Confusion

Mum had such a confused and frustrated look on her face. She kept on calling my name: "Weiwei... Weiwei..." The way she called me broke my heart.

"What's wrong, mama?" what's wrong? Are you afraid? Don't be afraid. I'm here by your side..." I stroked her head, played with her hair. I grabbed her hand and held her hand tightly. "I'm by your side. Let go. There's nothing to hang onto. This body is not ours, what matters is the heart. Think beautiful things, beautiful memories. You've struggled long enough. Soon it'll be over, mama. Let go..."

I smiled at her, but inside I was tearing, and tearing apart. These words... These words... I spoke similar words to dad just four years ago, and now again, I am saying them to my dear mother. She can hear me, I know she can hear me, feel me, feel my touch, feel my love. I know she can. I know she can...

"Weiwei..." she cried out again, agitated and obviously in great discomfort. She didn't say anything else, just my name. Did she have it in her to say more? Did she have words or thoughts she wanted to empty? In the background mum's favourite cd was playing. Nana Mouskouri, perhaps mum's all time favourite singer. I found the cd while I was home briefly today. Perhaps there is a reason why after so many years, I happen to stumble on the long lost cd in the cupboard. Everything happens for a reason...

I held her hand even tighter, and kissed her fingers. "Don't be afraid, just let go..."

Mum's stomach gargled loudly, and on her face was an expression of pain and agony. "Let go, mama, just let it out..."

Pain and morphine

"Doctor, the pain in the stomach...?"

"I just felt her abdomen, and it's bloated from the retention of liquids. We haven't done any scans yet, but most likely the cancer has progressed in the intestines, causing the swelling and occasional pain," he explained, "We can give her some morphine. Small doses to start with. It'll make her feel better." I thanked him, and he bowed his head gently before walking away.

I walked back into the room, and mum was languishing in bed. Today, more than ever, she has been very restless and asked to have her body shifted several times due to sores. Mum has become so weak that she cannot even shift her own legs, let alone turn her body so that she's not lying on just one side. These are signs, I fear... (but then again, I am not a trained medical expert...)

As the carer took half a day off, it was just my brother and me taking care of her. For much of the afternoon, mum lay there in bed with a lot of discomfort. At one point the nurse did come with a syringe containing the painkillers (3mg of morphine) which she injected into mum's IV. Mum felt a bit better, and within an hour or so fell asleep.

Mum spent most of the day in a state of waking moments of daze or sleep with her mouth open. At one point, she opened her eyes and saw me sitting by her side. She whispered (maybe not intentionally, but what sound she manages to muster these days is no more than a whisper): "I know it's been hard on you seeing me like this..." Mum's voice is almost inaudible now, and every-time I really have to strain close to her ears to hear her. I reassured her I would have it no other way. "I know, I'm very lucky. Even the monk said so..."

"Isn't this the best you could wish for? So many people who care about you, so many people coming to see you. You're with your children and grandchild. What more would you like? Would you like the president to come see you?" I joked. (It really was a joke, for the current president is an incompetent fool who's policies are jeopardising the survival of my homeland. He is not welcome here. I'd lynch him and shout abuse at him if I had the chance...)

"Would you like to go home?" I asked her. I told her about the dream I had the other day, the dream in which I was by her side at that final moment and when i said "Let's go home..." Mum weakly shook her head. I asked again whether she would like to be at the hospice or be at home "when that moment comes". 

"Here... I don't want to scare any of you..." mum said weakly.

"You won't scare us!" I said. By "scare" she means that she doesn't want to appear in her spirit form and frighten us after she passes, for according to local beliefs the spirit of the deceased will remain in the place of death for some time, often "haunting" the place until  the spirit can find a final resting place. "It is your home, you can go back to if you want to, if you feel most comfortable..." Mum dozed off before she said anything else. I held her hand for a little longer before I let go.

While talking to a nurse, I learned that fluids collecting in the stomach ( the medical term is ascites) may be caused by the thinning of blood vessels which cause whatever fluids in the circulatory system to escape into the body (whereas normally the fluids are contained in the blood). Another possible cause may be due to liver disease, and failure of the liver to process and reabsorb the waste fluids of the body. Both possibilities may explain mum's bloated stomach, for since last week the nurses have been unable to draw any blood from her veins, for they have become too dehydrated. It is also likely that mum is suffering from liver disease, as the bile fluids are unable to completely come out of the body, and the build of bile is not only causing jaundice, but also affecting the normal functioning of the liver...

Does it matter what the real reason is behind mum's latest complication? The reason we are at the hospice is not to treat, but to alleviate pain and suffering. And the first administering of morphine is a step in that direction. A worrying step, because I have seen before what morphine can do to her mind.

