I went home, I opened the door to the shriek and giggle of my nephew. And now, the house was empty and so very quiet. There was still the smell of his baby oil in the air, and in the washroom was his special little bathtub. I suddenly felt so sad, and then I realised again how much I have grown attached to my nephew's presence, and how much I miss his presence.

His being, his very small hands, his big eyes, his cute little red cheeks are together the source of hope and encouragement. The way he now jumps up and down, the way he likes to wiggle and dance, the way he likes to stare and drool when he sees other people eating can wipe away all the accumulated tiredness and anxiety away. I really do miss him, more than I realise. Because he really has been a source of relief and joy in mum's life, and in mine.

When I said goodbye to him, and to my sister-in-law, I suspected it would perhaps been a long while till I see him again.

And I look forward to that day. I am sure mum does too.


Day two

 The IV drips and medicine to soothe mum's stomach upsets have helped, and mum did not vomit as much ( though she still did vomit). Lunch time, she even ate a little bowl of rice and some vegetables and fish. It's progress, given that within an hour or so she would be bending over the toilet bowl and pouring her guts out. That didn't happen.

But mum slept poorly, if at all last night. It may be due to the IV drips, which cause many visits to the washrooms (after all, it's all bags of liquid with nutrients and minerals). Other than that, she says her bones are very sore. I got up numerous times during the night to massage her bones. Her thin, thin bones, some of which you can feel is sharp around  the edges, because the layer of skin around the bones have thinned so much, because she has on the whole thinned so much. It is hard to sleep when I hear her next to me turning and twisting.

Mum was very tired the whole morning, and that caused her to be moody. I meant well and wanted to take her for a walk. Again, I arranged for another surprise visit by her grandchild and my sister-in-law. But it was hard to get her out, and at one point she angrily told me to ask them to go home, because she just didn't bother going downstairs to meet them...

"But have you seen how you smile and laugh when you hold your grandson? Isn't that the best medicine..." I was hurt, for the little surprise was close to being ruined. There have been plenty of moments in the past month or so when my attempts to do little special things are met with rejection or even irritation and anger, even though I only mean well. I hurt, but I remind myself it is not mum who is angry. It is her illness, her fatigue, both mental and physical, that is causing her to be moody and irate. I tell myself to just bear with it...

Eventually, mum did go down to meet my sister-in-law and nephew who were waiting there. Within seconds of seeing them, mum smiled, and smiled, and smiled. I went to pick up some bread and fresh juice, and mum had it together with her grandson. "See," I said later, "Is there anything more special than breakfast with your grandchild?" She smiled in reply.

I again stayed 22hours before my cousin came by and gave me an hour or two to go home, rest and shower. When I got home, it was empty. To think, only yesterday when I went home, I opened the door to the shriek and giggle of my nephew. And now, the house was empty and so very quiet. There was still the smell of his baby oil in the air, and in the washroom was his special little bathtub. I suddenly felt so sad, and then I realised again how much I have grown attached to my nephew's presence, and how much I miss his presence.

His being, his very small hands, his big eyes, his cute little red cheeks are together the source of hope and encouragement. The way he now jumps up and down, the way he likes to wiggle and dance, the way he likes to stare and drool when he sees other people eating can wipe away all the accumulated tiredness and anxiety away. I really do miss him, more than I realise. Because he really has been a source of relief and joy in mum's life, and in mine.

When I said goodbye to him, and to my sister-in-law, I suspected it would perhaps been a long while till I see him again.

And I look forward to that day. I am sure mum does too.


The view

"Come take a look at this view," I said to mum, numerous times, "You can see the mountains and our house from here!"

I thought the view would cheer mum up, get her out of her hospital bed, give her (literally) a change of scenery. From the seventeenth floor you van really look out and see far out and clearly. All these buildings, cupped gently by surrounding mountains. But for some reason mum refused to come, again and again.

"Why don't you want to see this...?" I asked, disappointed. I'm running out of things to make mum feel better about being hospitalised.

"Because... Because you dad used to stand there and look out the window!" she said loudly, almost with anger.

It suddenly hit me then. Dad stayed in the same hospital, though on the twelfth floor, the week or so before he passed away. Mum said he stood before that view for a long time, silent. He took in that same view of those buildings, of those green mountains, of the same sky...

