Hospital visits

8 visits to the CyberKnife surgeon, over 100 visits to the oncologist, mum's main physician, over 60 visits to the neurosurgeon...

Records do not lie. They reveal the unbelievable extent of mum's visits to the hospital in the course of the last six years. Brother went to the two hospitals where mum received her treatments to collect all the documentation necessary to file insurance claims. And the records prove that over the span of six years, mum has undergone such an ordeal. Her will has been so strong, she has been so brave, but the cancer is stronger. Too strong and now she is much weakened and close to defeat...

In and out, in and out, and in recent months more time has been spent in the hospital than outside of it. Appointments, checkups, indices, scans, blood tests, consultations filled with hope of treatment, and consultations filled with dreadful diagnoses and expectations of the worst to come. It has been such a long, long and difficult journey. One that mum embarked mostly on her own.

And it is perhaps coming to an end now that the hospice agreement has been signed. From now on, it is just a matter of treating the symptoms, soothing pain and reducing suffering.

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...

Talk with the doctor

The doctor came around the usual time of a little past seven in the morning. He greeted mum, and asked her the usual questions of how she has been doing, what she has eaten and how much she excreted. It's important to keep track of all that goes in and comes out.


Before he turned to leave, he gestured to me and mouthed to me to follow him. Just me. "We never talked about what happened during the operation last week, did we?"

No, we didn't. I am anxious to know, but for several days, even till today, I was/am so worn born the tension building up to the surgery that all I needed to know was whether mum could eat again.

The doctor led me to a room and sat down at a computer. The bypass surgery was a success, and they managed to do what they set out to do, which is reroute the intestines so that mum can ingest food and drink again. The vomiting and diarrhea is normal in the beginning, and should with time subside and disappear once mum's bowels get used to the redirected flow through her body. After all, the body has been used to the "natural" flow for so many decades, and asking it to get used to a change of course takes time.

The good news is that the situation is not as severe as they suspected inside (but, still it is severe. The spread of cancer always is ...). The cause of mum's vomiting is not a recurrence in the colon, as diagnosed earlier, for the colon is very 'clean' still, even six years after her initial diagnosis and operation to remove part of the colon. The problem lies in the duodenum, the beginning section of the small intestines. The doctor showed me a power point presentation of mum's case, for it has been discussed by a number of doctors including one from internal medicine. One slide contained a picture of mum's belly with an incision. In the opening, a bundled mass of pink and red came out (WARNING: graphic pictures of what the image looked like). There was a bit around 15cm or so which the doctor pointed to and said was the 'infected' part of the duodenum.

The doctor said that section is removable. They did not do it during the last procedure for the risks associated with it is high, and they could not perform the removal when she was in a terrible condition (she still is very frail...). The doctors recommend that after mum's health is stable that perhaps she can undergo treatment to remove the cancerous part of the duodenum.

"Another surgery..." I thought to myself. Just when we thought it has finished, the doctor came back with news of another possible surgery. There is a reason why he only told me, and has not told mum yet. For it is probably too much of a shock just after one surgery to let the patient in on the possibility of another surgery coming up. It was already a shock to me, and made me rethink my plans in the coming period, and over the coming year. I thought I could make plans to go back to my own life and start pursue my dreams again, but one talk, and a lot of my imaginations and plans are now on shaky grounds..

It will be a risky operation, but if removed, then at least that bit of the body will be rid of a major source of cancer. "Fifty-fifty..."

"What do you mean by that?"

"The chance of survival if removed. " Thus the same chance, same risk if not removed.

I asked how long we need to consider this, and whether he could give us an idea of how quickly or badly the cancer will grow and spread. As expected, there was no time.

I went back to mum's room and she was of course curious why I was called out.

"Oh, the doctor said your surgery went well, and the situation is better than expected..." I held my self. I dared not look mum in the eyes for long. I felt like I was betraying her, lying to her by not immediately telling her the truth.

Forgive me mum, I need time to figure out how... I need time to process it myself and time to build up the strength to tell you in so many words so as not to scare you or disappoint you...

Torment

"I have never felt like this in all my life..." mum said. She looked terribly weak, terribly shaken. Another vomiting session, three, four throw ups in one go, brown liquid pouring out of her mouth into the see through plastic bag I just managed to hand her. It pains me, it really pains me so! I lay down next to her an patted her back, her thin, bony back. I felt her ribs on the side of her body, I felt her shoulder blades, I felt her spine... I felt such pain, such terrible anguish seeing mum suffer again and again.

Five times vomiting today. It seems to be getting worse, though the first few days in hospital it seemed to be getting better. Now, even shots that are supposes to prevent vomiting, which are painfully jabbed into the muscles, do not work. Tonight and last night, mum vomited all the same, yesterday even within five minutes of having the needle stuck into her arm, even barely before the blood has dried...

