24 March 2012

Three sisters

Mum's second sister came up from the south, from the hometown where they were born and grew up together. Together with mum's youngest sister, who has been staying with us for almost a week, it was a beautiful reunion of the three sisters. 

I was embarrassed to be in the room, and said I would leave, even when they told me not to. I wanted to give the sisters time to bond and reminisce, time to talk and catch up. I imagine them once as little girls who grew up in a small town, who did everything together, who have gone through so much together growing up. How they must be feel now they have grown old(er), now that they have led such separate lives leaving home, how having raised different families and watched their children leave home to come together in one room years and years later as one of them is slowly, slowly leaving...

When my second aunt first came into the room  her eyes were a bit moist and red. Perhaps mum third aunt had told her pretty much everything. But nothing can prepare you for the real image, for the reality of seeing someone you grew up with lie there in a foetal position looking so sick, looking so thin, looking so frail... I stood around a little, and watched as they interacted and chatted. There was an extremely touching scene as my aunts sat around mum's hospital bed, while I sat next to her on her bed and massaged her feet. 

 The distance between their hometown of Chiayi and Taipei is only about two hundred or so km, and yet typical of Taiwanese warmth and hospitality, all the more because we are family, there were a lot of "greeting gifts". My second  aunt unpacked her suitcase (yes, a suitcase full!) of goodies, including fresh guavas, wax apples, egg rolls, cookies, and plums from their hometown. It really weren't the goodies that mattered, for all these things you could buy in the big city. But the thought, the thought that my aunt thought of bringing all the things that mum likes to eat, was touching to the heart.

"You didn't have to come so far..." mum said at one point weakly, "You must taken such an early train to get here..." My second aunt just smiled. I quickly joked: "Just shows how important you are!" which made everyone agree with laughter.

Later, they were joined by mum's oldest brother, who is staying in a ward right on the same floor, and also by mum's second (step)brother, who dropped by for a visit. Mum's youngest brother visited yesterday already, and he stayed for quite a number of hours. for out of the siblings, they seem to have the closest relationship.

So over two days the family has come from all over the place to rally around mum, to encourage her, to tell her to open up and not think too much. I have spoken to everyone, at times needing to fill in on the bits of information that mum may not be too willing to talk about or think about. I know it all is very heavy on everyone, but I try to tell it as calmly and clearly as I can, I try to tell them things are the way they are.

And I thank them, thank them again and again, for all the time and effort they put in to come and see mum, even though they 'chastise' me for thanking them for all the help they offer in so many ways. I know they are family, closer in some ways and in different ways that I cannot imagine, for they shared with mum a part of her life when I was not even around.

But I am still so ever grateful for their care, for showing mum their care and love, for being there to make her feel less alone, to make her feel that her life, what was, what is, and what will be, is worth every breath, is worth every day, every moment she is still with us...





Dream

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I was paralysed and could barely move. The inability to move was frightening, frustrating and and so very painful. It felt like I was a prisoner inside a body I could not control, I no longer owned.

There was a slow moving zombie in the house, anywhere I went , mum was trailing behind. The zombie followed wherever I went, and was trying to catch me, trying to kill me. I tried to avoid it, to escape, and at time even look the zombie straight in the face. I think I even tried to kill it somehow, but I could not. The zombie just kept on coming after me, just kept on following me wherever I went.

Mum was not in the dream. But I knew it was a dream about her. About her body which is failing rapidly and control over which is being lost. About a powerful demon (zombie....) which cannot be killed and yet stalks you wherever you went...

It was such a frightening dream which woke me up within an hour or two of falling asleep.



The apple of my eye

I've been longing to watch this movie for a while, ever since it came out last year. It received great reviews and broke box office records for a locally produced movie. But I was afraid to watch it because of fears it may trigger a flood of emotions and tears caused by my breakup with my ex.

Today was the tv premier and I watched it together with mum in the comfort of her new private suite. Even mum has been wanting to watch the movie, for it is based on a novel which beautifully captures the romance of high school puppy love back in the day. There is a reason that the movie (and novel) captivated the nation's audience, for it is a trip down memory lane to those pubescent days when love and intimacy felt all so taboo yet exciting.

In mandarin, the title is "The girl we were all after in those years...", about a bunch of adolescents who all have a crush and all want to go after the same girl. The main characters are in a love-hate relationship, and the girl plays hard to get even though she too likes the boy a lot. As she explained to him one day, many years after their high school years, the initial romance and chase is the most exciting... she never really reciprocated earlier because she was afraid that the romance would die soon after the chase is over...

Those words spoke to me, for for a long time I played hard to get with my ex, even though deep down I care about him, perhaps even love him without realising it. Had I been clearer, had I not been playing games and playing hard to get, perhaps there would not be so much heartbreak, perhaps we would not become so estranged, and perhaps as I am dealing with my mum's slow decline, I would have a comfortable friend and lover I could feel free to turn to at any time.

But what never was will never be, as I once wrote to my ex. What is the point of talking and regretting over what ifs or ponder what would have happened?
In the movie, fate twists and turns and only time can tell whether two people are meant to be together, whether two people and their love for one another ia true and lasting. Is that not the way it is with my ex and me? If he truly has found his love, what else can I do but let him go, as I have done already, and wish him the best, however much that may hurt? What else can I do but just withdraw from his life and let the new person take care of my ex's needs?

As the credits came on, my eyes were a little moist and my heart was singing in the beauty and warmth of the romance portrayed by the story. Love that could not be, love that so strong an mutual and lasting... Is that not the most beautiful kind of love?

Naturally mind drifted to my ex.... I truly genuinely wish he is happy with the person he is now, and I have by making distance and deliberately not contacting him, maintained my distance so he can resolve me and move on. That seems to be his wish, and he has his wish. Whether or not that wish coincides with me does not matter. If you truly care about someone, you let him go, you let him be free to go after his heart's true desires. True love is when you can smile and be happy that the one you love has found someone and is well taken care of.