01 March 2012

First day back

Mum was still very sickly this morning, but by late afternoon she got gradually better. Her neurosurgeon came to see her twice today, once in the morning to arrange for a CT scan, and later in the afternoon to tell her the wound from the surgery she had two months back is healing well. As for the cause of her vomiting, the neurosurgeon suspects that it's due to the steroids she has been taking in preparation for and straight after her cyberknife treatment. The steroids are supposed to protect against nerve tissue damage when the patient is radiated with gamma rays, but too much steroids in a short period of time may cause the stomach and digestive system to become irritated or even damaged. That may be the reason why mum has been throwing up profusely over the past week or so. May be... The neurosurgeon would like keep mum in hospital for a few more days to observe her condition. And an endoscopy is planned for the coming days to double check there is nothing seriously affecting the stomach.

It's a relief to see mum's condition stabilise, for last night, especially late at night, and this morning, there were moments I thought that her body would become so weak it would go into a seizure. There were such dark shadows around her eyes, and her speech was slurred. Going to the washroom took great effort, because she wobbled when she walked, and swayed when she stood. There were moments when I thought, pessimistically, that perhaps this is the way it will gradually end, and I was even checking flight times and wondering whether to tell my brother to return home. But we're not there yet. We're not there. Yet.

After a twenty-two hour shift, I went back home to take a nap and shower. Again, it felt like those first few days, of poor and disturbed sleep next to mum on the foldable chair-bed, and of having to be constantly awake and aware of mum's condition and whereabouts just in case she should faint, or worse. I was drained when I got home and collapsed into bed, mum's bed. And it was the first time I slept in a bed for over a month. It was beautiful, my nap.

As my sister-in-law and nephew came back to visit and stay with us, I returned to hospital with a surprise for mum. "Your grandson kept on saying she wanted to see you!" I told her. Of course, he's just six months old and can only drool and make babbling sounds, but mum found that funny. In the courtyard of the hospital, mum, my sister-in-law and nephew sat and chatted. I sat and watched, witnessed and committed to memory the beautiful smile on mum's face as she played with and admired her beautiful grandchild, the source of her hopes and untold joys. I watched and was touched by the interplay between mother, child and grandmother, and smiled at the way they commented how cute the baby has grown, how active and curious he has become. All the while, my nephew looked around him with big, wondrous eyes, unaware that his birth, his presence, his laughter, the grip of his tiny little fingers have been like a precious medicine to ward off the debilitating effects of cancer.

Mum lay in bed just now, her eyes so weak and tired and hard to keep open, but still she said something very touching. "The way you take care of me, I have earned a few more years. I can see my grandson grow up, I want to see you settle down..." There was hope in her voice, and that was perhaps the most reassuring sign in over a month, since her health began going downhill just after the lunar new year period. There is hope yet, because this lady, my dear, brave mother is still fighting. My dear, brave mother still wants to live a few more years.That is her hope, her dream. Whether life will give her the time and the chance to realise her dream is not up to us...

"I hope those few more years are happy ones," I said to her as I patted her back to soften her sore muscles and ease her into sleep.


29 February 2012

DNR

Sometimes you need to prepare for the possibilities, otherwise life will catch you offguard. Or in this case, death may catch you offguard.

"Did you already sign the DNR form?" I asked. DNR. Do not Resuscitate. If we should come to a situation where the heart stops beating or should mum stop breathing, it is mum's wish not to have any attempts to be brought back to life. I remember it was I who looked into this sometime ago. And I printed out the forms for mum to fill in and sign. But I never really found out whether she did sign them or send them in to be processed.

The DNR option is not giving up on life, for she has already been fighting for life for so many years already. It's just when you reach a certain stage in life, close to death, when your breathing and heartbeat and vital signs are all fading, what is the point of being resuscitated? It would not be being brought back to life, the ordinary meaning of the word "to resuscitate"; it would be brought back to suffering and waiting to die.

"Yes, I signed it..." mum said weakly.

At least for one eventuality mum and I are prepared.

Unconscious?

I called mum six, seven times and asked her if she needed to go use of the washroom. Two in the morning.
She just looked at me and said nothing. Just looked at me, a blank, sordid expression on her face, and said nothing...

Was she just too tired? Or unconscious or unable to sleep?

Why is it that in my mind I cannot get rid of the thought that when she left home today, it may very well be the last time...?



Weaker

I have never seen mum so weak before. So weak and tired she could barely open her eyes, could barely open her mouth to speak...

An hour or so after checking into the hospital, mum vomited again. A bag-load of vomit. The nurse happened to be there and commented on the colour. It's a yellowish green kind of colour, and it's the same colour as I've been seeing in her vomit at home over the past four days. I always wondered what it was, and mistakenly thought it was just the vegetables she ate that dyed the vomit so. But what I found strange was that she has not been eating much vegetables; she has not been eating much at all...

