Unwell

Brother suddenly called me in the evening (morning Taiwan time).

"I don't want to scare you..." he said, "And please don't worry or think too much, but mum said she wants to go the hospital."

Mum dislikes the hospital... She could hardly wait to get out of there. But today for the first time, she requested to return. I asked to speak to her.

"I just feel very weak, like there's no energy..." she mumbled. I struggled to hear her clearly. My heart pounded like it did almost five months ago, when I got "The Call". I began trembling. At that moment my friend dropped by. I had asked her to come by because I needed her help printing documents I need to apply for a visa home.

"please don't rush here... Stay where you are for a bit longer. You've been flying around too much. No need to "chia bua bing"" Meaning "turning the place upside down", or making a mountain out of a mole hill.

I spoke to mum a little more, but she was getting dressed to go. Brother took over the phone and tried to reassure me more. But I was beyond reassuring. I trembled and shook, even though I said I'd go sleep. I did not.

Not much later, I was holding our family portrait and sobbing heavily again. My friend placed an arm around me and tried to comfort me. I was beyond comforting, and sobbed even more. I felt the saltiness of my tears in the corner of my lips. I felt the snot run down my nose. I was distraught, anxious, petrified. I was so far, far away... I folded my arms before me and clenched my fists. I held myself tightly, for it was the closest way i could console myself. Eventually I stopped crying. And soon began to joke and laugh with my friend as she hugged me tightly that I must smell really bad because I've not had the time to shower since my long bike ride today. She said I smell no more different than before, which could be a compliment, or insult. That's why it was funny. That broke my flow of tears And made me smile.

"I can still smile, right? Smile and laugh?" I asked.

"Yes, you can," she said as she stroked my shoulders. And that's an amazing ability in the face of everything.

It is so painfully hard, gruellingly difficult these moments of unknown, these sudden phone calls that leave me gasping for breath and for sanity. But one day it will be all over...

One day it will all be over...

Unwell

Brother suddenly called me in the evening (morning Taiwan time).

"I don't want to scare you..." he said, "And please don't worry or think too much, but mum said she wants to go the hospital."

Mum dislikes the hospital... She could hardly wait to get out of there. But today for the first time, she requested to return. I asked to speak to her.

"I just feel very weak, like there's no energy..." she mumbled. I struggled to hear her clearly. My heart pounded like it did almost five months ago, when I got "The Call". I began trembling. At that moment my friend dropped by. I had asked her to come by because I needed her help printing documents I need to apply for a visa home.

"please don't rush here... Stay where you are for a bit longer. You've been flying around too much. No need to "chia bua bing"" Meaning "turning the place upside down", or making a mountain out of a mole hill.

I spoke to mum a little more, but she was getting dressed to go. Brother took over the phone and tried to reassure me more. But I was beyond reassuring. I trembled and shook, even though I said I'd go sleep. I did not.

Not much later, I was holding our family portrait and sobbing heavily again. My friend placed an arm around me and tried to comfort me. I was beyond comforting, and sobbed even more. I felt the saltiness of my tears in the corner of my lips. I felt the snot run down my nose. I was distraught, anxious, petrified. I was so far, far away... I folded my arms before me and clenched my fists. I held myself tightly, for it was the closest way i could console myself. Eventually I stopped crying. And soon began to joke and laugh with my friend as she hugged me tightly that I must smell really bad because I've not had the time to shower since my long bike ride today. She said I smell no more different than before, which could be a compliment, or insult. That's why it was funny. That broke my flow of tears And made me smile.

"I can still smile, right? Smile and laugh?" I asked.

"Yes, you can," she said as she stroked my shoulders. And that's an amazing ability in the face of everything.

It is so painfully hard, gruellingly difficult these moments of unknown, these sudden phone calls that leave me gasping for breath and for sanity. But one day it will be all over...

One day it will all be over...

Dear mother...