But truth be told... And I will write this here even though I know one day he will read this and know exactly how I feel. I am not afraid to express how I feel, for who should be ashamed of their live for someone? Who can ever be afraid to say out loud how much you care about someone and love someone still, despite a lot of ugliness and hurt (both ways) between us in the recent year and recent months?

Yes, as a dreamer and a romantic, I imagine in my head that one day when we meet again, the passion, the fire that was so prematurely dimmed will be relit. How beautiful that would be if it is ever to become reality! How happy I would be, as I believe he would be too, if what he tells me about how deeply he loves me is true and from his heart.

I dream that he will again do something to move me, to touch me, do something so special for me that I will again be in his life, and he in mine...

Only time will tell whether. Only time will bring us together or make us drift apart, for it is meant to be what it is supposed to be.

Journey's end

Is there anything one could wish for than a beautiful ending?

Is there anything more beautiful than a dignified end surrounded by loved ones?

A whole lifetime of life... how do you make you that it does not become overshadowed by unbearable pain and untold suffering?

Those are the questions I have been asking myself, and asking others around mum. With mum's life signs fading, with her health and body gradually descending into a sorry and uncontrollable state of dilapidation, there are few things we as loved ones can manage or seek to change. But we can at least plan for an outcome that will hopefully defy all convention, and that will turn a solemn and sad final act into an experience, into a process, of beauty and dignity.

This is where the objectives of Operation Eternal Happiness and Operation Reunion converge...

Thought

i am killing my mother...

23 March 2012

NJ

I thought I heard wrong when my aunts told me after I came back from a two hour rest at home in the afternoon. "They'll have to insert a tube into her," they said. I immediately thought of patients who are close to the end of life, and who must have a tube inserted into their noses to ensure feeding and to sustain life. It was a terrible image, and I could not imagine mum like that...

The doctor came the next morning, and briefly explained the details. Mum, as ever, was hesitant to ask questions, so I asked most of the questions. The blockage in the small intestines is such that operation will be a difficult task. And the operation  may not be worth it on balance of the risks and benefits to be derived. The doctor did not mention it, but hinted that the cancer may be already too advanced that if you are to operate and create a bypass, it may fail as soon as the cancer spreads and grows. So the best option is a socalled "NJ tube" to solve mum's inability to eat. It is the most pressing problem that must be solved, for being unable to eat is draining her remaining sources of energy.

I later did some research of my own online, and the NJ tube is inserted through the nose and pushed deep, deep inside into a section of the intestines called jujenum, hence the name nasojujenum (NJ) tube (nose to the jujenum). "Food", only in liquid form and cannot be too thick of have any bits inside, must be pushed through the tube with a syringe of some sorts, and the 'food' will directly enter the small intestines to be absorbed.

It is  a very sickening idea for some reason, and I am not happy with the solution. But it is the best solution, and for now the only solution. The alternative is to let mum waste away and deplete her reserves, of which there may not be much left...

"Where's the dignity in this...?" mum kept on asking. It was a rhetorical question, but despite the doctor's assurance that there are many who are fed through this method, mum seems very distraught by the idea that for the rest of her natural life she may have to walk around with a tube hanging out of one of her nostrils... How this will impact her already shattered confidence! How this will cause her to withdraw even more and be even less willing to meet people and friends!

Indeed, where is the dignity is that?


Dream

Does anything have to make sense? Do images in my mind need to connect? Am I insane?

Falling. Falling. Falling. Bed. Rush of water. Mum. Pain. Anger. Lump of cells. Blood. More Blood. Crying. Needles. Frowning face. Agony. Pain. Stomach grumbling. Doctors. Hospital bed. Empty. Empty. Machine Beeping. Beeping. Beeping...

Twist in the tale

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"I won't live to see you succeed..." mum said, which attracted a scolding from my aunt.

I looked at mum, and there was an emptiness in her eyes, a blank expression on her face. In her eyes there was a hollow void, filled with regret, perhaps, over things that have not happened yet, over things nobody has any way of knowing how they will happen. I laughed and joked that I will go study hard now and quickly start my career as a successful lawyer! "So you can still see me succeed!"

Though I was laughing and speaking in a light tone, it was not entirely a joke. I know one day, perhaps not tomorrow, perhaps not next year, I will be what I want to be, and I will find a calling in life, and live and work with passion. But right now, my calling is being at mum's side on this difficult journey. Success is not necessarily always measured by the number of years you have worked or the number of degrees you have earned.

I was not here when the doctor visited today and broke the news, so everything that follows is based on second hand information. My aunt (mum's brother's wife) told me that doctor's assessment goes against a bypass surgery to reroute mum's duodenum to the stomach (bypassing the tumour growing there...). It probably won't be effective, for the food may just quickly pass through the body and leave through the intestines before being absorbed. Why go through pain and recovery of a major operation if that may be the outcome?

An alternative may be to surgically insert a feeding tube into the intestines and feed her liquids from now on. The tumour cannot be removed, for it has become advanced and is spreading to even the pancreas, and the large and small intestines (according to my aunt).

I still need to speak to the surgeon myself and hear the diagnosis and proposed plan of treatment from him and his team. But it sounds as if there are basically two choices: to proceed with a procedure and install and feeding tube to minimally sustain mum's life until cancer eventually takes her away, or to just go home and let things be. The ultimate outcome will be the same in any course of action: death. But one may be less torturous (I'm not sure) and less unpredictable (again I'm not sure... Who is ever certain with death?) than the other.