"It's stomach fluid. Bile juice." the nurse said. That sounded worrying. It must be very severe for mum to vomit up bile... It was then that I noticed she could barely walk, barely talk. She swayed when she walked, and I had to hold her and take her to the washroom.

I rushed home to get a blanket for myself, for mum had earlier told me not to stay. But as her situation seems to be critical now, I must stay. I argued with her. "I've been with you for two months, what difference does a few days make?"

I know she feels bad because my planned bike trip was supposed to start tomorrow (1 March), but I told her the island and all those places I want to visit won't disappear if I wait for another time! I know she doesn't want me to stay because she fears I might sleep badly. She doesn't want me to stay because she says she can't bear to see me tired down and overburdened. (And since yesterday, I've got the flu and am feeling very weak... I suspect i got it at the hospital where I did my physical examination...) But I am afraid that she will go into shock, because she's been losing too much fluids and not replenishing enough to sustain her body... In the end, it was the nurse's word that persuaded mum that I needed to stay.

It feels like deja vu... Two months ago, almost to the day, I rushed back to this hospital. And the room we were assigned happens to be the one right next door to where mum stayed the week or so after her surgery. So the staff I know already, and I also know my way around the ward.

Sitting in my foldable chair/bed, lights have gone out for the night. I never thought I would end up sleeping at the hospital again, but here I am again.

For how long this time, I wonder...

Apology

"I'm sorry for this..." my uncle (mum's youngest brother) said to me on the phone. He said it two, three times while we spoke for five minutes.

"Don't apologise. I'm just doing what I need to do."

He apologised again and again, perhaps because he didn't know what else to say. He saw the other day how sickly mum has gotten, but didn't realise it has reached an extent that she must be readmitted to the hospital. Never a good sign. I was shocked myself and unable to believe when the nurse weighed her at check in that she is now 48.2kg... Skin and bones, just skin and bones now.

He said he wants to come see mum again soon, but I told him not to worry, for I am here. He has a very stressful job already and he lives in another part of the country so I didn't want my uncle to have too much trouble. But I know he will visit soon, for he cares deeply about his older sister.

"I'm sorry to trouble you like this..." Trouble me? My own mother trouble me? I'm tired, yes, I really am tired, and it did not escape me that mum was readmitted to hospital almost exactly two months to the day I returned here. But taking care of mum, making sure she gets better, stronger, even if temporarily, is no "trouble" at all. If I could only see a smile on her face, if only I could hear her say " I'm feeling fine today!" that is enough.


Mum's scribble

In preparation to re-enter hospital, mum asked me to go to the hospital where she received the Cyberknife treatment. She would like to copy her latest scans and xray in case the hospital would like to see it.

For me to apply for her medical records, I needed an authorisation. For the first time in a while, she picked up a pen and scribbled something. The writing is faint, and slanted, clear signs that she has difficulty writing. And the characters are squiggly, meaning she can't hold the pen steady.

She signed it, and stamped it with her legalised seal. I am now legally authorised to apply for medical documents on her behalf.

And if need be, decide the course of her future medical treatments, including termination of treatment. 

Return to TVG

As I was in the hospital doing my physical examination, at the other end of town, mum went back to see the young neurosurgeon who operated on her. I couldn't go with her, but for some reason the guy actually asked mum about me and whether I went back to Canada.

The doctor was very surprised to see mum in the state she is in. The surgery was a success, and before leaving hospital towards the end of January, mum was making steady progress in recovering. But the bouts of vomiting, plus the lack of physical exercise and poor quality of sleep has serious drained mum's reserves. She is perhaps as sickly, if not more so, than that first week after her surgery...

The neurosurgeon recommended that mum re-check into the hospital for observation. Though mum resisted before, when the ER doctor wanted to keep her in hospital, this time, coming from the neurosurgeon whom she trusts, she agreed.

I just got a call from the Taipei Veterans General (TVG) hospital to say they found a bed for her, and asked her to check in this afternoon. Not sure what will happen in the next few days or so, but my plan to go biking has to be postponed yet again. Mum told me to go anyways, she knows I need it. I know I need it too. But I cannot just go off on my own while she's in hospital an vomiting severely.

The bike, the towns, the ocean and mountains can all wait...

28 February 2012

Vomit...

Just as I was about to lie down, I heard the hot water machine turn on. From experience, I've come to know that that sound is occurs either when mum is using the shower or flushing the toilet. And it must be the latter, at a quarter past midnight.