"What is the meaning of living is this is the way it is?" I asked rhetorically. I know, in this moment when death is lurking so close by, and just before an attempt is made to insert a tube into mum's nose so she can at least sustain her life and her body for just a bit longer, what I said was perhaps cruel and unfeeling. But I suspect that mum feels the same sentiments, or otherwise she would not say that all her life she's never been through something as terrible as what she is going through now...

What is the purpose of all this? All this pain, discomfort, all these sores and mental anguish at seeing your body decline and decline? What lesson is mum supposed to get out of all this suffering if anything? Six years of being sick, six years of treatment and getting even sicker from treatment, and now surgery, now being robbed of the ability to eat and drink

[as I was typing this, mum made a gargling noise, and I knew she was going to throw up again. Six times today! Six times!!!]

What is the purpose of all this suffering? What is the purpose of living at all if all you will get is sicker and sicker and sicker and sicker? I am hurting and crying so badly inside... So badly deep inside...

Oh, cancer! How you torment my dear, brave mother so! Oh, damned cancer! How you cause her so much pain and suffering and do not seem to want to stop anytime soon! Cancer, you are taking my mum away, bit by bit, you are making her so weak, so thin, so very sick... Are you happy now? Have you fulfilled your mission yet, or is your final object to torture her till she dies?

Well, when she dies, you will too...

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.

Decision

16032012.1543

Mum and I pleaded with the surgeon. He came highly recommended, a well regarded specialist in colon and rectal surgery, who even operated on a former president. Earlier this week the same surgeon operated on mum's brother to remove a lump in his colon.
Mum waited almost two weeks to be seen by this surgeon, and she was not easily going to give up.

The surgeon explained, confirming the oncologist's diagnosis, that the cancer had spread to the duodenum and was blocking food from leaving the stomach and entering the small intestines. The vomiting is a "naturally" (it's far from natural... But it's what happens when there's a severe blockage.) reflex of the stomach to eject everything out the way it came in; through the mouth thus. It's very serious, and the doctor said it must be operated on. Either to remove the blockage, or as is very likely the case, to put in a bypass duct to redirect the flow of flood past the tumour.

At least we knew and confirmed the cause of the vomiting, even though it was very hard and difficult news to... (literally, pun intended, if it's not too crude...) digest.

Then came the bad news.

"You can go see the surgeon who operates on you before. I have too many patients..." the surgeon said, referring to the surgeon who performed the operation to remove the original colon cancer back in May 2006, on Mother's Day of all days. Mum's face turned when she heard that the surgeon did not want to treat her. She looked so small and sad slumped away in the chair, even smaller and sadder now that she lost so much weight...

But mum has not seen that surgeon for almost six years, on account of his poor attitude and lack of compassion toward her. Mum was assigned to him by the ER ward after a routine checkup (arranged by my dad, who pushed mum to get checked...) revealed the Stage III tumour there. She did not choose him, and did not look around for a surgeon she was confident with or trusted (which is often done here... Patients can choose and pick their doctors). On a return visit after the surgery, mum complained that she was feeling very tired and drained of all energy. That surgeon replied: "Tired?! Can civil servants ever be as tired as doctors?" No need to explain why mum never went back to see him.

Mum narrated the experience to the new colo-rectal surgeon, who is the head of the department at the hospital and well respected. He was unmoved for a while, and kept on saying he simply had too many patients to deal with, and that he was simply overwhelmed with work. But mum and I persisted and tried to persuade him to change his mind. For a while, mum just sat there, and it was a tense moment, and I was half expecting, half fearing the surgeon would throw us out of his consultation room. I felt like crying.

The surgeon sat there and was quiet as mum continued to plead her case. "I've not been able to eat for three weeks, and I've waited so long to see you." The surgeon said he could not take her, for he would not be there the following week to assess mum's case, and that this would endanger mum's health. But mum pleaded more, and my aunt (who was with us, and whose husband was operated by the surgeon a few days earlier...) added a few words too. "Please doctor, we know you a good doctor, please don't refuse us..."

But something moved the surgeon eventually. When he heard mum's complaint about his colleague he finally said that there are some doctors who will only take "good patients", ie patients who have a good chance of recovery and surviving. He never mentioned mum's surgeon six years ago by name, but from his words and tone, and from the way he was forcing a smile, it was as if he was implying his colleague was one of these doctors.

Eventually, after listening to us for almost ten minutes, the surgeon finally said: "You're really willing to wait? I won't be able to do anything until the week after." The surgeon was somehow moved, and despite his initial resistance to taking the case, he relented and said he could make time and make sure a bed is freed up for mum.

And mum quickly agreed to wait. There was a look of relief on her face, as if half her worries have gone.

"You can go to ER and get some care and treatment before the surgery. Or you can go home till we call you." the nurse told us. Mum chose, of course, the latter. Home meant better sleep quality, better comfort, less noise, even if mum has not been able to sleep much and any good anywhere...

We returned home, i wondered how long it would be before we were called in, and how long it would be before mum receives some kind of treatment.

But at least we have some hope yet.