As far as I know, mum's initial reaction to the feeding tube is that it robs her of dignity of life, and she feels ashamed of having something installed in her nostril on a permanent basis... And if she is from now on to be fed through a tube, it is just to sustain her life for a certain period of time, and there is no guarantee that she will have any strength to continue to fight the spread of cancer. What could be a worse form of dying than cancer destroying every single organ in your body and consciously watching everything shut down one by one? Mum's body may be weak, but her mind is still clear and strong, and her pride I feel will be so tortured and her dignity so shamed if she were to rot away and be eaten from the inside by cancer...

And the alternative, of no treatment... Of letting mum "starve" in a way, is that better? How painful is it to starve? What are the complications of going hungry and not getting enough nutrients for the body to work, as she has been experiencing for the last three weeks? Is this "better" and less painful than the pain of cancer eating your body and soul?

I do not know, I simply do not know... I know too little about the medical facts and about the consequences of either courses of action to know what is better or what is best! All I know is I know mum would want the least painful option, one that would not prolong her suffering for much longer, for she is simply too tired, so very, very tired....

And I am getting tired too. Tired of set backs, tired of the unknowns and twists and turns, and so very afraid that I may have to shoulder a great responsibility that of shaping a decision that may heavily affect mum's course of life and cause her unnecessary prolonged pain and suffering...

I am again so very afraid...







Operation Mumories


When I was at the temple today, I saw a portrait of a middle aged lady at the front of an altar. In front of the portrait was an urn, and before the urn was a great offering of food and fruits and paper money.

Momentarily, my eyes played tricks on me and I thought I saw mum in the portrait. When is it my turn to stand there again and hold an incense stick and bow before mum's portrait? How will I be feeling? Who will be with me to comfort me? How grim the thoughts....! but death has been on my mind a lot these days, perhaps too much!

The idea crossed my mind before, and I have at times imagined it, thought about it, and let my imagination run wild as I daydream about it... "It" being mum's final farewell.

I don't want it to be a sad and solemn affair. I want it to be a celebration of mum's life, with pictures and sounds and songs. My brother's mother-in-law and her sisters and I got talking. They know of this lady who passed away (also cancer...) and her funeral was not at all sad. It was very touching, very beautiful and dignified. The children hosted the event, instead of having a ceremony master who did all the talking using a very impersonal and scripted speech (as was the case with my dad...). The lady's funeral was the kind of farewell I have been dreaming of!

I know I can do a good job and put together a very touching "show". I did it with my brother's wedding, and recently I put together a bunch of pictures in a scrapbook to celebrate my ex's life and our relationship together. I know they both touched people, and I hope I can also do the same with mum's memories.

But will people be receptive to it my idea? The lady who passed away actually worked on the project herself with her children, for towards the end she came to embrace death and also knew when it was time she wanted to "go" beautifully and memorably. Would mum be as welcoming of the idea? I am afraid if I mention something like this she may get the wrong idea that I'm plotting her death and planning for her funeral already.

And I'm not sure whether brother and others who have been important in mum's life will warm up to an "unconventional" send off, for I need their support and input if I am going to pull this "show" off.

Just because I like the idea, just because I see my own funeral as a last(ing) opportunity to touch people's hearts and to inspire people with, does not mean everyone else shares that open-mindedness to death and dying...

For now, this idea is still a work in progress I label "Operation Mumories" (yes, there are many operations ongoing, and I seem to be coming up with them to give myself something to do and something to distract from everything else...) . It will be an attempt to capture mum's life and experiences, mum's sacrifices and devotion, mum's love and care and remind people of who she is and why we care and love her.

Whether this crazy idea will one day become realised remains yet to be seen...

22 March 2012

Letter to ancestors

I went into the store and was embarrassed to ask for what I wanted. "A pack of Marlboro Light..."
I was embarrassed to be associated with the terrible stigma (at least according to me...) of "smoker". I actually wanted to tell the convenience store kid "It's not for me!" But probably the guy will think of me strange. Wouldn't you when someone comes to buy a pack of cigarettes at eleven in the evening and say it's not for him?

It really wasn't for me, but for my ancestors and for my dad. In around two weeks is Tombsweeping Festival, the day when we commemorate the deceased (there are a number of these days throughout the lunar calendar...). As we want to beat the crowds (it gets really crazy and crowded...), I asked my sister-in-law to come up with my nephew, and tomorrow we'll go to dad's resting place early in the morning. My aunt helped to buy a lot of prepared dishes, so all I have to do is cook some rice and pack everything in the morning, and I'd be ready to leave.

Besides the packet of cigarettes (really, not for me!!), I included a letter I handwrote. A letter to my ancestors and dad asking for their forgiveness that mum cannot be there again (she could not be there on Lunar New Year's Eve, because she just left the hospital) as she is now in hospital again. I'm sure they would not mind, but still I wanted to write to them and tell them that from now on, mum probably cannot prepare elaborate feasts and offerings on special occasions. She is simply too frail and too ill to get up and have to cook and travel an hour and a half away and perform a whole ceremony of offerings. In my letter, I wrote as long as I live, I will take over the task of making offerings, and I promise to do that at least twice a year, wherever I may be. (In fact, I have been doing that for the last two years, so I hope my ancestors will be used to my cooking!)

In my letter I also asked for the ancestors' protection, something I will again pray for tomorrow when I am standing before the ancestral plaque. "Take care of mum, may her remaining days be happy and free from bodily and mental pains... And if she should go, dad please guide her and allow her to steadily, steadily leave this world..."

How desperate I have become... But at a time when there is nothing else to cling onto, when all hope and prayer to some supreme force in the universe seem senseless, traditions and prayers to those long gone are all I have.

Words of comfort

What would you do to prove how much you love someone?

How much of yourself would you give when there may not be much time left?

How brave and patient can you be?

These are questions that fill my mind during my waking moments, and which permeate my dreams when I close my eyes to rest my tired body and try to calm my sad, sad soul these days.