I rushed to her bedroom, and even before I entered I heard the sound of vomiting. She heard my footsteps: "Don't come closer..." But of course I disregarded her remark, and bent down to her level and patted her back as she vomited again over the toilet bowl. This is very serious... The one day stay at the ER yesterday helped, and she did not vomit again last night. But today she is vomiting again (she actually lied to me when I asked her whether she vomited or not during the day today. I was out at the hospital myself, so I couldn't tell... She later admitted that she did vomit when I asked her again just now.)

She lay down to rest again, the shock of vomiting can be very tiring. I patted her back in an attempt to make her feel comfortable. And it was then that I noticed again how thin, how frail she has become... I patted her shoulder blade, and it is really just a protruding piece of bone, which reminds me a lot like a piece of folded chicken wing... I patted her back, and it was a hollow echo... Her arm has become a soft, limp lump of thinness and bone.

What... what has my mum become over the past few weeks? Did I not take good enough care of her?
Where will she find the reserve to fight if something comes back again...?

To think just this time last year, she was around my weight. And within a year, she has dropped about ten kilograms.

It is heart-renderingly awful to think that...


UPDATE: 29-02-2012
Mum weighs 48kg now, a drop of around 16 kilograms compared to last year... Terrifying.

2-28

Memorial plaque on Green Island, a former penal colony:

In that era,
How many mothers
Wept through the nights
For their children imprisoned on this island?”
Exactly 65 years ago, began a terrible tragedy in Taiwan's modern history. A scuffle broke out in downtown Taipei when policemen confiscated contraband cigarettes sold by a simple lady trying to make a living. The police fired into the crowd and killed many people. A mob gathered. More people were killed. Martial Law was declared, and Taiwan descended into chaos as the military ran amuck all over the island, shooting people, arresting people. 28 February 1947 (2-28)marked the beginning of the massacre of tens of thousands of Taiwanese people, and the beginning of close to forty years of Martial Law.

It was not just a simple scuffle caused by the  confiscation of contraband cigarettes. Taiwan, a part of the Japanese Empire prior to WWII, was delivered to the Chinese Nationalist government under trust. It was commonly agreed that a more permanent solution to the status of Taiwan would be sought after the dust has settled. The Chinese Nationalists came with their administrators and army, took political control and nationalised all assets. Fighting a Civil War against the Communist Chinese, they plundered Taiwan and shipped everything to China to sustain their war efforts. Inflation was rampant on the island, so was crime, disease and lawlessness-- all these social ills did not exist under the Japanese colonisation. As a saying goes at the time: "The Americans were merciful on the Japanese. They only dropped the atomic bomb on them. They dropped the Chinese on us". 

Social injustice was brewing, for Taiwanese people were treated like second-class citizens in their own homes. Many Taiwanese could read and write, many studied in Japan and had university degrees. The influx of Chinese Nationalists saw these people as "traitors" and "Japanese lackeys" and stripped them of their professional positions. The Chinese soldiers came and took everything valuable. They were uneducated, rude, and spoke a foreign language, Mandarin Chinese, which the vast majority of people at the time did not understand at all. My grandparents were Japanese citizens, grew up speaking Taiwanese and Japanese. These foreign Chinese people suddenly arrived in their homeland and were parading the streets like they were the overlords.

The events leading up to the scuffle on the streets of Taipei, and which spread to other cities throughout the island on 2-28 was an accumulation of pent up anger and frustration. Colonised by the Japanese, and now the Chinese came... what happened to the idea of self-determination that the world was so fond of in all former colonies? The Chinese Nationalist government made a mess of the economy, and corruption was rampant. Taiwanese professionals were sacked and replaced by 'people who happened to know people'. 2-28 was the result of racial tensions and ill feelings between the colonised and colonisers. And the latter responded with brutal force.

My aunt told me at the time of the event, she was around five years old. The square in front of the train station in Chiayi ran red with blood. The square was a public execution site. That was just one city. In dozens of other cities, people were rounded up and shot. Others were dragged from their homes and never heard from again. The Chinese Nationalist government used the excuse that these were "Communists" and that these people were rebelling. Most of the victims were doctors, lawyers, politicians, people who had influence in the local community; people who posed a threat to the new regime. Terror reigned throughout the island and for four decades, a period commonly known as the White Terror...

All things Taiwanese was suppressed. The language was forbidden, and speaking Taiwanese would be subject to a fine in school. Taiwanese music was banned, Taiwanese theatre prohibited, Taiwanese history erased, to be replaced by all things Chinese. Chinese and the idea of a great China was promoted and propogandised in the media and schools. People were brainwashed into believing that we are all part of China, and that the Communists which took over on the "Mainland" were cruel bandits that needed to be ousted. But the reality was that the Chinese Nationalist were no less cruel, were no less inhumane and oppressive.