Followup

Seized with fear and dread, I could feel my emotions and tears threaten to emerge.

More treatment, more chemo... How much more can mum take? How much more...?

I

Blog for a cure

Ever since I joined the online community of cancer warriors and their loved ones, I have been reading about other people's struggles and intimate, touching stories. It really has helped me in a way, especially in knowing that there are others out there who can understand. When there is no one I can turn to, not even friends, not even my ex who just breaks down and cries, these people on the internet whom I've never ever met really are a source of support.

I am touched by their stories. And every day almost there are sad ones about a warrior losing the greatest battle of his/her life. The last blog entry is usually written by  a family member, or sometimes the webmaster. And several of them moved me to tears... So much struggle, so much suffering, and in the end, the person is taken away. The latest one, a lady just three years older, a mother of three young children, wife of the love of her life... So merciless is cancer! So cruel!

One day, I know, one day it will be my turn to write that difficult entry... And everything I am doing, every event I am noting down, every word I am writing down is hopefully going to make that process and that final moment all the more easier.

Follow up

doctor's drawing

We arrived pretty early at the hospital, and the waiting area was almost empty. Saturday morning, and as there were not many people around, the doctor was absent temporarily for a routine check on his patients at the hospital.

It was not long before he returned and called us into his consultation room. He remembered us, and quickly pulled up mum's files, including the latest MRI scan from three days before (yes, it's that efficient...). 

 Unlike other doctors mum has consulted, this one at the new hospital who is in charge of mum's CyberKnife treatment, took us through the images. He explained slowly  what he had done, how he assessed the risks and planned the treatment to be spread out over four days: one day for the lower spine area (section L5), and three separate days for the T2 section higher up. He was courteous and friendly all the way, and even picked up a pen and paper and began to draw. As the T2 section is immediately below the column which was removed in the recent  surgery, and where a metallic support has been installed in its stead, the doctor could not use gamma ray radiation from a direct angle. The metallic components would deflect the rays, and instead of killing the tumour cells damage cells in the spinal cord and also esophagus. So the solution is to radiate from an angle to minise damage to surrounding body parts, and maximise expose of the tumour to the radiation. But of course, even at an angle, a bit of the radiation will still affect the surrounding parts. Mum told me later in the evening that she is feeling a throat ache and having pain swallowing. The symptoms are coming...

Compression on the nerve

The lower spine section is more or less treated and should be in control. But the problem is the area near source of the great big lump that was removed. Another reason for the prolonged treatment was because the doctor wanted to make sure all the bits of the tumour that were unable to be removed completely can be radiated to prevent the risk of them coming back again.

"What about the numbness in my right hand?" mum asked. The numbness that has caused her signatures to be no more than a scribble. The numbness that now means every time we go out to eat, I have to request a fork (which often the waiter/waitress would hand to me, thinking I need it... I have since been carrying a fork with me in my bag.)


The doctor showed us another image of her spinal cord. "You see this lump here? That's the lump compressing on the spine and affecting mobility in the right hand". The gamma ray was directed at that lump, but the effects of the radiation is not immediate, and it will take around three months or so for the lump to shrink and disappear. Much longer than I expected, for I was thinking once radiated the tumour would just vaporise and break down... I was disappointed. Mum has to live with numbness in her hand and arm again for several more months. She went through that ordeal already with her left hand and left arm. And now it's the right one... I remember thinking last year when she was in almost constant pain and feeling constaly numbness, thank goodness it's not her right hand, which she uses for everything. But it now is...

"And there's another section that I am looking at and planning treatment for," the doctor said as he switched images and located section C2, five sections higher than the removed section. Five sections closer to the brain.

He showed us what a normal, unaffected bone structure looks like. White, with light greyish patterns on the inside. Section C2 is obviously much greyer, and the patterns are denser and more complex. I looked at it with dread. I looked at the image with question the question: Why...? Why...? But there is no reason. There is no answer as to why. It just is.

C2

"I think it's best to treat that soon, and I'm planning how to do this with the least possible damage," the doctor said. C2 is very high up, and the throat and spinal tissues around there are more sensitive than others. "I will let my assistant call you if need be. It should only be a day or so."

I could tell mum was confident and comfortable with this doctor, even more so than with her main physician, whom she is beginning to distrust and even dislike because of his attitude, especially after her surgery. So she asked the CyberKnife specialist to recommend one, preferably somewhere around where we live.

He smiled and was very frank with us, as was his assistant sitting next to his desk. There is a specialist cancer hospital close by, which mum and I both thought might have better doctors and would like to be transferred to. But they were frank with us: that hospital is for rich people with bottomless pockets. They will ask you to pay and pay and pay, and the doctors aren't really very good. And he also told us at his own hospital, the doctors are not of good quality either. Besides, it's far too far away from where we live. "Better stay where you are, and I will refer you to a new doctor at the same hospital where you are now. I'll call you soon," he said, with a smile.

