Night before last night

05052012.0122

Should I be sad? Should I be mourning? Should I face the facts and allow my mood to sink?

Am I lying to myself by being hopeful? Am I fooling the world by not thinking too much about the doctor's words the day mum checked out of hospital?

"It is in the final stages (末期)..." was the only thing the doctor said. He did not know what to say when brother asked for a time. I personally find it somewhat distasteful. As if one could predict when or how or where death, or anything in life, will happen! And what does it matter really? So people could be nicer and do better if someone does not have much longer left? So you could start living more and doing more with your life if you know time is limited?

The doctor was kind to sit down with us for almost half an hour. He drew a picture diagram of mum's inside, and better than before I now can visualise what they did in terms of the surgery and what is causing the jaundice.

I know much of this already, so perhaps that's the reason why I just sat there and let the words wash over me. I felt like I was not in the room, like I was just a bystander, as brother asked the questions and the doctor answered and drew his diagram...

There is a large lump on the duodenum. It is causing food to be trapped in the stomach. They connected a lining of the small intestines to the stomach wall, so that at least some food can leave somewhat naturally down the intestines and be absorbed. The lump is growing larger. It has compressed against the wall of the bile duct, suppressing the flow of bile which normally enters the duodenum. Jaundice is caused when bile, a poisonous substance if not excreted, collects in the body, and it causes the body to turn yellow and causes the liver to slowly lose its functions. Hence mum's continuing tiredness and still yellowish skin tone.

"I discussed with other doctors, and the duodenum is no longer operable." This was contrary to what I was told before, when I was given that glimmer of hope. Hope mixed with anxiety, for back then I was already told it would be a major operation, and I dreaded mum having to face another long stint at the hospital and having to walk on the long road to recovery again... Now, the lump has grown too large, and an operation to remove the duodenum and reconnect the "tubing" in that region ( which involves cutting out a piece of the pancreas, rewiring the biliary tree and readjusting the stomach and intestines even more) is simply too much work and too risky. It's not worth the risk.

"We've done the best we could so your mother can eat. She may still throw up a bit, as some food will still collect in the stomach and not go down the reroute, but at the very least she can eat and drink like before."

As for the bile duct, they installed a tube that is longer and thicker to direct the flow of bile down to the unblocked part of the intestines. For now, it seems to work well, as mum's jaundice level has come down (but still is very high...), but at least the bile is channeled as intended and leaving the body. There is still an open wound and a tube coming out of it, and mum has to have the tube in her for a month or two. The wound has to be cleansed and addressed of every day. Any sign of her skin yellowing more or any sign of fever, she must immediately check into the hospital, for it may be an infection of the wound.

"She can go home and rest and eat. It's important that she eats well and gain back her strength," the doctor reminded us.

Brother is scared, he told me. He's scared of what may happen, and scares of mum's condition worsening. I reassured him in the best way I could. Though, admittedly, I am of course also scared.

"It doesn't matter what will happen in the future, don't think too much about things. They said three years ago mum doesn't have long. Even if something happens tomorrow, or next week, you're doing your best, and you will not be alone. You've got your wife, your kid, and I'll be back too." (momentarily, I must admit, there was a rise in jealousy and sense of longing, for I have none of the important, valuable sources of comfort and support I just mentioned.)

Whatever happens, I am here. I will be here to support you, to support and comfort mum till the very end, I heard myself saying in my head. "You just spend more time with mum, touch her, talk to her, make her feel comfortable and assured. There's nothing more important. There's nothing else we can do but those things."

Brother was silent, but I know he heard me, because I've said the same thing to him several times. And I strongly believe deep down, he also wants to play a role, but he just does not know how or where to start. And I've been also telling mum to give him (and his wife) a chance, not to judge too soon, not to have any preconceptions based on events and unhappiness in the past, but to let them demonstrate what they can do, to let them have their chance at being filial children.

I believe strongly that this is all part of "Operation Eternal Happiness", an effort from all sides to get together and make beautiful memories together to keep, and to keep for life, and to keep even after death. The ways I've seen my brother and sister-in-law bond an interact with mum over the past two days have been very promising. And my nephew's cute little face and multitude of expressions and sweet little bouts of giggles is a wonderful bonus to add to lightening mum's discomforts and adding to her impression that life has been wonderful, and that life continues to be worth all the hardship and pain...