A friend of mine, a "soulmate" of sorts as we have undergone similar experiences and fears with respects to losing our mums to cancer, wrote me a long email today. She read my recent blog entries, and said she felt/feels what I feel now. That deep sense of fear, deep sense of frustration and panic, the longing to hide from the rest of the world, and the urge to cry and cry... She went through all that, she is going through much of that still, almost a year after her mum left this world...

I was touched, very touched, by her words and encouragements. They are a welcome source of support from afar at a time when I need it most, at a time when I am facing perhaps the most challenging test of my life (yet?), of anyone's life. Really, what could be more frightening, more traumatising, more unbearable than losing the one person in your life who has been there since your birth?

My friend knows how I feel, and I mean no disrespect by sharing her words to me here (sorry, I know you wrote these words privately to me, but they are very beautifully written and very meaningful...). Her words come from the heart, from the brave and partly broken heart of another who has had to live and fight alongside a cancer warrior. Her words best describe themselves:

"... in the end, this kind of situation is overwhelming. [...] But has it been planned, and so has it to be. Try to provide your mum with peace, and to expulse your pain whenever you can. I wish I could help more. [...]

There is no magic recipe how to handle the situation, in fact. You will suffer. You will cry. You will hate. You will criticize yourself.

But in the end, you will have to admit you have always done what was expected from you, and even more. You gave yourself to your mum's condition. This is an amazing proof of devotion to your mum, and a precious gift you made her.

Cry, write, shout, pray, as the illness is a vicious seed that comes into the human body and spreads relentlessly.
Be sure that your parents are incredibly proud to have a son like you, your friends are proud and amazed by the friend you are, and that you will always have a friend to support and encourage you."

On mum being angry and irritable, especially as her illness progresses and as the chances of a full recovery of health and life seen slim, my friend had this to say:

"I understood she had nothing against me, but that this was more [...] coming from the deep of her soul, trying to say "I love you so much, and I am sorry, I am sorry I have to go. Do not blame me for that. I am scared too. Keep being here for me."

An empty elevator on the 11th floor...
There is a reason why my blog is updated often daily these days. Strangely, and to put it crudely, death is fascinating, inspirational, and experiencing illness (as a bystander...) draws out dark energies of negativity as well as positive energies of creativity I have rarely experienced before. And instead of breaking down and crying and lamenting my fate (I do it too sometimes, I know...), I have found I can use that time and energy to write, write, write. For myself, for mum, and for the world to see and share.

Death, the slow and forceful approach of it, makes you realise again and again "life is only so much!" How sad it is that so many of us live with regret, so many of us live with hate and anger brewing in our hearts (and I am no less innocent of these ills...)! When all is said and done, what could be worse than to let the chance to love and care for someone you love deeply slip away? What could be worse than turning away from someone you love at a time of despair and need? That's why I am here, gritting my teeth if I must, crying inside if I can, but standing by my mother's side as she prepares for journey's end.

My blog is my dearest source of outlet these days, a dark hole where I can vent all my frustrations and anger and turn to and not be afraid of rejection. There are strong emotions I cannot express in front of my mum, there are feelings I cannot talk to anyone about. But I can write about them, right here, to share with the world and share with unexpected readers who may be facing similar difficulties and having similar feelings.

I know there will be times when I am so consumed by despair I want to hide and hide... I know there will be times when I will quietly cry and wonder why this is all happening... There are times when I wonder why there is no one next to me who can hold me, kiss me and tell me softly "It'll be all alright..."

But I am brave, I am strong, I have been through so much over the past few years. And I can get through this, one day at a time...





Visit

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My sister-in-law and her family took an early train from another part of the country to come see mum. My brother's mother-in-law even took some time off work to come up north when she heard from my sister-in-law that mum is very thin and sickly.

It was a brief visit, less than an hour it lasted, but it brought many smiles to mum's face, even though she was very tired. My sister-in-law's family (including her mum and her two aunts) came and were very encouraging. None of that "you will get better" speech (which at times may be very disparaging and so fake to hear when everyone knows things may not get better....). They were there for just the right amount of time, and said just the right amount of words of encouragement and hope. They kept on telling mum not to think too much, telling mum that she is very brave and that she has done so much in life, least of all raised two fine children to be good people. What else does one want out of life? I squeezed mum's arms and winked at her, and gave her that "See, told you so" look.

The greatest source of mum's happiness and comfort, my nephew, was there too. He smiled when he saw mum, and made mum smile so much back, smile so much more than she has smiled in a long time. A true, lasting smile, or at least as lasting as my nephew was around, which was a priceless distraction from her pains and suffering.

There was a moment when my nephew's milk bottle was on mum's hospital bed. It was a bottle, just like the one that was hanging upside up in midair and pumping liquid nutrition into mum's veins. What crossed my mind, though admittedly it was a grim thought, was the contrast between beginning of life and the end of life... the stark, cruel, yet beautiful contrast between a (relatively) newborn and healthy child who is full of life and an ill and sad woman whose life is draining out of her body... She was once young and lively, and he will one day grow old and get ill too. The difference is in the timing, and somehow in this great big universe, my nephew and mum's lives have miraculously and preciously been destined to coincide.

My nephew jumped around and giggled, making everyone laugh and was of course the centre of much conversation. He has grown a lot, and grows ever more endearing that I am really falling for him and missing him when he is not around... So powerful the lure of a child's magical innocence and untainted beauty!

I played with him a bit, hugged him so tightly and rubbed my cheeks against his warm face. Temporarily I closed my eyes and quietly, from the bottom of my heart: "Thank you for making mum so happy... Thank you for giving us hope and strength.... Thank you for making me feel so loved..." He just looked at me an drooled and with his cute little fingers pulled at my face and of hair.