I thanked him profusely for his patience, for his understanding and for spending almost twenty minutes with us, while outside I noticed after I left his office, there were already half a dozen people waiting. "There is a humane doctor, one who really cares about the patient's wellbeing..." Mum smiled, and looked reassured for a moment, and perhaps I was imagining it, but she also looked confident, and a little bit stronger.

The day was not over yet, for she still had an appointment with the gastroenterologists for her stomach upsets and almost daily vomiting for over two weeks already. Even the medicine that was prescribed to her does not seem to work too well.

The doctor took a look at the Xray that was made of her last week, and saw no sign of gas accumulation. "We need to do an endoscopy to really find out what is wrong, otherwise we can't tell for sure..."

Mum, I could see, was filled with dread. "That's so uncomfortable... And I just went through this surgery..." I know it myself, how very uncomfortable and sickening the experience can be when a tube is shoved down your throat till you gag... She did not want to go through it, and said she will just take some pills and wait and see if there is an improvement. 

There could be any number of reasons why she has been throwing up. Her bad quality of sleep and nausea over the past two, three weeks. The steroids she has been taking in the run up and also after her CyberKnife treatment... The glutamine I bought her and asked her to take every day could also induce vomiting... Even the treatment itself may cause stomach upsets and induce throwing up. Many number of reasons.

Mere moments later, she threw up again.

Follow up

Another suspected spread, another treatment due...

Another MRI

She went inside the MRI room, and the technician closed the giant green door. On the door was a sign warning of a strong magnetic field.

A terrible racket began. Incessant, deeply annoying, and loud, it's like the sound of a machine gun rattling rapidly; a sound which at times changes in tone and pitch to resemble the sound of a water pump hard at work. If it sounds like this behind the closed door, what it must be like for mum right inside...

The technician's assistant came out, a lively young lady with a quick pace and quick voice. She explained to me that contrary to what the doctor had informed us, mum needs to have radioactive tracers injected in order for the MRI scan to be more accurate. "Otherwise, there are things that may be missed". The word "missed" she said in English, which made me wonder whether she studies abroad or is an overseas Taiwanese like me. She went on to explain that on the doctor's instruction for the MRI scan it explicitly said that the injection of a trace chemical is essential.

At first she was unsure of whether she could tell me mum's medical details. Perhaps she thought I did not understand what was written in English on the doctor's note. "Meta," she explained, "Means metastasis". There's a suspected metastasis to section L5.

My heart sank yet again...

Is this why just now mum's signature on the consent form looks likes a weak scribble?

Is this why mum has to ask me every-time to open her water bottle for her? Why she has to eat with a spoon and fork nowadays, instead of with chopsticks?

The machine behind the green door continues to rattle rapidly ad loudly. Another test, another scan, another result, and perhaps yet another setback.

Valentines Day

She threw up again just before entering the cyberknife operating room. What little she ate, a bowl of congee, nuts and a slice or two of mandarin, poured out of her mouth in the hall of the hospital. I patted her back, but looked away for fear of getting sick myself, and handed her a bag and water to swish her mouth. I held her hand in an attempt to calm her, reassure her.

Almost an hour since she went in for treatment. Again, the technician went in and out to adjust her body and posture for the machine to operate. On the counter of the registration desk of the oncology ward was a beautiful, beautiful bouquet of roses, with two little Teddy bears on top. How lucky that girl/ boy is to get such beautiful flowers and expression of love on this special day.

--

Mum came out over an hour later. A few steps later she threw up again. And again.

永遠的飛

Her lawyer came on tv and announced the news. A Taiwanese diva, immensely popular with people of my parents' generation, passed was put to rest yesterday. It was a shock to this nation, for her songs and moving voice was one which could instantly capture people's hearts, longings and sense of nostalgia.

Fong Fei-Fei was born in a humble environment in the Taiwanese countryside, and went to sing at a young age in order to help her family financiallu, as many stars those days did. Her singing in Taiwanese is reminds one of the voice of a mother whose care and love knows no bounds. Her songs in Mandarin carry a Taiwanese accent that is endearing, even to Chinese-speaking communities around the world.

Even more shocking is that she passed away on 3 January, over a month ago. She requested that her passing be kept secret and that her funeral arrangements be kept low-key. The lawyer explained that she did not want to trouble people and make her fans sad especially with the run-up to the lunar new year. Till the very end, she thanked her fans and cared about them, and did not want to sadden them with news of her passing during a most festive season...

As a child, a tape with Fong Fei-Fei's (鳳飛飛) songs would be played over and over again on the car cassette deck (remember, this was back in the eighties...). I didn't really understand the words back then, and even less the sentiments about love and loss. Even so, I knew somehow that she was special, for dad at times would hum happily to the tunes. I would often ask mum and dad to explain certain Taiwanese words that I did not understand. In short, her voice accompanied me throughout my childhood, her songs was the background music to many family outings in the car.

She died of lung cancer. Metastasis to the spine. She was sixty years old. Like mum.