For most of the afternoon, I was pensive, a little shaken and saddened.  Mum ate next to nothing today. The bloatedness of her stomach and perhaps the morphine made her have even less of an appetite. The few moments when mum woke up, she is lost and confused, more than ever before.
At one point, just a little after six in the evening, and after sleeping for two hours or so, she woke up and murmured: "Why are you here? Go to sleep! It's still so early..." She thought she had slept all the way through till the morning. An hour later, she woke up, opened my eyes and saw me sitting by her side. She said: "It's so late already! Go to bed. Don't sit there..." Is it the morphine, or is it her malnourished body and brain that is causing her to have difficulty comprehending time and what is happening?

I do not know. But this is the way mum is now, and her condition seems to be deteriorating rapidly.
I sense a new stage of illness and difficulty has come.

Deterioration

Mum heaved from a shortness of breath, and her body trembled terribly. She could hardly speak from the trembling. I watched in horror and in pain as the next couple of hours of drama unfolded...

Late afternoon, around three or so, mum suddenly complained that the room was getting very cold, even though the temperature was set at twenty-five Celsius, and outside it was one of those hot and humid pre-typhoon days when all the clouds have been more or less sucked away. We put on two blankets, but still mum was cold. My plan to take her out for a little walk in a wheelchair, which would have been her second outing since my return five days ago, had to be cancelled. She was in no state to get up.

For a good while, she remained cold and ran a low fever. Brother and I sat by her side, and I stroked her hand and arms continuously to try to warm her up. She was short of breath, and gagging at the same time. She looked so scared, so very scared. I too was scared... "What if today is that day...?"
My mind kept on having this uneasy feeling that something was happening, and for the most part of the afternoon (and even now...) I felt such a terrible headache and dizziness.

The nurse came in frequently to check up on her and monitor her vitals. Even the nurse was lost as to why mum was having a strange episode of trembling cold and shortness of breath, even with the oxygen tube attached to her nostrils. She had no appetite whatsoever, and only drank half a cup of Ensure supplements and half a cup of blended juice. That was it for the day...

I don't know why but I have such a terrible feeling... Terrible feeling. It was not quelled when in the evening mum said at one point, so weakly: "It may not been long..."

For much of the day, since the start of the breathlessness and trembling spells, mum lay there in great discomfort. I can see it on her face, I can see it in her eyes... There is such fear, such fear for the unknown...

And I too am plunged into this dark spiral of despair and helplessness, and struggling hard to find my footing and be strong...

Mum's condition

"How is she?" i asked as two aunties left and headed to the elevator down. They came to spend a few hours with mum after choosing clothes for mum with me. Clothes for when mum...
I stayed home to rest for a little while, and also to cook some soup for mum.

"The condition is not good. Just let things be..." one auntie said. She used to be a nurse, and she has been so caring over the past few years, calling every day almost to check up on mum, and visiting her every week. Sometime ago, this auntie said that according to taiwanese beliefs, many critical ill people do not live for long after or before a big festival. The upcoming one, Dragon Boat Festival, is in less than a week.

"Last week she had more energy and was more talkative. Today she looks very unwell..." The aunties tried to give her some traditional noodles to eat, thinking the noodles would bring back nostalgic memories and tastes of the past. Mum are two bites, and threw up four mouthfuls... When I came in, she looked in worse state than she was just four hours earlier when I left her to go home and meet with the two aunties.

"She does not seem able to control her bowel movements. She doesn't seem to know whether she urinated or pooed..." I heard that, and felt such a deep, deep sense of sadness. My own mother, now unable to control her own bowel movements. Her dignity and worth is being further eroded. How she must feel...

"Thank you... Thank you for coming and spending a valuable weekend day off with her..." I said and gently bowed.

"Please don't say that. You and your brother have done a lot, and you should not feel so sad. Just let nature take its course," one auntie said. They praised mum, said how lucky and fortunate she is to have us as children, and to be surrounded by people who are there to help and support her in different ways. "It is because of her kindness, and all the merit she has accumulated..."

Humbly I bowed again and bid the aunties farewell. "Thank you..."

I returned to the room, and mum was almost asleep. The carer is patting her back to make mum comfortable. Mum opened her eyes, her tired eyes which had dark circles around them. She blinked quickly, something I've noticed she does more often these days. "Ask them to go already. It's too late..."
She meant ask the aunties to leave, because they have spent an afternoon with her. But the aunties left around five minutes ago. That did not register with mum.

Perhaps mum is too tired that she is not fully aware of what is happening around her. Brother told me that she has become like that since last week, and today was the first time I noticed this "lag" in her response. The doctor said deficiency in ions and nutrients may cause sensory neurones to slow down the passage of messages to the brain and slow down memory. Whatever it is, it is painful to see.

I smiled at mum, and held her hand to reassure her. "They've already left. Don't worry, you rest now... Take a good rest. I'm right here next to you..."

I am. And I will be till the end.

Clothes

160612.1517

I almost cried. It was harder than I thought, and made even harder due to the fatigue I was feeling from the jetlag.