Thought

01052012.1454

I am destroying my own body...
I feel it.

Seven days

I crouched next to mum's chair and we chatted. The carer joked that it's funny, and sweet, to see a grown boy be so "clingy" and stick around his mother like I do. I think nothing of it. I am the way I am toward my mother. Around her, I behave the way I feel is appropriate and comfortable. Even if it's crouching next to her like a little kid, it doesn't feel awkward of strange. For how many more nights, how many more hours will I be able to be so intimate and close to her? How many more moments can I still reach out and touch her hand, feel the warmth of her body?

No regrets. Life is already too short and often too unpredictable to live with any measure of regret. This sadness I feel inside, which grows ever heavier with each passing day closer to my day of departure, it is not regret. It is a pain from having to leave mum's side at a time when her health condition is still fragile. This time is not like other times before, when I would come back and stay with her until the side-effects of her treatments subside. This time there are no side-effects, just a state of gradual decline of her physical health, and a gradual erosion of her spirits... How painful, how difficult it will be to leave her. And I can't imagine how it will be if I have to leave her and say goodbye if she were still at the hospital. It would be so traumatic, so painful, like never before...

Mum stroked my hair and patted my head. "You have been so good to me... I'm sorry to be moody and to shout at you at times..."

"It doesn't matter. None of it matters..." Tears were wallowing in my eyes. Not because it feels great to know I was wronged and that mum apologised, but because I know a lot of what mum has been feeling, a lot of her anger and moodiness is not because she wants to be like this. A lot of her emotions come from the fact that she's been confined to the same room for so long, and she is not free to come and go like I am. She is not free to walk around, to eat whatever she wants. She is not free from pain, from suffering, from the torments of her physical body and the anguish and frustrations she may feel in her mind...

I wish I could do more, much more than just sit by her side and hold her hand, much more than just massage her sore back and sore arms... But there is only so much I can do, and only so little time I have left to do them.

Yellow stains

Couldn't sleep much last night, as mum kept on waking up to use the washroom. At one point, close to five in the morning, she woke me up but it was already too late. I could see her pants were stained yellow. She said she couldn't hold it in.

"Why didn't you wake me up? And don't say it's because you didn't want to wake me up because I'm sleeping!" I was upset, and saddened. Would you not be to see a loved one wet herself? At this stage in her condition, and yet she still has difficulty to ask for help to take care of very basic needs. But I can imagine perhaps she feels very ashamed needing to ask her child for help so much, especially to pee. How a person must feel to gradually lose control of your bladder. Is it chronic incontinence? Or due to the fact that the doctor put mum back on IV drips again after a few day of rest? I noticed that whenever mum is on IV, she needs to go to the washroom a lot, and sometimes it comes very quickly she cannot hold it in...

Nobody should have to wet themselves and wear moist pants to sleep. I told Mum that. How very undignified, how very humiliating. Mum is worth much more than this, much, much more...

Fever

Ok, so there was a good reason why brother didn't show up yesterday, a very good reason.

Just came home and he did look sickly as he walked out of his room to greet me. "I have a fever..." It must be from walking in the rain, he said, for it was pouring heavily all day yesterday. And as he seems to always believe it's too hot and humid here, he rarely goes out without a jacket. And so he hit the jackpot...

Dizziness

21032012.2022

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

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

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

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

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

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

Medical report

I have almost forgotten about it until I opened the package. It was delivered by a courier service called "Maple Leaf", which made me jump to the wrong conclusion it was something from Canada (maybe it was a sign: time to go home...?)

It turned out to be the medical report from my recent medical checkup. Eagerly I opened it to find out the results.

While there is nothing "seriously" wrong with me, there are five, six things I need to be aware of and the report recommended me to make followup appointments with specialists. As expected, my heart beat is unusually slow, measuring at just 54beats a minute, while the normal is anything above 60. While I went to see the cardiologist the day of my physical, he wanted me to wear a heart monitoring device for 24hrs, which would have cost a staggering NT$4000 ($130 or so), so I refused to do it. I don't think there is anything seriously wrong with me, just that I have a weak heart. And I prefer to get checked up if need be back home in Canada, where my medical insurance will cover it (in Taiwan, I have no medical insurance, hence the prohibitive costs!)