The diva may have left this world, but the first song that made her so popular and famous still has a special place in many people's hearts...

祝你幸福 Wish you happiness

Fong Fei-Fei(Translation mine)

[I] Give you a gift of love, I wish you happiness.
No matter when, or where you are,
Do not forget my well-wish.

The journey of life contains sweetness and bitterness,
[you] must have strong will,
Develop your wisdom, leave behind your beads of sweat,
Create your happiness.

心肝寶貝 Baby sweetheart

(translation mine)

Softly, softly, listening to the sound of breathing,my dear baby child.
You are my happiness, hope, full heartedly I raise you up,
Hoping you are bright, hoping you are knowledgeable, hoping you will grow upsoon.
Hoping you are cute, healthy and lively,
Unafraid of the cold of the wind.

Diagnosis...

Mum described how she's losing the movement of her fingers, losing the ability to write, the ability to even eat with chopsticks.  I've noticed in the last couple of days how her fingers tremble. How is this possible after the major surgery?

"We need to do another MRI..." The doctor said. As soon as possible. The urgency scared me, and my heart sank.

The doctor could not immediately diagnose what seems to be the problem, but he did mention that it's related to the spinal area that is due to be treated in two days. Could it be that in the three week delay in treating that particular section, the tumour has eaten away more of her bones, eaten into more of mum's nerves? I was dizzy with the thought, shaking and frightened inside just from the possibility.

The consultation was with the new neurosurgeon at the new hospital that she needs to go to for her Cyberknife treatment. As the doctor gives mum lots of confidence and is very approachable, mum took the chance to ask more questions about her condition this morning.  Mum  mentioned to the doctor her inability to sleep these days, and was prescribed some sleeping "aids". The doctor made a distinction between sleeping pills and "aids", which made me wonder whether it was merely a euphemism to mean the same thing. Somehow, perhaps being at the hospital so much and so often, has made me a skeptic... In the end, it's all chemicals, all of it. It's all artificially made and contain steroids that in large quantities  will accumulate in the body and slowly poison you, destroy your liver functions and overburden your kidneys. Mum already is showing signs of swelling in her feet, and her fingers. That's why mum sometimes refuses to take her pills as prescribed, that's why there are bottles and bottles of pills sitting on her shelf still unopened.

"What about throwing up? I've been throwing up for over a week now. Nothing stays in the stomach..." And it shows in how her cheek bones have sunk a bit, and in how mum's weight has dropped even further. What is worrying is that for the new cyberknife treatment, mum needs to take medicine intended to protect her throat and nervous system from radiation damage. Because she's throwing up almost after every meal, it also means the medicine she takes is washing out with everything else. "I'll make an appointment with another doctor, a specialist in digestion, and he will be able to address your concerns..."

Scans, and more appointments planned. Another long, long week ahead.

Treatment Day One

Another cold, cold rainy day in Taipei. Together we rode the taxi to the hospital in the south of the city. The meter clocked over sixteen kilometers, and we were still within the city boundaries. We were a little late when we arrived, but the radiation technician kindly smiled and told us not to hurry.
 

The noise of a siren behind the closed thick metallic door warns people not to get close. Radiation in progress, treatment in progress.

The tumour, as suspected, is indeed difficult to locate and treat. From the initial diagnosis of two days of treatment three weeks ago, it's now doubled to four. Which means, except for Sunday, we will have to be at the hospital almost every day this week.

At the end of the robotic arm is a giant pod-like structure, to which a highly focused laser lens is attached at the end. It is through this that the burst of radiation is emitted at key locations to kill off the tumour. The robotic arm moves around the patient, and with the aid of x-rays and infra-red scans which are constantly calculated to ensure the laser is targeted at the precise location of the tumour as previously determined by various scans that were conducted prior to the treatment.



I watched from a work station outside the operation room. On a screen, I could see four cameras displaying the room from various angles, each with mum's body on the "operating table" in view. The robotic arm moved around mum, slowly, and every few minutes or so a red light would come on indicating "BEAM ON", followed by a green light indicating "BEAM OFF". A myriad of numbers would flash across one of the screens, which I presume is the computer calibrating the location of the tumour to be targeted. Earlier, the technician explained that the device is actually derived from the automated assembly line of automobiles, which requires very precise instruments to ensure the metallic parts of a car are well welded together. In this case, the robotic arm ensures that the undesirable parts of the body, the tumour thus, can be 'zapped' away using intense bursts of gamma radiation. The technology uses 6-D (as opposed to the convention 3-D) imagining, so that the computer can 'see' from all possible conceivable angles and send the robotic arm to within an millimeters of the intended location.


He led us into the chamber, and upon turning a corner I saw the massive device which to this moment I had only seen in pictures and simulations. It was more futuristic than I imagined it, a gigantic robotic arm with a laser attached to the end of the arm. There were  with the capability of turning at any angle.