It was so easy the other day to ask mum about what dresses she likes and what she'd like to wear. But rummaging through her wardrobe hit me hard, even though there were two aunties next to me and helping me choose. I knew best what mum likes and what looks good on her. And I needed to choose four outfits for her. One would be bagged and I would have to take with me to the hospital clandestinely. It will only be opened after she passes...

I took out that dress, I knew which one exactly. She wore it first in the summer of 2003, almost a decade ago to attend brother's graduation in London. A black dress with beautiful green embroidery around the waist, to which she liked to add a colourful cape to make brighten the entire attire. She wore it last last year to attend the wedding of her best friend's daughter.
She looks so young and elegant in that dress. The next time she wears it, she will have stopped breathing...

I stroked the dress, felt the soft fabric and tried to contain my emotions. It is hard, so very hard to know next time I see this very dress mum will have gone... How do you deal with that? How can I go about rummaging through her wardrobe without her knowledge, preparing for her demise? All she knows I came home to shower and rest...

But my mind is restless and so very heavy... As heavy as the unusual onslaught of downpour that has caused several deaths and flooding all over the country...

To the dress we added her wig, shoes, socks, and according to tradition we must also prepare a pair of white gloves. more sets of clothes have to be prepared, clothes which will be 'offered' to her by burning them after she passes. But that is for another ritual, which takes place only on the hundredth day of her passing...
How can we even think of that day when mum is still around?

Carefully I bagged the sets of clothes and placed them under mum's bed. One set, the one for mum to change into when that final day comes, I placed into my backpack and planned to sneak it into mum's room.

One more thing done in preparation for that day...

Unable to eat

I asked this question before: how long can a person last if she were unable to eat?

Brother said he has been trying to see if the hospital can send someone home to administer iv nutrients, because frankly what mum eats during the day is not enough to sustain her bodily needs.

"She told me again she wants to go to the hospital..." Which is something rare, for she detests hospitals. But perhaps she feels that she cannot go on for long without proper nutrition. "But don't worry, don't rush back here. It's not necessary..."

Moments later, mum came on the phone. She "complained" that calling twice a day is calling too often. I tried to joke that it's just breakfast and dinner. I don't call at lunch, because it's far too late for me given the time difference.

"I have so little 'meat' on my arse it hurts to sit long..." she complained. Those words seemed to slide over me, and I did not have a response. I was not sure what I could say that did not sound fake. And truth be told, I was rushing to catch a flight to go see my ex in a last-minute decision I made just a few hours earlier before I fell asleep.

"Nothin tastes the same anymore... I had some grapes and they tasted spicy," mum said. Spicy, as in the taste of chilly. How can something sweet taste like chilly?

"I did have a cup of fruit juice, which your brother made, and I finished it all. But I felt so bloated after that..."

I did not have a proper response to mum's complaints. What could I say? Really, what could I say? So very very little...

Downhill

"The nurse said she's seen many cases like mum's," brother said. I heard what he said, but there was no expression on my face. "And it'll only be downhill for now..."

I heard what he said, there was no expression on my face. But deep down, somewhere hidden from sight, I am hurting again...

Lump

Mum looked like she was in a lot of pain. When asked what it feels like, she cannot say. "Just discomfort all over..." The problem is mainly in the bowel area.

She asked me to rub some mint ointment on her belly, which to some degree would alleviate the discomfort of bloatedness she feels.

There was a visible and touchable lump to the right of her latest incision. It felt hard and abnormal. It was the source of much of mum's current discomforts...

"How hard it is on you..." I kept on saying to mum. It may sound condescending, trivialising, but not combined with the way I would rub mum's back whenever I said those words to mum.

It really has been so hard on her. She seemed to be recovering and was so hopeful toward the end of last week to be discharged, but her skin turned yellower and yellower, and her appetite (and hence also strength...) deteriorated and deteriorated...

Tomorrow a small surgical procedure is planned to insert a tube to drain bile from the inflamed gallbladder. That should relieve the bloated feelings and hopefully make the jaundice subside with time. After some googling online, I came across some startling news. Jaundice may also be caused by pancreatic cancer... Could it be? Could it be...?

How hard it has been for her, to be so tormented by her body, and over the past few months, to have to deal with issue after issue after issue.

I hope and pray, hope and pray that mum can go home soon, for she needs to be home, she needs to be reminded that there is a world beyond these hospital walls.

For the longer she stays at the hospital, the weaker her resolve is, the more she is growing weaker in mind and spirit...

Vomit

Happily, I rushed to the hospital thinking I've made something mum can finally enjoy after so long of not eating. Earlier, for lunch, I made her what she requested: egg fried rice with smoked salmon and chopped onions ad carrots. She ordered it, and I delivered it. Imagine my joy when she finished half a rice bowl of my fried rice, and even a few small slices of wax-apple and loquat!

Yesterday, the nurse came in and provided us with a list foods mum can now eat. The focus is on foods that are not too acidic (dairy and red meat are no-no...) and low in fibre, so that the intestines and digestive system can get used to digesting and expelling excrement after such a long break. Also a low-fibre diet can give the intestines time to repair and get used to the flow of things.