I saw mum on skype today. I asked to. Was I prepared to? I don't know. The first image stunned me. That is my mother. My own dear mother on that screen... The same mother who raised me, who cleaned up after me, who scolded me when I was naughty, who stroked my head when I was good... the same mother who I cleaned up after until a few weeks ago, whom I scolded because I was frustrated and did not know how to deal with my emotions, the same mother whose skin I massaged in attempts to take away her physical pain, take away her emotional pain...

I cannot believe how thin she has become.
Her arm was just bone. It was not an arm, just a bone with yellowish skin. Her eyes bulged, her cheeks sunk deep into her skeletal structure. And yet she spoke like my mother, like the mother I have always known, like the mother I will also love and treasure no matter what... No matter how the cancer eats her up and no matter how the cancer finishes her off.

Dear mother, how seeing you is making me cry. How seeing you in this state is making me cry so much, even though I thought I was all cried out...

NRT-YVR

07052012.1840 NRT TIME

Ten minutes into the flight. When I saw the maple leaf logo, I was reminded of the last time I saw that symbol of Canada. I remember at the time I wondered in my mind when it would be till I see Canada again. And that time has come...

Just read the news to catch up on what I have been missing in Canada (and the world) over the past four months or so. Managed to get an upgrade on the long flight, despite being told twice that I could not. Maybe they made a mistake, for they only want 6upgrade points for a trans-Pacific crossing, which is perhaps three times less than I expected. Oh well...

Perhaps I could get some sleep on the lie flat bed, and adjust to the time difference, so I get back "adjusted" and able to cram everything I've yet to study. I made a start, an hour or so before people started talking loudly on the phone in the business centre of the lounge. It's been over a week since I last studied, and I have less than a week to go till the exam...

I'm a bit tired, as I managed to sleep only four hours or so last night. I lay awake for a while, thinking about all the things at home, and what I'll be facing once at get home. I fell asleep, and I swear I remember dreaming of being with mum and being with a carer. A strange and intense dream.
I woke up at around three, and found mum was moving, and I imagine awake. I asked her what was wrong, but she didn't say much. I massaged her a bit on the shoulders, but she told me to go to sleep. I don't know if she managed to sleep after that...

Before boarding the flight, I called home. Brother had good news, as mum's neurosurgeon approved and signed forms necessary for mum to hire a foreign carer. This may mean she could get one within a month or two. If all goes well, we may not have to "bribe" people, which I was so disgusted by when I first heard about that possible need.

But mum threw up a lot today, so I was told, more than she took in. Brother said she was feeling unwell when she went to the hospital for a check up appointment, and threw up stomach liquids, which mum claims is bile due to the colour. it was worrying to hear that, for she was doing so very well yesterday. And brother panicked, and asked me whether mum should return to the hospital, which I know mum opposes resolutely. That day when she developed a fever close to 39C, I urged her to return to the hospital, but she resisted strongly. Luckily, with some icing and constant monitoring of her temperature, the fever subsided. So with the latest vomiting, I told brother to monitor the situation and see.

What happened today, after I left? What is happening now, 18 hours since I left home? As I told mum again and again before I left, mood can have a profound influence on your state of health and well being. And I just hope, I can only hope, now that I am inching further and further away with every passing second, that she is at ease in her mind and that her body is comfortable.

Diapers

I called my brother to the washroom. I thought I could do it alone, but I needed help. I thought I could pull up and straighten the diaper mum had around her hip, but mum had difficulty even just standing up from sitting on the toilet. I needed brother's help.

He came immediately. At that moment, for the first time ever, two sons helped their mother wear a diaper for bedtime. It did not feel awkward, it did not feel embarrassing. We are all family, we, a mother and her children, represent perhaps the closest bond there is. Mum panted as she struggled to her feet. I leaned in close and pulled her diaper up. Through my nostrils, I could smell the hospital still, that scent still lingering on mum's body, even though she showered just before leaving the hospital.