I watched the four little screens carefully. Other than the robotic arm moving in very close to mum's body, there was nothing happening. "Does it hurt?

"No, not a bit. She doesn't feel a thing," the technician explained, "Most patients get very bored and fall asleep." If the patient's body and target area is aligned well with the scanned image stored in the computer (to ensure accuracy in the laser targeting during the treatment), then the procedure should not take more than an hour, or an hour and a half at the most.

I sat outside the 'operating room' next to brother and waited. He took out his phone and began playing a game, while I got up and paced around a bit, occasionally peering my behind the technician to look a the various displays of the operating room and of mum's high-precision scan. It sounded and looked like something out of some sci-fi series, but it was very real, and it could very well be a life safer...

There was a moment, I felt like crying... At one point the technician sympathetically said: "I can understand your anxiety. My dad also had cancer. Hang on there..."
So much waiting, and the treatment has finally begun. How effective will it really be? Will it really clear away all traces of tumour in mum's spine? The doctor explained that scans the day before revealed two concentrations of cancerous cells, one in the lower spine, somewhere behind the intestines, and another higher up, somewhere behind the lungs and immediately below where an artificial spinal column was installed after the surgery. Other than that, there are no other traces, as far as they can tell, or at least, as far as the instruments can determine. However advanced and high-tech the technology is, there are limitations, for it cannot detect cancerous cells smaller than 1.25mm. If there are other traces, then further follow-up scans will reveal them...

Mum left the operating room within forty minutes, a speed which surprised both my brother and I that made us wonder whether something went wrong. We went inside the 'operating room' to greet mum, who lay on the 'operating table' and smiled at us as we entered. "Did you bring [my grandson]?" she asked, "I heard a baby crying outsie!" It was actually another baby in the corridor, perhaps not much older than my nephew. But I could tell, mum wanted to see her grandson, and I can only imagine it's because he brings her so much joy.

I looked at the CyberKnife machine from close up. Quietly I thanked it, even though we do not yet know how effective it is. It seemed silly, was it not, to thank a cold inanimate machine. But as I left the room, I imagined the dozens, hundreds of people who have laid there on the same 'operating table' and who have looked at as the machine quietly slid over their bodies and one by one killed off unwanted tumours. And now my own mother is one of these people, whose health and life depends on such a sophisticated piece of technology, who hope depends on the technicians and doctors who operate the machine from the room next door...

Treatment one ended. Three more to go.

What do you want me to do?

"What do you want me to do? I can't do anything."

I just wanted to talk, just hoped I could talk to someone who  could listen to me. Never once has my brother asked me how I'm coping, whether I need some support or comforting. Never did he ask about those first few days and weeks at the hospital, how terribly tiring and draining it was, or whether I needed help taking care of mum. It's as if it's my job, my sole duty, as if I don't have a life,  as if I don't have dreams and wishes I would like to fulfill.

Did I not have plans to start working and start preparing for my exams? Do I not long for some semblance of stability and calm in my life, something I've so craved for for four long years (or longer)? His response to my attempt to talk about mum's worsening health condition sounded like I'm causing him trouble.  "What do you want me to say? There nothing I can do." He was using his computer as he said that.

By this time next week, he will be long gone. And I will be here all alone to face all this, to shoulder the responsibility for mum's life and health. Will he see her again after he boards that plane in few days? Who will clean up the mess every-time mum throws up? Who will do the cooking and try to make sure she does not lose several kilograms again? Who will hold her hand, touch her shoulder and look her in the eye and tell her not to be afraid...?

I know my brother cannot do anything. I can imagine he is hemmed in and has a family to provide for, and that he has his own worries and needs to take care of. He has a family, a wife and a child, a mortgage and is  financially tied down.  But just a kind word, just something along the lines of "I appreciate what you're doing.." or "Hang on there..." is enough. But maybe it's too much too ask for.

"Mum is very, very lonely. And she's very depressed. She's often told me she wants to give it all up. That's why I ask you to contact her as often as possible..." I barely reminded my brother our mum doesn't have much time left... Somethings are known, and need not be said. And he knows it. My brother told me how very busy he is at work and cannot call. I do not doubt he is busy. But... "Not even five minutes of your break to call?" Then he said using skype via 3G has connection issues and bad reception. But I often call using 3G Internet, and it seems to work well...

He looked irritated at what I was saying. Perhaps deep down, he is feeling remorse and regret already that he's not done so much for mum... Perhaps he wishes deep down he could do much more and fulfill his duties as a filial and caring son... But I cannot know what he thinking. Perhaps the calm and nonchalance are but a facade masking his real pain and real feelings. 

I went to bed already... In my mind again is the sense of disbelieve and frustration, the latter accentuated by my own brother's complacency to it all... Perhaps it is his way of coping, of shielding himself away from harm an unhappiness and shielding himself from remorse... But I just wish one day he will wake up and realise it's not too late, and to be more  flexible and accepting if change and circumstances...

But brother is the  way he is...