My weight is a problem, as I weigh about 10kg below my ideal weight for someone my height and my age. It's a problem I've been battling for a long time, and whatever I eat, even if I eat a lot, I don't seem to weigh more than 62-63kg; historically I don't think I've ever gone over 65kg. Over the past I've definitely shed some "excess" weight, and at one point was close to just 60kg. Stress, severe stress, and being unable to really eat seeing mum so ill and vomiting so much, has to do with it...

Day two

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

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

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

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

Bijschrift toevoegen

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

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

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

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

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

Day two

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

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

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

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

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

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

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

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

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

Mum's scribble

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

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

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

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

Heartbeat

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

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

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

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

My personal diagnosis for the irregularities of my heart beat?

Brokenaurs heartus.

All clear

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

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


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

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

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

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

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

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

Food glorious food...

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

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

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

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

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

Physical exam

Heading out to the hospital, this time for myself. Though the feelings of bloatedness and at times burning pain in my bowels have subsided (I still feel it at times...) I feel it's time for me to get a checkup. I found a package at Wangfang Hospital, where mum received her CyberKnife treatment. I've had a good impression of the hospital since I first went there, for the staff are extremely friendly, the environment is much cleaner and 'happier' looking, and the facilities are very new (unlike at the hospital mum goes to normally close to our house, at least as far as the overall environment is concerned.). This package involves a thorough checkup of the digestive system, including colonoscopy and endoscopy, as well as scans of the entire body and blood tests. With the family history of cancer in the bowel area, I feel more the need to be careful and get checked regularly. In a way, I'm becoming paranoid, especially seeing my mum's health deteriorate like this... Without wanting to sound selfish or uncaring, I really do not wish to be like that... For it is so much suffering, so much pain, and robs you of your life...

It will be my second thorough body check, for the last was two years ago. And the actual check up day is in five days. I do need to go pick up so papers and make a downpayment, and they will need to brief me on what I should be ware of eating prior to the physical.

On the way, I'm stopping by the national bike association for some info on my upcoming big adventure. I saw online that you can rent a gps device, and if you manage to complete the journey around the island you can get a certificate. More importantly, the device can help people at home keep up to date with my progress and see where I am. Also, if i wish to solicit sponsorship for my cause, there is no better way to prove that I've completed the challenge I set out to accomplish.

But renting the device is not cheap, at some NT$800 (including a NT$3000 deposit). And in a way, I'm a little apprehensive wether I will be able to finish the journey in one go, because I'm a bit afraid of that if there is something with mum, or even with me, I may have to cut short my journey...

But I will never know until I try.

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...

Life planning

A provocative campaign to raise awareness
for colorectal cancer.

The question been on my mind for some time. What are  alternatives are there if one were to opt to stop all treatment? I know what the likely consequences of that will be, but what does that mean in practical terms? What does that mean at the "end of the road"?

I saw the words "HOPE" on an billboard at a metro station some weeks back. It was an ad for a charitable foundation specialised in providing support and aid for cancer patients and their families. So I looked up the address, and used the time alone to pay the charity a visit.

It was a little office in a residential area, located in an obscure side street. And yet, on the door, in big colourful letters "Little  Station of Hope". The organisation has existed since 1982, and was formed by a number of doctors and nurses who wanted to create a body to provide cancer patients and their families exactly what the name says: hope. Hope in terms of offering medical advice, organising gatherings and courses, offering counseling and financial support for those in need. There are even books and wigs you can borrow if you need to.

When I entered, it was very busy, for a class just ended. I stood by the door for a little while before a lady came up to me and asked what I was interested in. She was extremely friendly and listened to me describe mum's condition and treatments over the last six years. Surgery to remove a Stage III tumour on the colon in 22006, relapse in 2008 and annual chemotherapy ever since. I had pictures of mum's medical report stored on my phone, so I listed the drugs mum has used or taken. 

"Four years already? She's done chemotherapy for four years?" There was disbelief in her voice. And from her expression I could see she finally understood why mum (and I, or perhaps I most of all?) are considering to just "let things be". "Oh, she really has used all the possible drugs there are..."