So for dinner I made fish soup, as recommended by the nurse, for fish is high in protein-- which mum needs for repairing her cells after surgery. And I cooked her some soft greens, a soft boiled egg, and noodles and added a bit of tea-tree oil, which is very good for lubricating the digestive system.

She took a bite of the noodles, and the smell of the tea-tree oil made her gag. She continued eating, because she did not want to disappoint me after I cooked her and excitedly brought food to her, but within minutes she was gagging and choking. Her stomach could not get used to the taste. Se gagged and choked for a while, and with each sound, each contorted facial expression, my heart ached... I was upset she could not eat what I made hr, but even more upset she was sort of forcing herself to eat because she did not want to disappoint me. "Why would you put your body through something like that? Why would you keep on eating if you didn't feel well with the first bite?!"

I cleared away the bag of vomit, and she leaned back on the armchair and looked so tired and deflated...

We are still not in the clear yet...

Leaving in the morning

Never leave with anger, I've always told myself. And I try to do that. But this morning I left the hospital feeling very upset. I turned to look at mum, sitting there on her bed. A few moments earlier she told me repeatedly to go home, saying I'm not needed anymore. "Go home and think about your temper," she said.

Yes, my temper has been bad these days, made worse by frustrations when I ask her what is bothering her and she does not answer. And yesterday was the long angry exchange, where she listed all the things that I've done that are so wrong. Ok, I'll go home and reflect and repent. Really, all this time staying with her, all the things I do and not asking for anything in return, and mum bites back with all the things I do wrong or not good enough. Well, not good enough is the best her son can give her. Anything more, then she needs to hire a stranger and pay that person to provide what it is that mum needs.

I walked home, almost in tears. I wish I could be more patient, more compassionate, less angry whenever she scolds me or tells me to go and leave her. I wish I could be more tolerant and not be affected when she scolds me or talks to me in a angry and moody voice.

I must tell myself again and again, remind myself again and again, mum is unwell. She's feeling a lot of discomforts, she is not able to sleep well. And she's been starving for weeks. Of course she'll be frustrated, of course she'll pick on little things and make it a large issue. She is frustrated because before, for such a long time, she took care of me, and now the roles have dramatically reversed, and she feels terribly guilty that I am spending time being by her side, trying to take care of her every need. I imagine she ia angry and moody because she feels she's burdening me, slowing my life down....

I must be more compassionate, more forgiving, more understanding... I must not get angry at mum, must not shout back or be rude and hold a grudge. I must meet her anger and frustrations with equanimity and kindness.... I must not get swayed by heat-of-the-moment anger or moods.

I will swallow everything and turn whatever setbacks or scolding into more care, more love, more compassion to make sure mum is more comfortable as she goes through this physically and mentally difficult period of being ill...

Tears...

She called my name and I thought she wanted me to do something for her, so i approached her bed. but she had her eyes closed and was sleep talking. Mum mumbled something, half asleep, perhaps dreaming and seeing things. "Affair...", "Traffic..." I could not make heads or tails of her speech or what she wanted, if anything.

I instinctively reached out my hand and stroked mum's head softly and whispered "Sleep well..." Silently, in my heart I said "I love you", "Please forgive me...", "I'm sorry for all the wrong I've done to you..." My eyes flooded with tears. I felt so sorry for her... So terribly, terribly sorry for her, and I could do nothing for her. I know a lot of the things she accused me of doing wrong earlier were said because she could not bear to see me spend so much time being with her and taking care of her... I know she is angry and frustrated that she has become so dependent, and that I am shouldering much of the burden (nowadays). I know she cannot control her temper, because her bodily pains and the drugs are causing her to say things beyond her control... "Get iodide powder. I don't need the hospital to stamp it. We can go home..."

I cried even more as she said more things that did not make sense. At one point, she wanted to press the emergency button to call the nurse in. But I took it away from her, and lied to her that I'll call her myself. She was really delirious, and her mind seems to be conjuring images and thoughts beyond her control. "Just go to sleep," I said, and again stroked her head softly like I would trying to woo a baby off to sleep. I felt this sudden pain again seeing mum like that, hearing mum talk nonsense, and it scared me how much her health, both mentally and physically, has deteriorated over the past month or so. "Just go to sleep," I mustered the words to say, "And don't think too much. What happened happened already, nothing matters any more..."

When you love someone so much, when you would do anything to make that person comfortable and cared for, it breaks the heart to see her gradually lose control over her body and mind. These tears that are flowing so uncontrollably come from this deep, deep sense of pain seeing mum so lost and so confused. I hugged her legs, stroked her arms, and more tears flowed. "I love you so much... It breaks my heart. It breaks my heart so much to see you like this... Sleep well, mum, sleep beautifully...."

Dream

After mum was wheeled into the operating room, I went up to her room to take a nap. I suddenly felt so very, very tired...