For all the things I can fault brother, of all the moodiness and impatience and his easy irritability, that moment when we brothers helped mum up on her feet and escorted her back to her bed was a beautiful shared moment and experience.

In that moment, I saw that brother can do things if he really tried. My faith in him, my ability to want to see the "goodness" in him were not wrong.

I later told him privately that this is exactly the kind of things I hoped he would do more of. He must try, and learn, or otherwise he'll never know and never really experience mum's life and illness; otherwise he'll miss out on a part of mum's life that is perhaps as important as traveling together and growing up.

Mother's day gift

I really just wanted to get mum a soft padding to put under her whenever she lies down. But I walked away with a mattress...

Mum looked terribly ill today. For the two and a half hours I was there with her, she said very little. She had her eyes closed most of the time, except when I was showing her fascinating pictures of nature and of her grandchild on her eeepad. Otherwise, she sat lay there, and sat up for a little while, and just closed her eyes. From her facial expression you could see she was in a lot of discomfort...

Her red blood cell count is low again, and the doctor decided to give her yet another transfusion. As the two pouches of dark red blood dripped nip her veins, she became colder and colder. "It's so cold..." I covered her with another blanket, and held onto her hand to keep her warm. But still she was shivering. It is a common side effect of transfusions to feel wither cold or burn up in a fever, as the body has to adjust to foreign bodies.

Mum ate very little today, and for dinner just had a cup of warm drink, which is worryingly little. She said she had no appetite, and feels pain in the region where the bile tube is placed. Earlier in the day, her tube was changed to a thicker one so that there would be a better flow of bile out of her. It was yet another painful procedure and they administered a local anaesthesia. While they changed the bile induction tube, they also took images to see whether it is feasible to place a more permanent tube inside of her body so that mum does not have to carry a bile pouch with her all the time. The doctor came back and the initial assessment is that it is not suitable. No explanation was given as yet. I suspect it has to do with the spread in the duodenum, which may have worsened to an extent that the bile ducts are blocked and have no way out...

I sat quietly next to mum, leaned my head against hers and stroked her hands. Silently, I prayed and wished that she would feel better. I've done this a million times, but I still do it again and again in moments of despair. Why? Because what else can you do? What else other than hold her, touch her body and wish that hopefully whatever positive vibes and wishes will pass through the contact of our skin and quell her cancerous cells...

I left mum who had her eyes closed and who looked so very, very tired... I had to brave a smile as I left the room and wished her goodnight...

I didn't go home immediately. After a quick dinner (again, fast food...) I went to the department store she used to frequent a lot. I've been asking myself what I could do about her sore back, sore bum and sore shoulder blades. Much of the sores is due to the fact she does not have much 'meat', meaning if she lies for a long time, the pressure on her bones gets unbearable. She already has a padding, which she shifts from her shoulder to her back or to wherever the sore is most felt. But sometimes, she complains she is sore all over...

So I walked into the store, initially wanting to just buy another memory foam padding, so she has two and would have a greater surface coverage of her back side. Each costs NT$3600 (approx. US$120...) I was not surprised at the price, for the brand is her favourite, and she has a collection of pillows, a head-rest and even a comfy chair, the padding of all of which are made by  Tempur-- a company made famous when it invented a padding to relieve astronauts of the stresses of large G forces in outer space.

The storelady showed me the padding, the exact same one mum has, and she asked me what the pad is for. without going into details of what condition she has,  I explained to her mum's sores, how she feels sores and pains almost throughout her back side. The lady  told me I'm better off buying a mattress (overlay). "Simply place it over her existing mattress, and she would not need any other accessories."