Throughout the decades of terror, many people were executed without a fair trial, and many more were imprisoned and forced into hard "labour reform". Talk of democracy was criminal, talk of Taiwan and independence was poisonous and treasonous. Many democracy activists  are now members of the opposition party, and many had their fair share of time languishing in prisons. Only until 1987 did Martial Law end and the democratisation wave begin. It was a bloodless coup and opening process, which eventually led to parliamentary and later presidential elections. Elections that till this day, some two decades after Taiwan began democratic, are held up as an example for other Asian countries to follow.

2-28 is a public holiday, and many forget the significance of this date in Taiwan's history. The Chinese Nationalist Party, which perpetrated the genocide against Taiwanese people are now back in power. Taiwan. There are those in the Chinese Nationalist Party who even deny tens of thousands were killed. In Germany, to deny the Holocaust is a crime, but in Taiwan the perpetrator of the gravest offence against citizens, Generalissimo Chiang Kai-Shek ("Cash my Cheque" as the Americans liked to call him, for he was so corrupt...) can still be seen on coins and his name is used as  street names in cities around the island.

 2-28 is not a day to remember old grudges and open wounds. It is a day to remind ourselves of where we came from, what sacrifices were made by our predecessors, and also to remember that the government was once a cruel, oppressive apparatus that did not blink to shoot down tens of thousands of its own people. We must be vigilant against the return of oppression and be wary of attempts to deliver this country and its people into the hands of yet another foreign regime. Taiwan's democracy was won through decades of struggle, and many died or suffered at the hands of tyranny  for claiming the very liberties and freedoms we so take for granted today.

2-28 is not just a holiday. It is a day to remember...

Meeting a friend

I finished my appointment at the hospital, and remembered I have a friend who lives close by in this quarter of the city. So I called her up, and she was more than happy to meet me.

She and I actually met during our studies in Montreal, and she's like an older sister to me, always willing to listen, always willing to give me sound advice and reassure me I'm doing alright. Her mum also had cancer, and my friend went through a similar situation I am facing now.

We sat down to dinner, a simple congee, as I just finished my one day fast in preparation for the colonoscopy, and therefore cannot eat anything too heavy. We exchanged lives, but much of the conversation was on me and how my mum has been doing.

Like always, she listened patiently and attentively, and nodded whenever what I described was a reflection of what she experienced earlier in her life with her mum. At times, I'm afraid to go too much into detail or talk too much, because I'm afraid it'll bring up sad memories that she would rather not remember. But my friend's reassuring look told me to go on, for she is listening.

"What makes me so sad and worry is seeing mum not move an just sit there..." I said, "I know, no, I can imagine that she is in a lot of pain, but sitting there and not moving is bad for her..."

Mum friend agreed. Her mum, in the final stage of her illness said "no" to everything. "Do you want to go abroad and travel?" No. "Do you want to go to the hot spring?" No. "Do you want to take this medicine?" No. No. No was the answer to everything.

Will mum also descend to such a level and refuse to do anything...?


Heartbeat

irregular heartbeat. I don't smoke, I don't drink coffee or tea (to excess...). The doctor can't figure out what's wrong and wants a further examination.

"You don't feel like your heart sometimes skips a beat or accelerates with no reason?"

No. My heart just... Beats. I don't really pay special attention to it. I do know whenever I measure my heartbeat, it's very slow, always under 60 a minute, so less than one a second.

The doctor wants me to come back for an echogram and to wear a portable heart regulator for 24hours before he can make an assessment. More appointments, more tests! This time for me...

My personal diagnosis for the irregularities of my heart beat?

Brokenaurs heartus.

All clear

I went in, they checked my eye sight, took my blood and urine samples, and did an ultrasound. I saw my liver, spleen and kidneys. "All good, nothing growing..." They weighed me, and I have lost around two kilograms over the past few weeks. As I suspected, for a number of people have told me this when they saw me. Seeing mum vomit has greatly reduced my own appetite. If she cannot eat, how can I sit there and indulge in food? Who can?

They led me into the colonoscopy and endoscopy room. There was difficulty at first to administer the anesthetic, for my veins are too thin. The nurse poked around my forehand for a few minutes, poking and poking until there was backflow, which meant that the needle went into the vein. I cringed as the needle lifted the top layer of my skin and dug deeper and deeper. I was led to a bed and told to lie down. A doctor adjusted my hand a bit, and I felt a rush of a liquid up my veins. They put in an oxygen tube in my nostrils, asked me to bite on something to keep my mouth open. Within seconds I began to feel lightheaded as I lay there. "I feel dizzy," I even said, and I don't know from what moment I could no longer remember where I was or how I got there....