As intended, and as part of "Operation Reunion", my family was again brought together (though brother was sadly missing...) to make memorable memories. Memories that one day, when we look back, when some of us may no longer be around, can make us all happily reminisce with warmth in our hearts and smiles on our faces. And, as I wished, and I am sure that it is a wish mum shares though never really expressed, mum had the priceless opportunity to spend even more moments with her grandson, to see him laugh, to see him jump, to see him grow, and to see that he is surrounded and showered with love from so many who care about him.

All this is so very beautiful, so very, very touching...

Everything is empty...

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Even the greatest love will fade,
Even the closest of friends must separate one day,
Even the strongest body and most resolute will cannot escape the fate of death.

And the heart will feel, the heart will fear,
The heart will hurt, the heart will ache,
The heart will cry, and long, and suffer as the waves of emotions lash against the shores of human experiences.
Only a calm, contented heart will weather the fiercest of storms and come out unscathed.

Everything is empty,
Nothing is real.
Everything is an illusion,
Nothing is mine to own or mine to cling onto.

Be prepared,
Prepared to separate from that which is dearest to your heart and not flinch.

21 March 2012

Assessment

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The doctor came in just as I was stirring from my sleep. He came with an entourage of younger doctors and didn't say much. But he was kind, caring and soft spoken when he did speak. Contrary to what he said to us about not being here this week, he was here after all. I guess he only said it to put us off waiting for him and being seen by him, but in the end mum's desperate plea moved him.

The surgeon lifted mum's clothes to feel mum's belly. I felt it before, and there is clearly a hard lump there, which with my rudimentary knowledge of medicine I can only imagine is the culprit tumour that has caused all this vomiting and mum's dramatic weight loss. The surgeon said he could operate on mum as soon as tomorrow.

"Tomorrow?" both mum and I were surprised, but the surgeon said her condition is good enough to operate, and the surgery shouldn't be too difficult. It has to be done soon though, otherwise mum will continue to get dangerously thinner and thinner.
A few moments later, after hearing the medical team converse in the corridor, the surgeon came back to say perhaps it's best to wait a bit, while in the mean time they can further assess mum's condition and review scans that were taken to better plan the surgery. They should have a "game plan" soon.

Mum's spirit immediately brightened up after the surgeon paid her a visit. It is the kind of confidence and hope she needs to undergo another surgery and to have a speedy recovery. Other than being physically fit to operate, the patient should have faith in the medical team and faith in getting better. And with this surgeon, mum has it. Perhaps, if mum does not get irreparably weak, it is all worth the long wait.

Perhaps, it will be worth all the wait and pain of all that vomiting, and all those sleepless nights worrying and wondering whether mum will make it...

Dream

"What am I doing here at the hospital?"
"How long have I been here already, and how much longer?"
" Where was everyone else?"

Those questions haunted me in my dream, in which I saw myself walk around the corridors of the very hospital I am in now. I only managed to sleep two hours or so before mum woke me up from my dream world. But how much more different was it from the real world? Do I not have the same thoughts, do I not see the same brightly lit and lifeless corridors? Do I not have the same questions?

Mum's voice woke me up. She needed help getting up to use the washroom, and I immediately sat up. I held onto her frail body, and lifted her up. I followed behind her and her IV drip-on-wheels. My head was hurting and spinning, images of my dreams were just beginning to gradually fade like images of an aged, yellowing photograph...

I stood outside the washroom door, looked out the window at the silhouette of mountains at night. "Back again... Back here again..." I thought I left the hospital towards the end of January for good... I thought I left the hospital in early March for good, but this visit and this stay may be for a good while. Two weeks, maybe more, depending on the outcome of the impending surgery. Depending on how severe mum's condition is and whether she can recover from yet another invasive procedure, the second one in the span of just three months. Fear and loneliness and death consumed me and swallowed me whole.

I feel like a prisoner of circumstances, a prisoner of dreams and traumatising thoughts. A prisoner waiting for release and liberation is at the mercy of the parole board of life and fate...

And what of mum? A prisoner of her own fragile, painful, deteriorating body, which cannot die quickly enough...?

Trip abroad

My cousin has been studying English for over ten years, and it has always been an ambition of hers to go abroad to an English speaking country. That is her ambition, and her dream is actually to one day move to abroad to work as a nurse.

She has been having a lot of difficulty realising her dream, especially financial troubles, and seeing me travel so much, she is often envious of me. So I've silently vowed to help her however I can.

An uncle of our, who has always been very kind and generous, approached me one day and together we plotted something. He would pay for my cousin's airfare, and I could help to book her flights.

We spent an afternoon looking for fares online, an endeavour which fascinated her, and opened her eyes to possibilities. I had my uncle's budget in mind, and originally my cousin only wanted to go to two places in the US (California and Florida, both where she has relatives), I managed to squeeze in a little side trip to BC, Canada to visit our aunt and cousins who live in vancouver. I paid a little to make up for the difference, but I knew how much she's been dreaming about going abroad, so I wanted to give her a full and exciting itinerary. Actually at one point, when I was planning to head back to Canada around this time, I even said she can come visit me in eastern Canada. But that unfortunately is not happening.

My cousin is due to leave tomorrow morning, and this afternoon, using the four hour break I had, I went through the whole flying procedure with her, from check-in to boarding, to immigration and customs (I even told her all about frequent flyer programmed, showed her the benefits of the "Mile High Club" as a joke...)
She was overwhelmed at first, but still very excited. I even gave her a sheet with "instructions" based on a "guide to flying" I produced for my younger cousin (who never managed to come visit me...).

She was very appreciative. But when she was not looking, I slipped a little card in her bag, a "have a safe trip" card with a touching message, But also all the Canadian money I had with me. "Open this card only when you board the plane!!" I told her. I smile at the very thought of this little surprise... Little surprises like this make me so happy, and that is a welcome change of feeling different from what I feel at the hospital.