I was at the waiting area, I was not alone but with two of my cousins (from dad's side of the family). I was just sitting there waiting, playing with a piece of paper or something.

Suddenly I got up and went to the area where there is a big display board. The name of the patient being operated, what illness, the status of the patient were all displayed on there. (in the real world, there is such a display board, but it shows only the name (partly blanked out) and status of the patient: currently in operation or in recovery room).

In the dream, I saw mum's name. Behind her name in big flashing red letters, "BYPASS SURGERY", "FAILURE", "PATIENT DECEASED".

My heart tore into a thousand pieces, I broke down there and then and began howling, inconsolably howling and crying. So much pain, so much tears! My cousins rushed to hug me, but they could not touch me, for I shrugged them off and was beyond comforting. Mum was gone, and I didn't even say goodbye...

Such powerful emotions...

I woke up in a sweat.

Pre-surgery preparation

The nurse showed us a video explaining the procedure and what the patient and the relatives have to be aware of before and after the surgery.

Mum says she's seen it before, back in December when she had her last surgery. A lot of the information I know from practice, after I returned and was suddenly thrown into the "deep end" of taking care of mum.

Breathing exercises, getting out of bed, exercises of the limbs, lung expansion exercises, phloem extraction, etc, etc... To think, just three months ago, mum went through all this, and how wrong I was then to think that that would be the last major procedure mum has to go through...

I suddenly have these pangs of fear, exacerbated when I look at mum and see how sickly she is. She is so thin, so frail, in a lot of discomfort. It really pains my heart, really wrenches my soul seeing mum like this, and knowing that this time tomorrow she'll most likely be in the operation room...

I am so afraid... Never have I felt such levels of anxiety, and tomorrow I will know what it feels like to be waiting outside the operation room, to wait and wait and wait and wonder what is happening, wonder if mum is still ok, if mum is still with us... But the doctors know what they are doing, I must trust them and have faith in their professionalism. All I need to do is sign the agreement to proceed.

I will be all alone tomorrow... All alone while I wait and wait.

CVC and TPN

The doctor suddenly came in and presented us with the fact that mum's nutritional intake may not be enough for the impending surgery. He recommends the placement of a CVC (central venous catheter) in order to conduct TPN (total parenteral nutrition), which is reserved for patients who cannot take in food the "normal" way.

He came back with a nurse, and right there, on her bed, injected a massive needle into a vein on the side of mum's neck. Some local anesthesia was administered, but still it does not completely remove the pain that lingers on. This is all in preparation for the intestinal bypass surgery, planned for tomorrow.

Already, mum has a tube sticking out of her nostril, two tubes going into her port vein, and now two more places on the neck where tubes can be connected to. It's not a pretty sight, and again the question that arises: what are they doing to her? Is she soon going to be free from all these tubes and invasive treatments...? Will any of this work to "treat" her inability to ingest food and even water, or are all these procedures just prolonging her pain and suffering?


Mum is lying there, now even more lethargic and perhaps in even more pain than before. And it is so difficult, so very difficult to bear...




PS: something I read on Wikipedia (the most reliable source of information, I know...) worried me:

There is no evidence to support the idea that intravenous nutrition 'feeds the cancer, not the patient', but weight loss with advanced disease is significantly more complicated than simply replacing calories as cancer produces a multitude of chemicals that also lead to weight loss, and giving extra nutrition does not prevent this.

Killing her softly

Am I really so evil, as mum implies, and do I really want to just send her to the hospice and let her die there...?

Another eruption this morning, as mum was moody and so was I. She kept on telling me go get a carer, which I have already asked for yesterday. But since it's a big holiday coming up (Tomb Sweeping Festival) a lot of people are off and it's hard to find someone. I think she's getting irritated because I'm around most of the time. She worries that i might get too tired, but what else can i do? Now there's only me, and noone else. I'm just waiting for a call from the agency to send someone over.

Perhaps it's me who's getting irritated and frustrated of all this waiting and just seeing her get thinner and weaker, surviving only on IV drips. But really when we're together, except for music or the tv in the background, there's very little talking. I can only watch her lie there, seemingly in a lot of discomfort, and yet when I ask her what's wrong, often she doesn't say anything...

Am I doing something wrong? I'm just here standing by to do something if she needs me to. What is wrong then?

Again she said I just want to send her to the hospice and let her die. But I never said that. Why would I even want that? How terrible that would be! She said she wants to five the bypass surgery a try and that she has faith in the doctors. After she said that, I stopped raising issues about risks and about the surgery being too risky in her state of health. It's not for me to assess, but for the doctors to know what to do best and what the risks are. I can only stand by, and with what rudimentary knowledge o have of medicine, let mum know what the doctors told me and what I fear are the likely consequences...

How painful it feels to be so misunderstood...! Is the problem really me, me being stubborn and too conservative about taking risks? It's painful to see mum get so upset... I'm just trying to do my best, but she seems to think I wish her to die quickly and die a painful, slow death from starvation...