I heard my name, the doctor called my name. I came to and was lying in a different  room with the curtains drawn. I was very dizzy, like I was knocked out and time just passes without me knowing.

"It's all done?" I asked slowly. My speech was slurred.

"All done. Rest a bit and an assistant will come get you." I looked at my watch, and it was almost half past ten, an hour or so after I first entered the procedure room. For quite some time I felt dizzy, and my stomach felt bloated. It was normal, they told me, for in order to see the intestines more clearly, they needed to pump air into the intestines in order to expand it. The air will "naturally" pass out during the day (and it did... on various occasions.)

They did not take any incisions or autopsies, which means that there are no polyps or abnormal lumps. All clear for cancer in the bowels then! I was relieved, even though I was still reeling from the effects of the anesthetic. I had some bread and apples and a hot mix of pine nuts and soy milk, and the nurse came to briefly explain that as far as they can tell now, there is just some inflammation of my stomach and intestines. Stress related probably. Another issue that I had not anticipated was something with my heart they observed during the time I was knocked out. Straight away, they made appointments to see two specialists, one to further diagnose and explain to me the minor problems with my bowels, and the other appointment with the cardiologist to further see what is wrong with my heart.

I walked around the hospital for a while, up and down 13 floors, just to get some exercise. Though I was happy there is nothing 'wrong' with me, at least very relieved that there are no signs of cancer, I felt so heavy and so very tired. It was then I realised and understood. Perhaps this is what mum feels like nowadays, but much, much worse, and coupled with perpetual discomfort from the numbness in her arms and the lingering pain from her surgery. I made a mental note not to be too hard on her, to be more compassionate and understanding...

I wandered around the hospital, and was so very dizzy I needed to sit down to wait for my next appointment. And I napped...

27 February 2012

Naked

Such a bizarre and embarrassing dream... In it I was online writing up a nice piece to share on the online community about how I am personally coping with mum's illness. There were many wonderful and supportive comments from all over the place, and I felt very supported and cared about.

Then I noticed a video I had posted with that piece of writing. Strange, I thought to myself, and clicked on the video...

It was of me singing to a song. Naked. Completely naked. And I was playing with myself, shamelessly stroking and touching myself...

I felt such terrible shame of showing myself off online like that. And I clearly remember I never posted any such thing online, let alone on an online community for cancer support...

Terribly shaken I was woken up by the alarm. Seven in the morning, and I needed to prepare to get going...

Just hope I get to the hospital without soiling myself...

3AM

A few hours prior to my extensive physical examination. I had to drink a laxative last night to clear our my intestines so they see through it more clearly. I had to rush to the washroom within an hour of drinking the extremely salty solution. No wonder they said to drink it at home and be within reach of a washroom. I almost didn't make it in time, and those movie scenes in which people prank others by adding laxatives in their food or drink... Well, now I understand how it feels.

And now there's a second laxative I had to drink, I guess to make sure every comes out. And it is all coming out, as it's just pouring out like a severe case of diarrhoea...

To be honest I'm a little anxious about the physical. I know it's vital that I get it done, especially given my family history, even though I'm still relatively young. But a part of me thinks, fears and imagines: what if they find something in my bowels? I stood in the shower last night and wondered how I would react. A thought flashed across my mind as I showered... If I do have something "bad", am I then lucky to have inherited this gift from my parents...?

I cannot be ill, I will not fall ill... I've been to the hospital so often, I've seen patients and doctors, needles and chemo wards far too much and far too often that I just dread having to do it even more and more often if I am to be struck down by the "gift" of cancer...

But it's not something I myself can control. The past couple of years I've lived with severe cases of trauma and almost constant stress, dealing with death and cancer, and also emotional trauma from the decline of the relationship with my ex. The two matters that really have mattered the most in my whole life, all falling apart at the same time. Everything together has been very unsettling and deeply impacted my emotional wellbeing, and often affecting my physical health. There are days I feel this pain in my bowels, this terrible discomfort as if I can't digest and feel bloated and ill. Moments and feelings like that worry me a lot, adding to the initial burden of stress I have to face in daily life...

Yes, I can say I'm anxious and even scared about the physical. If they do discover something, they can tell at the first instance, and will need to take samples. And I should know within two weeks...

Right now, my bowels are grumbling again, and my behind feels like it's about to erupt again!

Food glorious food...

Just had my last bowl of clear soup at the hospital, and a bottle of orange juice. For the next 20hours or so I cannot eat or drink anything except water.