Why am I doing all this for my cousin? Because I care about her, and genuinely hope she can benefit from this first experience abroad and that it'll help her open her eyes and mind. I've had that privilege given to me in my life, at an early stage. And if I could offer some pointers and tips on travelling and going abroad, why not?
And my cousin has been very supportive and helpful in different ways throughout this period I have been here (despite her previously homophobic views...), and in a way this is my little way of saying "thank you".


Dizziness

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Even just from standing up, I get very dizzy these days. So dizzy for an instance or two I "black out" and can't see a thing until the blood rushes to my eyes. It can be very dangerous, something I warm mum must be wary of when she stands up from lying down for too long. But I myself must heed the warning too, because I can easily black out and faint and hit something, which could prove fatal...

I've had this "black out" problem before, and I suspect it's related to my weak heart (a medical condition I like to call: brokenaraus heartus). My heart pumps very slowly and sometimes can't get enough blood to parts of the body in time, made worse as I'm somewhat tall and skinny.

But my diet has also suffered a lot these days, especially since mum began vomiting. Rather than cook and eat more health-consciously in, for the sake of convenience and also to avoid munching in front of mum (who sadly can't eat...), I go out for almost every single meal. Normally I have a soup noodle with some vegetables, sometimes rice with some small side dishes. But recently just been craving for fried (read: unhealthy!) foods like burgers and fried chicken. For some reason my (semi-)vegetarianism has increasingly gone out the window as I deal with the extremely stressful and demanding situation with mum's decline...

So I've not been having the most balanced of diets, which may aggravate my low blood pressure. The poor quality sleep and accumulated exhaustion just adds to the causes of my dizziness (and also stomach cramps, but that is another story...)

I try to take care of myself, as much as I can. But really, I dare anyone to find themselves in a situation I am in now and still have an appetite to eat, and still have an appetite for good quality sleep.

I know, I know, I am pushing the limit and in the long run will make myself ill, which will do no good to anyone. But I am trying, really trying to take care of another and trying not to forget to take care of myself.

20 March 2012

Curl up...

There are so many days and moments I just want to curl up and hide...

And I imagine I can curl up in a little corner of the world and that there is someone intimate and loving at my side...

Blood

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It feels so strange to wake up in the hospital again, to wake up to the sound of nurses in the corridor and chatter of patients and relatives.

Mum was visibly very weak and tired this morning she could barely muster the energy to speak. In preparation for a blood test, she could not drink or eat anything since midnight, so she was starving and even weaker. I strain to hear her when she speaks to me or asks me to so something, and sometimes I really can't make out what she's saying, and she gets very annoyed and moody having to repeat herself. It really tests my patience and tolerance to the limit sometimes, and I have to constantly remind myself that she is like this because of her illness, perhaps also because of the fear of impeding death. I sometimes really have to hold myself back from getting upset and bursting out.

I was very tired from the bad sleep and drained by my dreams and disturbing thoughts

Dream

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I saw death again, a blurred vision, a vague glimpse, but undoubtedly it was death... And it left me, in the dream itself, feeling so empty, so very traumatised and lonely inside? Is this how I will feel at the end of it all? Empty, indescribably empty and traumatised like a shellshocked soldier with a wounded soul that is so hard to make whole again?

I was woken up by the sound of mum trying to open her water bottle, and trying hard to get up from lying down.

I slept for a hour or so so far.

Return to TVG

20032012.2013

又回到台北第二個家...

Returned again to what feels like a second home to me in Taipei. Third time moving in for a stay at the hospital for the last three months...

In a way, I was somewhat upset to receive the phone call that there is a bed ready for mum, for it disturbs the routine mum and I have established being at home, especially as in the past week or so she has not vomited as much as before. And mum does prefer to be at home, where she can lie in her own bed and lounge in her comfy chair and watch tv. But I know that being readmitted to hospital is best for her, for they can give her IV drips and prepare her mentally and physically for the big surgery sometime next week. And mum has been saying in the past two days that she is feeling so much weaker than ever before...

I packed the essentials, and now I know what to bring and put into the suitcase. Clothes, blankets, pillow, toiletries, clothes, supplements, and even the notepad I recently bought her. I also snuck in the little Hinoki tub I recently bought, because I know mum will get upset if I brought that along. But I just want to do anything, bring anything, to make mum's stay at the hospital-- already a dreary and colourless place-- as comfortable and feel as much "at home" as possible.

44kg mum now weighs, some four kilograms less compared to about three weeks ago. She is so very thin that her sister and everyone who sees her are all shocked. I know I should not think this, but it makes me feel terribly to see mum's latest weight, for I have really been trying my best to take care of her and give her whatever I can think of to drink or eat. But still she lost so much weight under my watch! Nobody is blaming me, least of all mum, but still it hurts me to see her so very thin and frail.

How long mum will stay in hospital this time is not known, for it depends on whether she is fit enough to undergo surgery, and how she recovers after surgery. And it depends also on whether the specific surgeon mum has requested has time next week to operate on her.

Instinctively before mum left home, I took a picture of her sitting in her comfy chair. I don't know I suddenly got this feeling, this terrible feeling that once she leaves home tonight, she may not return... Terrible feeling, terrible thought!

Mum's spirit is somewhat a bit better, but still her energy levels and speech is so very weak. But she says she has confidence in the doctor, and that says a lot... That is what she really needs.



19 March 2012

Remaining affairs

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"I want to eat vegetables," mum said, "I've not eaten for a long time." I told her she can chew the vegetables but would then have to spit it out again. Otherwise the food remains will collect in her stomach and come pouring out like everything else she ingests. It was not her only request, for earlier she asked my aunt (mum's youngest sister) who came up a day ago to help out, to cook some fresh fish soup.