I tried the mattress out, and it felt really comfortable, except for one thing. It was close to a thousand dollars, far, far more than I thought I would be spending. But the idea attracted me. If it can really reduce mum's sores, especially if she is going to be lying in bed for a long period of time, then what price tag can you put on that? I told the lady frankly that I did not have the necessary amount of money, at least not in case. "Is there anything more you could do about the price..?" I asked, "It's really hard seeing mum have so much sores, and not be able to do anything about it..." She understood, and for a moment there was a connection. She saw my heart, my intentions are genuine, and that I am truly buying it out of concern, out of love for my mother's comfort and wellbeing. The lady was moved, and said it is rare to see a child wanting to buy something for his mother.

She gave me a twenty percent discount, and then took off another hundred dollars or so under their "old for new" policy (whereby you give your old mattress for recycling). "I'm moved," she said, "As it's almost Mother's Day, I will give you a heart-shaped cushion for free too. But I'll have to clear it with my boss first." The heart-shaped pillow, also made of the same memory foam material as the mattress and pillows, costs over US$200 alone.

She rang her boss, and they spoke for a good five minutes. I could hear the lady say that there is a child who wants to buy something for his mother, but he doesn't have much. The boss was adamant that the pillow cannot be given away for free. Later, the lady came back to me and said it doesn't matter what the boss said. "I'll give you the pillow regardless!"

I was very touched, and had traces of tears shimmering in my eyes. I thanked the lady again and again, again and again. "Money you can always make..." I said. She finished my sentence: "But you only have one mother! Are you a single child?"

"I have a brother," I answered.

"Well, ask him to pay half of it!"

"He just got a child..." I explained. More to myself I guess, to justify to myself why my brother would not be contributing to this purchase. Just the other day, he was telling me how thrift he and his family must be as he's not working and is back here.

I walked away from the store with a large package and heart-shaped pillow, and hauled it all the way home. Along the way, I imagined mum's surprise when she sees it. I told the lady mum would get mad if she were to see that I bought her something else. "Just say it's discounted. Or better yet, just hide it under the mattress cover, so she won't see it!"

I smiled as I walked, and imagined the day mum sleeps on the mattress for the first time. Perhaps I will not be there to see that moment, but I smiled at the thought that even if I am away, my presence and the way I can touch her heart  can still be felt...

Dream

We went to a remote area to find this miracle doctor. A famed surgeon who could cure cancer, who could go in and remove everything in one go. Mum had so much faith in the guy after she heard it from a lady at a shop.

I googled online for his name... What was his name? Why did I spend hours looking for it but could not find it. Rumour had it he is located somewhere near Linkou, an area near the international area, where there is also a massive medical hospital. But I could not find him. With more searching and playing with words online, I eventually managed to track down an address and a phone number.

I had visions of him opening up a person's body. It was a soldier for some reason. And from inside the body, this famed surgeon took out bones. Bones that were not belonging to the person whose stomach had been somehow opened (not cut open, but just "opened...") They were bones belonging to a child r a baby...

Mum and I ventured to this place. It was not a hospital, but a little shack on the side of the road, situated at a busy intersection. How disappointed we were. But on the shack was a big billboard bearing the surgeon's name. White characters against a  brown background.

It was the most bizarre dream... So intense, so filled with hope in the beginning, and then everything just broke down at the end with a great big disappointment...

Diarrhea

I went to see mum as soon as I submitted my thesis, and it was already past noon.

She was using the mobile toilet when I walked in, so I waited behind the curtain for her to be done. The carer helped her back onto her bed, and I saw mum for the first time today. She looked so tired, so very tired, and in worse shape than even before the surgery.

"Eight times diarrhea last night..." mum said weakly. She lay there, her body, arms and legs mangled in a twist. It's good that she can drink liquid foods, but it a lot of it just comes right out, then how much of it is absorbed?

I sat on her bed and massaged her feet and her hands. "It's been so hard on you..." I said. First so much vomiting, then so much waiting in the hospital for surgery, and now diarrhea... When will it stop? When can mum go home again...?

Sleeplessness

I went in at seven this morning, and mum was sleeping. She slept poorly last night, the carer said, and was for some reason simply unable to sleep.