I have to take a sodium solution to flush out everything in my intestines and stomach. The last two days I've had to limit myself to a low fibre diet, meaning no dark veggies and vegetable stalks, no dairy, only steamed egg, low grease foods and simple rice or noodles. To be honest, the doctor told me to go on a "bland diet", but my diet is already pretty bland, so I've not needed to make any big changes and forgo anything, such as red meat. Today I had to switch to a liquid diet, and the whole day I've been with mum I've been buying clear soup and juices to fill myself up.

I do feel peckish, and a little weak and tired, and for some reason am craving fried junk food and a burger! I'll give to wait till tomorrow to really indulge.

It's times like this that you appreciate what most of us take for granted: eating and drinking at will, and not thinking too much about what we put into our bodies and what we put our bodies through. Especially seeing mum being unable to eat and being so frail from not eating, I have to count my blessings and take much better care of my body and myself...

I cannot fall ill, I cannot fall ill...

Getting better...?

I waited next to mum's bed in front of one of the ultrasound rooms. Before long, another hospital bed was wheeled and parked next to mum's.

"You will be better again! They are going to take a scan and see what medicine they can give you. They will cure you and you can get up and do everything you want to again..."

On the bed next to mum's was an old lady, probably in the late sixties or seventies. Hurdled over her, three other middle aged ladies, perhaps her relatives, perhaps her friends. The one who spoke held onto the patient's hand tightly.

"Do you feel pain in your stomach? The doctor will cure you. The doctor will give you medicine to take the pain away..." The lady had a forlorn expression on her face as she spoke. It was as if she did not believe what she was saying. The other two ladies nodded quietly, but even their facial expressions betrayed their discomfort with it all. The one who spoke looked up temporally and saw me looking at then. I flashed her a forced smile. She returned with another forced smile. In the forced nature of our smiles was an understanding, a silent understanding among caregivers. Sometimes you must lie. Sometimes you just must lie and tell yourself and the one you are caring that things will get better. It's easier, ironically it just is.

The lady lying in bed lifted her head up. Her nose was plugged to an oxygen tube, her eyes dazed and confused. Her face was expressionless, lost. Her mind was gone, that much I could tell. Did she understand what the other lady said to her, even though they were not exactly true? Even though the words were spoken with sincerity, the reality is often much cruder and crueller. Did she feel pain, did she know perhaps her time had come, slowly but surely had come?

"You will get better! You will recover and be your old self again..." the lady standing over the patient said before the doctor wheeled her into the imagining room and out of sight.

I looked at the lady disappear, quietly wished her peace and no suffering...

I turned to mum, and from her expression she saw and heard the entire episode too. I held her hand and told her "You will get better! You will recover." She looked at me and knew I was mocking death, mocking illness...

Mock, mock... Sometimes all you can do is mock.

At ER



I slept badly, kept on hearing mum wake up and rustle with plastic bags, a sound that she's either vomiting or coughing out phlegm. Or so it sounded like that, or perhaps I'm just paranoid now...

I woke up early today because I have a thorough physical due tomorrow and must today start a strict regime of liquid diet. Though the bowel pains have more or less subsided, I still need to check my colon and stomach to see if there are risks of cancer developing.

I squeeze some apples and carrots, and added a bit of ginger too. It tasted good, at least to me, and I saved a cup for mum. She drank a bit, and said she didn't feel like drinking more. Within a few minutes, she threw up again. She's been having constipation, and said since last night been feeling very dizzy (literally, "seeing stars..."). Time to head to ER.



The doctor attended to her within minutes of arriving, and asked various questions. A blood test and xray was done, and results came back within half an hour.



Inflamed pancreas, the doctor assessed, otherwise all other signs are normal. It's not because of alcohol intake, or cholesterol levels, I don't think. The only possible reason is stones collecting in the pancreas. Or, as I checked online, there may be a rupture in the pancreatic duct, causing enzymes necessary to break down proteins and lipids to leak into the stomach, and causing her an upset stomach (vomiting..) We cannot know until further tests are conducted, and the doctor suggested an ultrasound. She will still need to have an endoscopy and perhaps even colonoscopy done to see if there are abnormalities, but the earliest either of those can be done is tomorrow. The other problem is that the invasive look at mum's bowels at this hospital is conducted using the traditional method, ie without anaesthesia. If she wants to arrange for anaesthesia, then indeed she would have to wait for two weeks, as the doctor two days ago planned. But she cannot wait two weeks. She just cannot after vomiting on and off for a month and vomiting daily and severely for the three two days...