Mum looked a little better (or did I feel that way because I heard my aunt say it to mum early in the morning...?) and I suggested to go to the bank. She has been telling me there are some affairs she needs to take care of, things that have been on her mind for some time, and caused her so restlessness.

We left the apartment and suddenly mum turned to me and told me to go back upstairs to pick up some documents. "I need your bank details..."

I protested when I realised one of the reasons why she wanted to go to the bank. She wanted to transfer some money to me, just in case. I protested again and said I have more than enough already, and said she should keep whatever she has in case she needs it for treatment and whatnot. But she was getting irritated and having pains from standing around for too long.

"It is her wish..." I thought to myself as I went upstairs to collect the documents she needed. Her wish, just as she wished to eat vegetables and have fish soup. Who am I to protest against her wish? If she feels happy, if it makes her happy, why make a fuss?
Who am I to stop a mother wanting to make sure that when she is no longer around, her child will at least for some time have some means to live on?

We went to the bank, a branch of the same bank where dad served his entire working life, which over three decades. Every time, it feels so heart warming going to that bank, and everytime I'd look around and the staff (especially the older ones) and wonder whether they knew dad. Today it crossed my mind that in a few years, the older staff will have retired and gone, and gradually no body will have known dad or known that dad worked here before...

Mum sat down as I filled in the necessary forms to do what she wanted. It felt so unreal, for mum was so close by, yet unable to even properly lift a pen to deal with very personal affairs. She looked so tired, even though most of the time she was sitting down. The bank clerk was very patient and kind, even when it took me a really long time to fill in necessary forms (because my writing skills are very poor...). Occasionally I'd glance up to keep an eye on mum, who sat a few steps away and looked like she was in a lot of discomfort.

We were only out for about forty minutes or so, and we took the taxi there and back so mum did not do much walking. But she said she felt exhausted, so we had to cancel a planned visit to another bank, where in a safe she had deposited her valuables and her will (I know it's there, I went with her to put it there last year, but I don't know what it says...) Events in the past year or so, especially with the birth of her grandchild, has made her want to review her will. That must wait another time I guess. But deep down I was saddened that mum did not have the chance (or energy) to deal with this very important task today, for I know making changes to her will has been on her mind for a while. Especially with her health so fragile and (to be blunt...) death seemingly looming so close by, I think mum would feel more at ease if things could be dealt with beforehand. She later told me, if necessary I can open the safety deposit box on her behalf with her ID card and seal.

"You'll have to tell me someday about your bank accounts and such..." I said to mum. Not that I'm vying for what assets she has, but really it's a confusing mess as mum has accounts here and there and some shares in this and that company, and I've not really been keeping track. From the experience of dad's passing, I remember it's a lot of hassle to close down different accounts and sell shares, and mum did it most of the work. When the day comes, most likely I'll be the one who has to deal with a lot of the financial details, and it's a lot of work.

I too felt exhausted from such a short trip to the bank, strangely. I know partly it's because I've been sleeping terribly and am almost nightly disturbed by dreams and hauntings of death. But truth be told, it's tiring enough to see mum weaken day by day, it's tiring enough to have to be constantly vigilant and prepared to head into hospital at a moment's notice... But, as much as I know it's important to be prepared, the "after-affairs" (affairs after mum's passing away...) are heavy and very hard to think about and deal with now.









Dreams

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Another night of dreams, another night of death lingering on my subconscious mind...

http://www.youtube.com/watch?v=7OvsVSWB4TI&feature=youtube_gdata_player

Nothing more, nothing less

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Mum is visibly weaker than I have ever seen her before, and we have together gone through so many sessions of chemo and radiotherapy over the past few years. Everyday, she lies there so tired and so frail in her bed, unable and somewhat unwilling to get up. She often whispers, for she is so weak her voice is but a weak whisper now, "I've never experienced anything like this in my whole life..."

When I massage her, I feel just bone and skin. Just bone and skin! I try to hide my feelings seeing her so frail and so thin by smiling as I touch her body, as I massage her sore bones and strike her aching shoulders and hips. It's a very haunting to feel the sharp bones of mum's shoulder blades and pelvis so 'visible' to the touch. It's very haunting to grab mum's arms and legs and feel how terribly fragile and thin they have become, making me wonder whether she will gain her muscle strength back again... Again, the haunting image of prisoners confined in a concentration camp comes to mind...

Today my cousin, who is a trained nurse, came to visit. She told me afterwards when we were alone that she was so shocked to see how thin mum has gotten.

"It's the look of an ill person," she said, telling me how she's seen that look on the bodies and faces of cancer patients. "The tumour will absorb all the nutrients and feed on her body. You can see it in the way how her cheeks have sunk so much. It's the sick look."

I thought for a while that her dramatic weight loss was because she's not been able to eat much (if at all!) for the past three weeks. But now I realise, not only that, but the cancer is eating her from the inside, getting bigger and stronger by draining her own body's reserves.

Later in the afternoon, the monk in the mountains called. It's been a while since I last spoke to him, partly because I know he is going through some emotional trouble himself. And literally nowadays, " no news is good news"...

He was very convened how I've been and thought my break in communisation was because I'd gone off to do my round-the-island bike tour. I wanted to when I last spoke to him about three weeks ago (time passes so gruellingly slow, yet weeks go by so miraculously quick...), but because of mum's ever deteriorating condition, the furthest I cycled to was over the city boundaries some 20 km away.

"I've not been well..." I admitted. A rare admission, as I normally don't like to complain (that's perhaps ironic as this blog is perhaps blighted with rants and complaints!!). But really, the circumstances are such that my mental and physical energies are at their lowest I have ever felt, ever.