"I want to change rooms..." she told me. She first mentioned it last week, saying this particular room is not "suitable" for her. She doesn't say the word, but I know she believes the room is "not clean", in other words haunted or has some kind of spirit demon. And hence at night she is kept wide awake...

Whether it's true or not I don't know. But she is unable to rest, and there is a psychological reason keeping her awake at night. The more awake she is, the more she scares herself, and hence keeping her even more awake.
For non-believers, you might point to the fact that mum has had trouble sleeping for a while now, since around February. I don't know what the cause is, and she has been prescribed sleeping aids. But still she's often awake at night, even at home. I suspect it's related to her illness, and perhaps her mind is proliferating with thoughts and fears (something mum denies, for she says her mind is just blank when she lies in bed...). What is strange is that for the last two nights, she slept through the night without a problem. The painkiller induces sleep, but today, three days after the surgery, they reduced the dosage of the painkillers. So there is more reason to believe that perhaps a lot of the cause of her sleeplessness is psychological.

But I can't tell her that it's in her mind. She gets upset and says I don't understand. So we went to the head nurse and requested a room change. Mum says she wants to be back in the ward where she was when she was originally admitted about two weeks ago. From the way the head nurse spoke, I could tell she also found it strange and did not fully buy the story that mum's sleeplessness is due to the room where she is now being "unclean" (haunted...).

What do I say? I just feel so frustrated, because besides the physical discomforts and uncertainty whether mum can eat or not, now I have to deal with her strong belief that there is something "bad" in the room she is in.
If really moving will calm her mind, then fine I can help move everything. But at the moment, there is simply no other one bed suite available. And it is unlikely mum would want to move back into sharing a room with another patient.

Very frustrating...

Critical

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

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

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

Eve of the surgery

I rushed home to quickly shower and grab some things after the doctor explained to us the procedure tomorrow. I didn't really need to go home, but there were two things I wanted to do.

I got home, and knelt before dad's portrait. "Please dad, protect mum and help her surgery to go smoothly tomorrow... May she eat and drink away, may she at least enjoy some of the privileges of living by being able to taste, to digest food naturally... May she have strength again and may she have the health to live a life of happiness..." I knelt on the floor, and kowtowed with great reverence. Tears were on the rim of my eyes. It was a touching moment of just me and dad, and my prayers...

I also prayed before the little shrine mum has set up in the dining/living room area. A thought came to me out of nowhere, again the random imagination of a naive child who daydreams in order to escape from reality at times. I thought to my self and asked the deity: " if I have accumulated any good merit points in all my life, I would cash it all in and direct all the positive karma to mum in the hope that the surgery will go well, and that she will be free from her problem of not being able to eat or drink. Take my good fortunes away, take anything from me, just let mum come out alright..."

Before I left home, I did the second thing I went home to do. I grabbed the most recent family portrait, of me on the left, brother in the middle, and his wife on the right. In the foreground is mum sitting down and holding my little nephew. Our first family portrait together. "We are family..." I once commented it the portrait. We are family, and we can grow strong, be strong together, no matter what. I took that portrait, and it is now standing at an angle where mum can see from her lying down position.

Anything, anything, absolutely anything to keep the hopes up, to keep the spirit afloat and mind at ease. As I headed back to the hospital, I sat quietly in the taxi. The scenery outside was a complete blur. All I could see and imagine were scenes of "this time tomorrow"... Will mum be conscious? Will she be in the intensive care unit? Will the procedure have gone as planned? Will the doctor come out and say to me "I'm sorry, we did the best we could..."? I was again so afraid; so anxious, such a nervous wreck...

Before sleeping, I meditated a bit in front of mum. For a few moments, I places my hand on mum's belly, ad imagined... That inside, it is not so bad... that tomorrow, the doctor will open her up and easily do the procedures they had planned... That they will be able to stitch mum ip again and that the condition will be stable for some time at least...

Pray, pray, pray...