Misunderstood

"You have to think about it! You can't just hand it all over to the doctor for the doctor to decide! It's your life, your body!" I was getting emotional, unnecessarily so, for being so may have just diminished what I was trying to say.

One of the doctors in the medical team charge in charge of dealing with mum's inability to eat came in this morning. He said after careful consideration, and after the failure of the NJ tube to fully enter the intended area of the intestines, the only option remaining is bypass is surgery. He did not say whether or not we have to proceed, but if we do want to, the earliest that it can be done is coming Tuesday.

"Think about things, mum. You don't always have to do what the doctor says." In this case, the doctor has not said anything concrete yet, but just presented the option of surgery. And to me at least, they presented facts that they have not presented to mum.

"I'll let the doctor decide," mum said. I don't know if she thought things through, or perhaps she is too tired and starved to think... I asked her to consider the bigger picture, to consider the risks, and to remember that perhaps a month or so after the surgery, she may end up in the same place as she is now: starving, unable to eat because the intestines have been clogged up again by the tumour spreading.

"What do you want me to do? Just starve to death? Send me to the hospice and wait to die?!" Mum reacted angrily. From her words, it seemed clear she misunderstands me and has not understood what hospice care means. She, and my aunts, believe I am completely against all treatments, including the NJ tube and surgery. They probably think that I want to get rid of mum as soon as I can, so that's why I'm been eagerly promoting hospice care. But I just would like mum know there is an alternative to pressing forward with treatment, to getting your body so tormented by cuts and poisoned by medicine that one by one things begin to fail. The alternative is not pretty; starving is not a pretty sight or feeling... I've seen how starving has eroded mum's body to just skin and bones, and it's scary. But what is the lesser evil, what is less torturous: starving or going through surgery, through the long period of recovery and most likely needing to starve yet again some time from now as the tumour spreads and blocks ofd more passageways in the small intestines?

I felt so wronged... "You're my mother! Why would you even think that I want to get rid of you? You think I'll be so free when you're gone?" Mum just retorted that she does not need me by her side, and that she can easily someone. That only added salt to the wound...

I truly just want her to suffer less, to not suffer needlessly and for any period of time. What is the point of living then if everyday is just waking up to suffering, sores and bearing with pain? I never said I'm opposed to the surgery, for ultimately it is her choice. As I told her, it is her body, her life. Whatever happens, she is the one who has to bear the physical pain and the mental torment that comes from feeling pain and sores almost every moment of the day. I cannot bear responsibility to decide something as important as mum's life, especially a course of intervention that could very well put mum's life at risk. "I just want to give you the bigger picture, to tell you what I know from the doctors and what they have said to me. You're my mother, I want what is best for you..."

Fluoroscopy

Mum looked so forlorn and so afraid when I left her. I patted her legs, and before the assistant covered her body with a blanket, I held her hand. Tightly, reassuringly, warmly, not letting go, even though her grip was so weak it was almost non-existent.

I didn't say anything, for the assistant was explaining the procedure and trying to calm mum down. I would have said: "Hang on there, I'll be right outside! I'm here with you." I can only hope the grip of my hand, and the smile I flashed her told her so much.

I could have missed her completely before she went into the fluoroscopy room. I was running an errand and went to the post office to mail mum's doctor's notes to my sister-in-law, just in case she or my brother would need it. When I returned to mum's room, the bed was gone, the room was empty. I was afraid of not being there before mum conducted the NJ tube insertion procedure. I imagined that mum would be frightened, for this is a resort she never did really warm up to, and I wanted to be by her side. The nurse who tends to her confirmed that mum had already gone down to have the tube inserted.

I ran down the stairs, 9 floors down to the second floor. Waiting for the lift, and most likely needing to stop on every floor, would have been excruciatingly long.

Is there such a thing as fate? Were things somehow destined to be, for is arcane knowledge and aimless wanderings around the hospital not so aimless and not so arcane after all? I had done some prior research online about how an NJ tube works and how it is inserted. I know from my browsings that a fluoroscopy (sort of xray) is needed to ensure that the long, long tubing is directed into the correct passage once it goes down the nostril. One wrong move, and it could go into the air duct, and down into the lungs, causing severe damage. And by pure coincidence, the other night as I took some time alone to walk around a bit after dinner, I wandered into the area of the hospital where fluoroscopy is conducted. Coincidence? Or meant to be?

Mum is inside now, hard to imagine that she and I are separates by a mere few metres. What anxieties is she feeling? What discomforts? What sense of loss of dignity and powerlessness as she watches with wide open eyes as a very invasive and long tube is inserted down her nose?
I cannot imagine her fears, I cannot imagine how she is feeling. I cannot imagine how I would be feeling. I cannot imagine how I could comfort her, reassure her afterwards, when I see her with a tube hanging out of her nostril, that things are still normal. I cannot know how she will feel, how I will feel. Such fears, such unknown fears, such crippling fears!