Mum is very scared of the endoscopy without local anaesthesia, for the last time she did it, she gagged so uncomfortably and felt like her stomach was going to come out... But she must do the examination as soon as possible, for she is vomiting so much that she's really losing weight and becoming dehydrated. It's very worrying.

Back to the hospital again, and mum is now lying next to me, having an IV drip to provide her with much needed nutrients. I rushed home quickly to get her a blanket and her memory cushion and back rest, so she can rest better.

It's very hectic here, with so many patients lining the walls of corridors, so many nurses and doctors rushing back and forth, and so many relatives waiting in the lounge. Mum told me that day, on 26 December, when she checked herself into ER, she was by herself. She could barely walk and had to be assisted by a hospital staff while they did scans and tests on her... At least I am here with her this time..
I am here with her... But I myself feel weak and faint, partly from not eating well over the past few days, and partly because of the bad sleep last night.

Mum is sleeping now , after I gave her a massage of her back and arms. It feels like back in January, when I would spend hours by her side and take care of her needs.

Only, how long will mum have to stay in hospital this time...?





26 February 2012

Very severe

The day started off well. I heard mum walk around in the living room at four in the morning, and I immediately woke up, thinking perhaps something was wrong. She was just hungry, she said.

"Say something again!" I said. I may have misheard.

She spoke, and I could swear her voice sounded like its old self. No more, or at least much, much less of that raspy witch-like voice. Delighted, we both went back to bed again until close to nine or so.

We had a nice breakfast, walked around a bit, and then went out to lunch. I was somewhat glad that mum did not vomit, at least not a lot (so she still did, but a  mouthful, which seemed like an improvement). After lunch, I insisted that we go for a long walk, as the weather was clearing up (if only temporarily before it began to pour again...). We walked by the little creek, the same one we often walk along after coming out of the hospital with a heavy heart. This time of the year, as Winter sheds and dons on Spring, the banks are lined with beautiful blossoming trees. Reddish pink in colour, some already in full bloom, others yet to unleash their beauty that has been refuging from the cold of Winter. And when they are all in bloom, it delights the eyes and senses with such brightness, such life!

Mum, and steadily so, could not walk more than a hundred or so metres without feeling like her lower back is about to tear open. I massaged her and struck her shoulders to make her feel more comfortable, until we eventually found a bench to sit on. And mum started to reminisce... How just last year, she would walk these banks without a problem... And just a few  years ago, when she used to live in the old house, she would come jogging here at dawn... Those are days gone by, and forever gone...

Late afternoon, mum's youngest brother came for a surprise visit. "I had nothing to do," he always says, but in truth, he cares deeply for mum's wellbeing, and has been there often when mum needed help. He was the one who made the payment for her surgery upfront, for it was such a large sum of money, and till this day he keeps on saying "Later, later... Not to worry..." whenever mum talks about paying it back.

We had a quiet afternoon at home. Mum sat in her comfortable lean back chair, while my uncle and I gathered around her. We chatted, about mum's condition, about her plans for the future. As we did so, pictures sprang up on mum's screensaver... so many pictures of so many places that mum has been to. Michellin star restaurants, railway journeys, blue, blue lakes, snow-capped mountains and glaciers, misty ocean playgrounds... "I have been so lucky," mum said to us.

"You still are very lucky! You can go to these places again!" my uncle and I said. She can, but does she has the will to? Can she muster the courage and  the energy to just forget about everything, about her worries, about treatment, and most of all, forget that there is this terrible illness inside of her, and just go travel her? That is the biggest question. She must have the will, she must have the courage and push herself, tell herself, "I can, I can..."

Is it too easy for me, for an outsider, to say "You can if you want to?" Is it?

Around seven or so, we went out on our way to go eat. I walked a few steps ahead to let younger brother and older sister bond. But moments later I heard my uncle call my name. I turned around and saw mum stand by a pillar, next to a sewage drain. I immediately understood why. I immediately went to her and handed her the bag containing plastic bags, tissues and bottled water that has become unmissible on every excursion, even short ones around the block, outdoors.

Within seconds of me handing her the bag, mum crouched down and began to vomit. Again, like a river, the vomit poured out. Again, and again. Three times. I extended my hand to pat mum, but my uncle's got there first, so I let him comfort mum this time. I could see on his face was the look of worry, look of concern and helplessness and pity. In a way, I was 'glad' my uncle saw it; not that it is a pretty sight, not that it is a great thing that mum was vomiting severely for the third, perhaps four day in a row. 'Glad' because my uncle saw what only I have been able to see, only I have alone been forced to see and deal with so painfully. I was 'glad', but someone could see my pain, share my pain and worry.

We must go to the emergency room. No more delays...