Return

"I can't tell you when to book a ticket or when you should fly!" I said, for the n-th time. I know brother is concerned and that his concerns can only be allayed by news from me on this side of the world. But I really can't tell him, as much as I would like to, he can come back on this date and things will still be ok, and mum will still be around. Who knows that? How can I or anyone be certain of that?

Last week I spoke to him on the phone after the diagnosis that mum's vomiting is in fact related to the cancer spreading. I hinted to him, with the hope he would propose it himself, that he should come back for some time, to spend time with mum. I didn't say it, but he knew what I wanted to say: sometimes you have one chance in life, and if you miss it, you may regret it for the rest of your life. And spending time, precious, quality time with your own mother when you still have the chance is one such chance. Since then, brother's asked for (and gotten approval) an unpaid sabbatical from his work of three months, and I told him not to worry about bills and mortgage payments in the meantime, for I can take care of those. Nothing is more important right now than being there with mum at such a critical and touch-and-go period of her life...

Brother's been calling everyday, the most frequent he has ever contacted me in my entire life. I tell him what I know, and reassure him not to worry too much, and to focus on his work. I know it's hard, especially being so far away and worried sleepless, but I can only tell him things are being dealt with, and that it's best for him to return ASAP.

Problem is, my sister-in-law and nephew are still here in Taiwan, and they were planning to only go back to europe at the end of March (thus two days from now), before all this vomiting and the latest diagnosis.

This means they'll go back to Europe, and within a week or two (at most!) my nephew and sister-in-law will have to make the same long, long journey back. Not difficult for me, as I've done something as crazy before, but we're talking about a mother taking a baby who is just seven months old!

They must return to Europe, for there are some urgent matter to deal with. My nephew's vaccination is due in a few days, and my sister-in-law must start applying to renew her residence visa, or otherwise she'll have to leave the Netherlands (even being married to a local citizen!) And my brother has to arrange the house, arrange for his/my cat to be taken care of in his absence, and so many other things he has to do.

I know my brother is worried, because as far as he knows mum's doing very poorly, and he's heard it from me, and heard it from him wife, but he's not seen just how poorly mum has been doing. So naturally he's anxious and terrified, and I think most of all, of missing the opportunity to see mum and spend some time with her.
So he kept on asking me for a date to return, but I simply can't give him one. "Just deal with what you need to do, choose a date, and book a ticket. If circumstances change, then change your plans accordingly!"

What else can you do? I just find it so bizarre how some people, including my friends, just book a ticket and make plans well in advance and get so frustrated by changes in plans. Life happens, plans must adapt accordingly. What else can you do? Lament fate and the unexpected twists and turns of life and circumstances? I wanted to say to my brother "Welcome to my world! This is how my life has been for the last four years!!" For it's true. I come and go and stay without knowing when I'll come, when I'll go and how long I'll be staying. To be frank, I despise this kind of uncertainty, I really crave for stability and familiarity, crave for the ability to spend a few months, a year at a time at one place (for me that would be in Canada, with my little cat and friends...), but I've just not been able to do that. Is it by choice? Perhaps, for I can simply choose to stay put and not care about mum and just go do my own things. But I can't, I can't just "abandon" her, I can't just turn the other way and not feel at all conflicted or guilty...

So what else can you do but make plans, and wait and see. If it works out, great. If not, we can only see how things are or can be and decide accordingly when we get to a point when circumstances make us choose and make us prioritise. Not everyone (and I doubt anyone!) is free to live so meticulously and timely without the possibilities of unexpected changes occurring.

and especially in the face of the possibility of losing your mother, your remaining parent, I should hope that everyone will make changes to their plans and act accordingly.

Neurosurgeon

I've always a good feeling about him, ever since I first met him around three months ago. He is very courteous and caring, and has a nice smile. Some say he looks a lot like me, tall, thin, perhaps a bit nerdy-looking, and is perhaps only a few years older than me. Mum even says he asks about me when I am not with her during follow up appointments.