We had a hectic morning. The main Colonrectal surgeon came early, around sevenish, and I had a chance to ask him about mum's condition in more detail. He said he fears that the NJ tube may not be able to pass through the blockage, for the tumour may have completely blocked off the opening into the intestines. This may explain mum's severe, and increasingly severe, vomiting of stomach fluids, because there may simply be no way down.

Surgery is a possibility, but one the surgeon wants mum and the relatives to decide. He cannot and did not say we have to do it. He was honest and frank in the way he presented the facts and risks, like a true, moral doctor would. I know that the situation inside is not pleasant, that there are multiple growths in the intestines and colon even, from the images I've seen. But the doctor cannot say for sure how (bad?) the situation is until they go inside. It could be that the linings of the intestines are festering with cancerous cells, which will make healing after surgery very difficult, if not impossible. The surgery may not kill mum, even in her state of health, but the question is whether mum can survive the recovery and rehabilitation after surgery. Just the spinal surgery took her close to two months to recover (though, it is hard to tell, for in the mean time, she began CyberKnife and also began to vomit...).
How would an intestinal bypass affect her body and overall wellbeing, both physical and mental?

My aunts (mum's youngest sister and mum's first brother's wife) were outside the fluoroscopy room, and another aunt (mum's second brother's wife) and a friend of mum's have arrived since mum entered.

Five people all waiting, all hoping, all ready to rally around mum as soon as she exits from this very invasive procedure.

Around this brave heroine, who fights and struggles, who preserves and rarely flinches or cries, there is a group of loved ones and precious supporters who will be there till the end...

NG

It was close to one in the morning. The nurse came back with the night shift doctor after I called her and told her about mum's latest vomiting session. Half a bag-ful of stomach juices. The doctor estimates it is about 300ml. Third time since around eight at night, sixth time Since the start of day. The latest time, Mum just kept on vomiting, vomiting, vomiting for around a minute. My heart kept on breaking, breaking, breaking...

The doctor suggested Inserting a tube to extract excess stomach fluids. Not the NJ proposed earlier, but an NG tube, nasogastric tube, which extends to the stomach and either with the aid of gravity or with the aid a pump can draw out excess fluids that otherwise would come out through the oesophagus and the mouth.

"No, no, I don't want [to] insert the tube! No... Too painful..."

Mum's answer was clear, and the nurse and doctor both agreed it may be uncomfortable and "in the way". Of course it would be! something is going through your nostril and down into the stomach! "But it's what I recommend if you keep on vomiting," the doctor said.

Mum looked so drained, so tormented by her body and the uncontrollable vomiting that has disturbed her sleep for so many nights and seems to e getting worse every night. She was curled up again in a foetal position that even for me, being very flexible and soft-boned, looks very uncomfortable. She was displaying a sign of helplessness, of fear, of dread, as if she wanted to be shielded away from everything that hurts, everything that causes her more suffering, more pain!

I recommended her to sit up and try to sleep on a chair, so that perhaps the stomach fluids won't so easily flow up and escape through the mouth.

I held her hands and massaged them... Silently, I hoped and prayed as I held her hands, her pain, her suffering could be temporarily relieved...

Life choices

I somehow felt uneasy about going home to sleep last night when my aunt offered to take the night shift. The doctor always comes early for his routine visit, and I always want to be there to listen, take notes (figuratively) and ask questions if necessary. But I hadn't been home to sleep for almost a week, and was getting very tired. And I know sometimes I need to let go and just let others take over from me, or otherwise I'll over-exhaust myself.

So I went home, slept almost immediately as I got home. Even though I was in the comfort of home, away from seeing mum vomit (and away from the worst night of vomiting ever...), I slept poorly, and woke up two three times from dreams... I set the alarm for six thirty, and made a point to getting to the hospital by seven thirty.

I arrived and the doctor had already been. I missed perhaps the most important appointment of all, for the doctors had another meeting in light of mum's severe and worsening bouts of vomiting (is it still called vomiting, when there is nothing to vomit but stomach juices?). Why on the day where I happened not to be there?

The vomiting will not be helped by the insertion of an NJ feeding tube, the doctors said, for the cause of the vomiting is due to the inability for stomach fluids to escape through the other end, so instead it all comes out the other end, through the mouth. The feeding tube will only solve the issue of mum getting nutrition the "natural" way.

The alternative is a bypass surgery, which the doctors had put aside before it is a risky and perhaps not hundred percent effective solution. Further, a bypass surgery to reroute the intestines to bypass the area blocked by the growing tumour may, if effective in resolving the issue of food flowing down, will only serve its purpose for a limited time. The tumour in that region, which I saw on the MRI and endoscope images, is certain to grow and grow without chemo or radiotherapy (which if mum opts for later, will certainly make her even weaker or even kill her...).