Proposal

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Woke up extremely early, just after six to make breakfast. As she has plans to take extensive scans of her body, the nurse said she cannot eat anything after seven in the morning.

Mum ate, a bowl of congee with some greens and stir-fried egg and tomatoes in soy sauce, and some nuts.

Within ten minutes everything came out again...

I could eat no more, and my face became glum and heavy. My stomach started to churn, in the way it does when I'm under extreme levels of stress and worry. Last night just before bed she threw up. And now just after bed mum throws up again... Is it something I cooked? Is it because it's not good enough? I became upset... Very upset and moody seeing her like that. I know it does not help the situation at all. And what made it worse was that she kept apologising...

 "I'm sorry for throwing up... I'm sorry for being like this..." As if she can help herself... As if she chooses to be this ill and unwell. Nobody, nobody in their right mind, would choose to be afflicted with cancer.

 Nobody!

Mum's apologies were perhaps more upsetting than watching her throw up and bend over the toilet bowl. And every time, after she is done, I would go hose everything down and clean up any "mess" left behind.

My hurt and sadness turned to anger, not directed at her, but at the situation, at my own helplessness... I know, rationally and fundamentally I know it does not help to loose my calm and composure. I know I cannot possibly being around mum, who needs support and kindness, whenever she feels so unwell and sick. But after a month of constantly being there at her side, I cannot help but lose "it"... "Forgive me," I said, "I'm so moody and agitated these days, and everything is too much."

I was not angry or frustrated at get, but at the fact that I try and I try to make her feel better, I try and I try to cool her a decent meal with all the necessary nutrients and anti-oxidants, and nothing stays in her stomach. Her body, perhaps her cancer seems to reject everything in the last week almost... Reject and eject everything out of her mouth, making her feel so very sick and frail afterwards...

Naturally I called the hospital to call off the planned appointment for scans and tests. Once again, postponed to next week, the second postponement because mum simply is too weak to undergo further treatment...

I was so tired I fell asleep. For sleep is the only safe refuge I cab seek and find these days... Sleep and write and rave about everything I am experiencing now, about everything that is causing me such traumatic stress and a terribly headache.

"Go, go away for a few days..." mum said to me when I woke up again.

I was reluctant, but I know I need to. I am causing her pain to be in this extremely agitated and frustrated framework of mind. I even disgust myself with the anger and frustration I feel deep inside seeing mum so sick and in so much pain...

As brother will be around for two days, I decided it was time to go. Time for me to get away from it all and refresh my mind, rejuvenate my spirit. Immersed in such a high stress and at times deeply personal and helpless situation is extremely damaging to my mental and physical health. I can feel it...

Besides, it's time to give brother and mum some time alone, and in a way for him to see what it is I have been facing everyday for yhr past month, every few months for the past four years...


1657

I dozed off and when I woke up, it was almost time to get off. I looked outside the window, and in the not too far off distance was the city. I never really noticed how modern it has become, Taichung. So many skyscrapers, crowded in an urban sprawl, and in the background, mountains of central taiwan.

Did this city suddenly have more of an appeal to me now? Before, it was merely a place where I transferred on my way to the mountains. Recently, it is the hometown of my sister-in-law and her extended family. Could it be my new hometown?

In one of those rare occasions, mum, brother and I had a chance to be together and talk. We did that last night after dinner, and it was then that brother proposed to mum to relocate to Taichung.

"That way, you'll be closer to [my sister-in-law's] relatives, and they can check up on you more regularly..."

It was a great idea, one i was grateful for, and perhaps the most meaningful  way brother has contributed to mum's road to recovery. Mum seemed moved by that proposal. She needs a whole new start in life, especially if after the (now postponed) cyberknife treatment she does not wish to continue with any more treatment. Mum really has to leave taipei, leave the dreadfully crowded and polluted place and the wet climate of the north and go somewhere where the temperature is the mildest in the country. Mum really needs to leave behind the neighbourhood, which for the past few years, and even before that when dad was still alive, has been filled with memories of hospitals and doctor's appointments. Besides, Taichung is a place where she spent her university years, and though much has changed in the past three decades, I remember her telling me that she enjoyed those years there.

It doesn't have to be a permanent move, for she could just rent a place and see how things go. My sister-in-law's family know a lot of people, and they have been very willing ever since my brother got married to help mum. When mum and my brother's mother-in-law spoke yesterday, they said they could already start looking for a place. Of course most likely I'd have to spend some time looking at apartments on mum's behalf, but I don't mind that if in the end mum is in a city where there are many more people who can look out for her. And as my sister-in-law's family know a lot of people, they can easily find mum a carer who can come every other day or so to help mum with her household chores and even keep her company. At the moment, being in Taipei, there really is no one who is close enough, and there really is no reason keeping mum there. And mum does not need a full-time maid who is there all the time, for she is still mobile and can do most things on her own.