Mum made an appointment with the young neurosurgeon about two weeks ago, a follow up to see how her spine is recovering. A the time mum was severely vomiting already, and the neurosurgeon was very concerned, even though it is not related to his field of practice. He said he would do anything he can to get mum into hospital, even have mum admitted into her ward if necessary just to give her IV drips. It wasn't necessary, but he offered the help, and that was enough to touch mum's heart again.

As mum was in hospital already and too weak to go downstairs to the clinic to make her appointment with the neurosurgeon, she asked me to go on her behalf. "Please thank him for everything he's done for me. The surgery was beautiful and I am very happy..."

I went to see him at the allotted time, and passed on my message. "Where is she? I'll go see her when I'm done with my consultation hours."

And true to his word, two hours or so later he dropped by. Mum was surprised and delighted to see him, and immediately got up from lying down. They chatted for a good while, mum narrated her story (ordeal...) since she last saw him, and he listened patiently.

"Thank you so much for everything you've done. The surgery was very well done, and I am so fortunate to be under your care..."

The surgeon was embarrassed mum kept thanking him, but it really came from her heart. She says she has been so blessed by this neurosurgeon who, when mum was in hospital after the surgery and back in early March, would come see mum everyday and check up on her condition. Always with a smile, always giving her encouragements and invaluable kind words.

"I really did not expect the cancer to grow so fast..." the surgeon said sadly. Mum knew he tried his best, and he gave her priceless opportunity to salvage her ability to walk and move her limbs. Even for a few months, the few months since January, it is enough to safeguard mum's dignity and worth as a person. Otherwise, being completely bed-bound and reliant on another for your everyday basic needs is (without disrespect for those who are like this...) torturous and unbearable for mum. She said to me she would rather die than be like that...



Mum truly has been blessed, and she is eternally grateful. Not only the neurosurgeon has been so kind and patient, for now in the colorectal surgery ward, she is under the care of a surgeon who is perhaps the most esteemed in the field in the country, a surgeon who operated on a former president. He too visits almost everyday, and talks to mum frankly about her condition, giving her the confidence and facts that she needs to process the reality of the situation she is now in with compassionate understanding and a gentle smile.

This is the kind of medical team she needs at her side as she embarks on this final leg of her journey of life. She has the support and expertise, compassion and humane sensibilities of doctors who respects the patient's will and opinion, and is not just out there to make a quick buck or throw medical jargons around and authoritatively tell you what you must do.

"If you need me, you have my direct office line," the neurosurgeon said before he left. "Anything I can help you with. And I'll come to see you sometime again. Take good care!" And he turned to me "Anything you need, you know where to find me!"

He left the room, and left my mum smiling, confident and content, even in the face of the most adverse of circumstances.

Dream

25032012.0148


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.

Assessment

20032012.0746

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...

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.

The verdict

The new oncologist is a patient man, who was very willing to listen to mum describe her history and conditions. He is the kind of doctor mum needs in preparation for the final leg of her journey, the kind i hope can give her assurance and confidence, no matter what happens from now. In the final leg of life, is not assurance and confidence what we need, along side love and companionship? He is the kind of doctor I have been hoping will listen and advise, and will be Frank with mum. Because secrets and the unsaid can do so much more damage.

The MRI  scan that was conducted at the beginning of the month revealed a blockage in the front section of the duodenum leading from the stomach. What is for certain but almost relatively clear, pending confirmation from a biopsy that was taken during yesterday's endoscop, is that the blockage is due to a tumour growing there. Whether it is a new instance of cancer or something that spread from the original site of mum's cancer in the colon is uncertain. It doesn't really matter.

What matters is that with the blockage into the duodenum mum simply cannot eat and simply cannot digest anything, which means she is not getting any vital nutrients to sustain her bodily functions... and what happens when you cannot eat or drink properly? You weaken and you die.