But now the doctors came back and revives the option, and wants mum to decide. It's a tough, tough choice, and what a "great" way to start the day; a way which set a bad mood for the day and which occupied our minds.

The NJ tube is only able to resolve mum's nutritional intake, but will not be able to address the discomfort and pain from vomiting. Further, it is aesthetically displeasing, and mum was very hesitant to do it from the very start. In fact, I already bought the tube last week, and dared not show it to her, for it is very, very long, and sickening to think about it being inserted into your body all the way to the intestines.

The bypass will solve two problems, vomiting and mum's ability to eat and absorb food naturally. But the surgery i is very difficult, and may leave mum, who is already in a poor state of health, in poorer state of health. It may perhaps even kill her. And how long will the surgery allow mum to eat and drink like before? If the tumour is growing and spreading rapidly, it may could be weeks, months Before mum has to go through the same hell of vomiting and getting so very thin as she is experiencing now. When we come to that, there will be no other cure. And what is the point then of a big surgery, and weeks of recovery time that follows when at the end of the however long period, the problem returns? The surgery only deals with the symptoms of mum's current discomforts, and does not address the problem of the tumour or spreading. The tumour cannot be addressed, for it is in a region close to a lymph node, and if remove will cause extreme levels of bleeding. And sometimes, when you tamper with a tumour, it may be like opening a Pandora's Box, and cause the cancer to spread and grow even more rapidly and ferociously.

Again the choice is a matter of life and death, and more poignantly of how to die... Die from vomiting and vomiting and getting worn down mentally by having to vomit so much everyday, or die from cancer spreading after undergoing yet another surgery that will cause such trauma to mum's body and soul and leave her perhaps so terribly weak for as long as she may live?

Have we come to this now, come to weighing in the possible salvation a quick death will bring against the of pains of prolonging life and dying a painful and slow death when the cancer eats away everything? How crude and cruel it seems that is the only way that mum can leave behind all this pain, all this suffering? How meaningless life has become for her! How painful it is to see a once proud and able human being, my own mother, descend into a level of existence that is just dreading vomiting, bone sores and suffering intense hunger!

I climbed into mum's bed and held her hand. There was nothing I could say, nothing worthy of saying. What do you say to all this? What do you say to someone faced with a choice of the lesser painful way to go, when both options are so painful and so unbearable to think of?

I just held her hand. Silently, I told her I will be by her side.

Eruption

"Stop pestering me! Stop lecturing me! I'm already so ill, stop lecturing me!"

My heart broke again, not from helplessly seeing her suffer and be in pain, but realising that I am causing her pain. It feels so hurt hearing mum's raised voice and facial expression as if she were about to burst into tears. Not only cancer and her vomiting, not only her mangled thin body and uncontrollable bouts of vomiting is torturing her. I am tormenting her too, I am perhaps making her worse rather than better... Am I a source of her suffering, a reason why she lies there with eyes wide open and is unable to sleep, despite having not slept properly for two days?

The incident, so small and trivial if I think about it, began because she complained of pains. I asked her why she didn't say anything to the doctor who came to visit earlier, why she did not ask for medication to control the pain. It's not the first time, for she is often in discomfort and in pain, and yet when the doctor comes, she doesn't say anything. Only later does she complain of pain and sores.

I can only do so much by massaging her and giving her heat packs, but the doctor can prescribe medicine to soothe the pain.

"Didn't want to ask the doctor for help because the doctor seems so busy...."
"The pain just comes and goes..."

I really cannot understand why she must put up with pain for any period of time. At night, she'd rather wobble unstably to the washroom by herself and risk falling and breaking her bones(or worse!) than wake me up to help her.

Always so considerate of other people, always thinking of others, which shows how soft-hearted and sympathetic ahe is, and yet in the process she swallows all the pain and displeasure inside... (sound familiar? Like mother, like son?)

It infuriates me, a lot, more because I've told her again and again to speak up when she needs help, to talk to the doctors when she does not fully understaffed something... And it hurts me to see her have to suffer unnecessarily, when sometimes all she has to do is ask for help!

I know, I am rude, I am sometimes very impatient and get angry and ugly when I am upset. I know I must control my tempers and be more caring, more bearing... But I just wish mum could ask for help more... Otherwise, what is the point of me being here, watching over her twenty hours a day?

My aunt (mum's youngest sister, bless her!) came to talk to me and cheer me up. She knows well the situation... Mum and I are very alike, and neither wants the other to hurt or be burdened much, but then sometimes conflicts arise as a result...

"Cheer up! We must be more happy and joyous, otherwise she'll feel like everything is so terrible and that she's dragging us all down because she's ill..."

I know... It's hard being ill, it's perhaps the worse possible thing that can happen to a healthy person. Being ill can really erode your self-confidence, your self-worth and dignity, it can rob you of independence and beauty, can cause you to be so mentally exhausted and anguished... And it is up to us, the family, the caregivers, to make her feel loved and cared for, and not to give her more stress, more cause for worry!