Of course, she would have to change hospitals, but she wanted to do that anyways because she feels her main physician has in recent times been less courteous, especially as mum went to operate on her spine with a surgeon not on her main physician's recommendation. But that is just petty rivalry between big egos and mum does not need to get worse health care and attention just because of that...

The proposal to move sounds very tempting, and very assuring. Being surrounded by relatives (for that's what my sister-in-law's family are now...) has benefits in that mum can be less lonely, will have people she can interact with and help her if need be. And she will be much closer to the countryside, to the monastery She likes to visit, so she can go more regularly and be inspired and encouraged by the monk's teachings.  In Taipei, where she is now, there is her one or two close friends, who only come around once in a while. Otherwise, mum spends most of her time alone at home, watching tv or in front of te computer...she tells me she is frustrated and lonely, and I can see it, I can feel it...

It remains to be seen whether the plan will work out. "Move for yourself, only because you want to, not because you feel like it's best for my sake," I said to her. Part of me is afraid she is moving because she does not want me come back here to be with her, and that by moving I can be more assured she is surrounded by people who can care for her more and more often.

So it remains to be seen if it'll all work out. But I smiled at the proposal, and hopefully it will bring mum positive new changes and a new start in life.

Treatment or not?

...so scared... So very scared and crying for no particular reason I can think of.

A new treatment may be about to begin today, mum's last hope as far as the spine is concerned.
But she does not want to go. She has been sleeping poorly, and threw up again this morning after the breakfast I made...

She is physically weak, and I think mentally dreading the treatment...

Talk

It's rare that brother and I have time to really talk these days, especially as we live on different parts of the world. Even though he's been back for almost a month, most of the time he is away in his in-law's city, or sitting in front of the television.

The last time we had a heart-to-heart was probably just after dad passed away and around the same time when mum began her first chemotherapy treatments. That was already  four years ago. Again, sickness and death brings people together...

I sat down on the floor and began what I wanted to say about mum's condition. He listened t what I had to say about stopping treatment and just "letting things be". And he threw the question back at me: "What's going to happen then?"

I honestly do not know what will happen. The worse case scenario is that the cancer will start to spread dramatically, and there will come a point when mum will experience terrible pain. But between then, if and when 'then' comes, and now, at least mum can enjoy a relatively quiet life and not have to pop into the hospital every two weeks for treatments, appointments and the nausea and misery after the treatments.

Brother listened to me as I told him how mum has on numerous occasions told me about her intention to "end this all", about how the continuing treatments are eroding her will to live and tiring her (and tiring me too...). I reminded him that it was four years she went through chemo after chemo, and how every few months for the past four years, I come back to be with her. I reminded him that ever since her retirement last year, she has been doing treatment... December, March, April to June, two months of travelling and then resuming treatment again in September, until December, until her recent surgery.
If this does not mentally and physically erode someone's spirit and body, what will?

"What's going to happen when she stops treatment?"

I can't say...

But he believes she should continue with it all.

Rest in peace...

"People have to live their lives anticipating separation..."

I could not help but cry. I wrote about Beany (豆豆）about two years ago. Headline news today: "Little Cancer Warrior Beany left".

Reading the story touched me very much. The nine-year old boy has been in and out of hospital for three years battling neurblastoma, a rare form of cancer that affects the  nervous system in children and infants. He never cried in front of his parents, he never complained of hardship and wanting to give up in front of his parents, for fear of hurting his parents. Just before he left this world, he told his mother he did not feel his illness will get better, and when it comes to that day "please do not be sad everyone!"

What is amazing about this boy is his optimism and care for the wellbeing of other people.  Even when he was really unwell, he would ask how his brother and his sister are doing. He told his classmates who came to visit at the hospital to save a seat for him for the day he returns. And in order to help cover medical expenses, he was often seen at the side of the road helping his parents sell sweets and candy. Again and again, the family refused to accept donations from people, even when Beany's condition caught the news media.

Dozens of chemotherapies, several surgeries later, cancer still won and took this little, brave angel away from this world.

What was the purpose of his brief nine years on this world?

Perhaps to inspire other children, for his struggles and life story has become a chapter in the local school curriculum.

What was the meaning of all those treatments and pain he had to undergo?

Perhaps to show his parents, his siblings the meaning of love and how it can bring together a family, even facing the direst of circumstances.
 In those final hours, the nurses who have spent months taking care of this beautiful, bold boy sang the song to him: "Can only miss you"..

Rest in peace, Beany... A lot of people have been touched by your courage and your innocence. You have given me another reason to be strong, to care, and to love, no matter what...

 (translation mine)

Love, lost love cannot be asked back.
I still have words I want to say to you,
[I] cannot bare to say them, [I] cannot say them in time.
The words at parting are the most difficult to come out of the mouth.
You will find new life,
I will collect my sadness,
Believe everything was worth it.

Let go and go!
I wish you good fortune and happiness
Fly freely with angels at your side.
Let go and leave!
Except for remembering the radiance of your smile and voice,
[I] can only miss you…