I describes mum's condition, and how she's lost so much weight, including the latest diagnosis of cancer growing in her intestines. "It's testing..." I said. And throughout our conversation I must have used the word "testing" a dozen times. But that is perhaps the best word I can think of. Testing of my patience, testing of my sanity, testing of my forbearance, testing of my health, testing of my faith in the teachings and ways of the Dhamma...

I narrated how frustrated and angry i feel at times, and how i feel guilty for feeling that way, and he assured me it is the most normal reaction (even a self-help guide to caregiving my ex kindly sent me said so...). For such a long time, almost three months now, I've had to deal with mum's deteriorating health almost completely alone, and there does not seem to be any signs of improvement, only deterioration.

The monk said frankly, even for him when he was (and in some ways still is) dealing with the decline and eventual death of his disciple, he knew all about letting go, all about attachments and suffering, but when it comes to you, when you are faced with real, hard emotions and feelings you cannot but feel overwhelmed and helpless.

Death is hard, that cannot be forgotten, but perhaps harder still for the loved one to process is the process of seeing someone you love dearly slowly, painfully, excruciatingly, uncontrollably dying. The sense of helplessness, the despair, the frustration and fears that are coupled with someone in my circumstances are impossible to imagine, and harder even to bear. "It's like watching someone trapped in a burn house and you're unable to save him..."

I described my tiredness, my utter exhaustion and sense of deep, deep despair. "I'm doing what I can, but feel it's far too little. But really what else can I do?"

"Keep on doing what you do, and I'm sure it gives your mother great comfort..." I struggled to listen to those words, because they are so true. I know what I do, the massages, preparing heat packs, making her liquid foods and juices, rubbing her numb feet and hands, they mean so precious little, but I know, and I can see, they give mum such great comfort and reassurance. "Your way is enough, it's what you can do and nothing more or less."







Let there be sound!

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I've been wanting to buy mum a new hi-fi system since her old one has become almost inoperable after just three, four years. It's the "curse" of living on a tropical island with high humidity, and being where our house is there is an added "curse" of being right at the foothills of volcanoes that emit sulphuric gases, which can get into electronic systems and erode electronic circuits.

Every time I say I want to take her to see a sound system, she says "later" or "some other day". But in her state of health, it's very unlikely she'll be able to go anywhere far, let alone be able to walk around the stores and compare prices. So yesterday I went for my evening "time alone" walk and went into two stores to look at hifi systems.

Like me, mum detests anything "Made in China", so there are (sadly) not many options. Even renowned and trusted brands like Sony have downgraded their products to be made in the "bad country"... There are however two devices, both by JVC, which are made in Malaysia, though the price tag is a bit steeper. That's the price you pay for being politically conscious in your purchases, and it's something I rarely compromise on (sometimes there's just no other choice!) So I took some brochures and came home to show mum and see which one she likes more, with the plan of buying one one of these days.

She looked the brochures for a while, then weakly said: "I may not have use for it for long..." she whispered, "Take... take it with you to Canada after I am gone."

I hid the pain of hearing those words with a smile. "nonsense! Don't talk like that!". But I knew why she was talking like that. Deep down, I knew and feared that kind of talk, because it's uncomfortably close to the truth, to reality.

One day when mum has gone, all the things I bought for her or am still planning to get her will be left behind...

And left behind will be memories of how I've tried to make the final leg of her journey as comfortable and carefree as possible. Both the material things and memories will be mine to keep. But only the memories of all that is happening in this difficult and testing period and memories of my sweet, little gestures and attempts to make mum happy will be mine to keep forever and forever...

Let there be light!

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Light can affect your mood and feelings. Light can be soothing and calming, agitating or fill a space with energy and an invisible sense of strength.

The idea came to me the other day when I was walking past a shop specialising in lights. I've seen the device before, a bulb-like structure that emits an array of different shades of light and which can be programmed to transition every dozen seconds or so. As mum has been having terrible trouble sleeping, and has been disturbed by dreams and thoughts (like mother, like son...) I thought perhaps a mood light device might give her room a feel of tranquility and calm, and perhaps give her better quality sleep. Otherwise, the light can comfort her body and mind as spends most of her waking moments nowadays in her bedroom.

"What a waste of money!" was mum's initial response when I set up the device in a corner of the room. She asked how much, but I didn't tell her. Again, I told the storeowner it was for my mum, and that I'm worried about her sleep quality, and I got a big discount off of the tag price (I'm terrible, at manipulating people... but it really is for my mum!)

The mood light transitioned between different shades of the colour of the rainbow, and immediately gave the room a very soothing feel. I think deep inside she was touched by the gesture, for soon after her tired eyes looked at the changing hues projecting on the walls of her bedroom, and she had a content, rested look on her face.

May the new gizmo and my good intentions give mum better nights of sleep and moments of calm and rest...

18 March 2012

Wish

Now more than ever all I want to do is sleep, close my eyes and imagine there is someone holding me close, keeping me safe from harm and death. More than ever I want to close my eyes and have someone stroke my body and tell me there is life after all this...

Escape, I want so much to escape from this all, yet am filled with guilt for thinking this way because mum cannot get away... She can't even go to the little park next to our house without feeling like it's draining the life out of her.

I can sleep, sleep, sweet sleep so I don't have to think or see (though I'd still dream terrible dreams...).

Dream

Again, as in the past few night, I was waken up in the middle of the night by my own subconscious mind, a mind so laden with images of death.

The details and particulars I can no longer remember. But what is clear is that like no other time before, I am preoccupied (perhaps even obsessed!) with the end of life. And it is very disturbing.

Is my sixth sense, which has often been so strong and vigilant, trying to tell me something...?


Dreams

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Death, death, I dream of mum's death whenever I close my eyes...

What is wrong with me? Why am I tormented by death and images of death...?