Surgery is the only wat to deal with the problem, either by removing the blockage or by creating a bypass duct to allow food to circumvent the blockage enter the duodenum. The feasibility of the operation and how deeply the surgery can remove the problem epends on an assessment of mum's health condition (which terrible...) and on whether it is worth conducting such an invasive surgery. This can only be assessed by the gastroenterologist, and there is an appointment planned for tomorrow.

The oncologist was very frank with mum after looking at her medical records and noting the treatments she has undergone. She has really done every type of treatment there is, but the cancer keeps on returning and more aggressive. Without solving the eating problem, everything else, including possible followup treatment to contain mum's cancer, is not even worth mentioning or discussing at this point.

I was extremely disheartened, even to the point of being able to hear my heart break deep down inside... mum has gone through so much, so much already, but there is now even more ordeal to overcome? What is wrong with the universe to throw so much at mum, and indirectly at me...? I looked at mum's face as she walked slowly away from the consultation room. We were silent on the entire journey home. It was a journey we have taken before together. The long, long journey home after receiving a warning sentence on your life and happiness.

How does one face all this without flinching? How does one receive such news without being affected or dragged down to the depths of despair?

We got home and I closed the door behind us.

I gave mum a long overdue hug.

A hug to help both of us calm down. A hug to help us both face a new reality we did not foresee and could not prepare for. A hug, filled with unspoken love and care to receive mum I will be with through this and a whirling more.

Be prepared

Be prepared

"Your mum came too late..." The lady told me. All those drugs and medicine she has been taking have completely covered her organs that they don't function any more. The last five days of chantings every single morning can only help her a little. She has to be responsible for her health and happiness. She has to be willing to believe she will be better.

"You can only do your best as a child, and leave the rest to the heavens," she said to me as I put on my jacket to leave. Send positive thoughts to her, silently give her your wishes and blessings, silently ask her spirit to chant with you, she told me.

"You have to be prepared..."

Was there a veiled caution? Does she know something I don't know but may know very soon? Again, the Taiwanese language is one that thrives on ambiguity.

Prepared for losing her... Prepared for losing the one last thing that is dear to my heart, dear to my life, dear to my very being.

Fear

Have you ever been so afraid of anything you cannot see, you cannot touch and yet you know is there and killing you painful?

That is fear...

Doctors

Doctors
The endoscope has been done, mum can go to ER and be transferred to the gastroenterology ward for follow up and treatment. It's the quickest way to be provided with professional medical care. She really has been waiting and putting it off for far too long. But she does not want to go.

She wants a "good" doctor. How it works here is there are a number of specialists in each department, and the patient can choose which one s/he wants to be seen and treated by. So it is understandable people want to have the "best". I asked the head nurse at the gastroenterology ward who she she can recommend and made and appointment for today, but mum does not want to go. The doctor is not of "professor grade".

"Are professor grade doctors supposed to be better people? Are they supposed to care more about patients?" I am very frustrated. So much waiting, and mum could already be in hospital to receive treatment for whatever is causing her to vomit so much, but she wants to find a better doctor. A doctor who comes recommended.

I woke up this morning and had to rush out to go to the chanting session. Mum sat there in the living room and asked me to call her neurologist to see if he can recommend a "good doctor". "Can you not do it yourself? Why must I do everything?"

I know it's not nice to say that, but I really have become so very tired of having to do everything single thing. I found her a doctor which comes recommended, but she does not want it. She wants a doctor that is recommended by someone she knows, in this case her neurologist. So she can call her neurologist herself and speak to him personally, why is that so difficult?

This really has been bothering me for a while. Even when my brother was around, mum asks me to do simple tasks like fill the water kettle. Such simple things my brother can be asked to do while he was here, and yet I am the one who has to do everything...

I am just so tired and so frustrated of waiting and watching mum vomit again and again. It is driving me to extreme levels of sadness and desperation, and pushing my patience to extremes.