And I reminded her that mum also did radiotherapy last year, and underwent a major surgery a month and a half ago. And just today, she completed four sessions of cyberknife treatment. What else is there that she has not tried? And the cancer keeps returning, keeps popping up in other areas... So brave, so very brave is my dear mother... I could burst into tears at the mere thought of how much she underwent in the past couple of years, and how long I have accompanied her on this journey. I held back...

The nurse-volunteer explained to me the possibilities, and that at this stage it is too early to say in detail what kind of care mum would need. Frankly, we are not there yet, despite mum's worsening sores and continually weak health. But of course it is always good to think ahead, to plan ahead. To plan for life (and, yes, plan for dying and death...).

"Palliative care" is an option if you don't want to continue any form of treatment. In line with what I have been thinking, it doesn't mean giving up. It just means that the patient stops receiving treatment for cancer and just "let things be". The focus will then to alleviate pain and ensure the patient is as comfortable  as possible, till the very end You still have to go to the hospital every two months or so to followup on developments. If there are symptoms, or any worsening of the illness, the doctor can prescribe ways to reduce or alleviate the pain.

Four celebrities, joined by members of the public,
are doing a 21-day run around the island to raise awareness for ovarian cancer.

"It may be possible the cancer will spread to her stomach, damage her digestive system, infiltrate the kidneys..." the care worker explained. By that point, feeding regimes will have to be established, and also we will have to think about ways to get rid of any bodily wastes. By that point, at the very end, mum will definitely need constant care and need someone to be by her side all the time to attend to her needs. Much like the first weeks immediately after her surgery. All this can be done at the hospital, or at home, where a healthcare worker can visit regularly to ensure a comfortable and dignified end. Should things come to that, details will have to be talked through with the doctor and healthcare workers.

The way she described possible outcomes of not proceeding with treatment sounded daunting, bleak and frankly painful. But is not the alternative, of being in the hospital day in and day out, of being so physically and mentally eroded by chemicals and medicine, really a better option? I will have to return another day and bring mum to talk about all of this. For it is her life, and she must understand and get to fully know what the possibilities are.

"For now, just do as you have always done," the nurse-volunteer said. Be like normal people, do things you enjoy, travel. There is no reason not to. There really is no reason not to.

"Have you thought about what your plans are?" she asked.

I was taken aback by her question, for I went to the charity with mum's condition in mind, and had not really thought me or my plans would be brought up. I told her my life over the past few years, all the traveling, all those restless, and at times sleepless, nights. I told her my fears of committing to anything, whether it's a career or in my personal life. She listened quietly and nodded. She understood.

"Often what a parent wants is not for you to give up everything because she is ill..." she said, "Of course cancer can affect family members and future plans, but have you thought about perhaps your mum would be happier and can "go" easier if you were more settled?"

I did. All of this I did think about. I know, and I can see that my presence over the long run can cause her much grief, much pressure-- to the extent that she has even told me before she would want to "go" (ie die) quicker so I can go off and start living, instead of hanging around her and taking care of her. But there is always this fear.... this incessant fear that if I go off and pursue my dreams and my happiness, I may miss that day she...

"Sounds like there are no regrets between you and your mother," she said calmly, "There does not necessarily need to be a conflict between being there for your mother and doing what you want in life." How many people like my mum and me has she come across throughout her career and her time at the charity? The feelings of care, of love and fears of losing a dear, dear one is universal. "If there are no regrets, then that does not mean you are abandoning her. You can still give her moral support, talk to her often, encourage her. I am sure you will be there at that crucial end..."

I sure hope I will be, I can be... I so much do hope so... But that is not for me to decide, for I cannot influence fate, I cannot influence the way or speed at which mum's cancer chooses to grow or spread... I cannot influence, let alone control, the unknown future.

All I can do is find mum a network of support she can turn to other than me, for I am not a medical expert, nor am I someone who can fully relate to what it feels like, what it really feels like, to be a cancer patient. All I can do is show her there are other options than face  treatment after treatment.

And this is what I am trying to do. Trying to do.

Coping...

How has my life benefitted the world in any way today? What did I do that is worthy of mentioning? Cleaning up the apartment? Making mum feel comfortable and cared for? Slicing fruits and reminding mum to take her medical supplements? What did I really do to make me feel at the end of the day, before sleeping: "I have done an honest day's work and can feel so proud of myself?"

I cannot describe how very useless I feel nowadays... How useless and lonely I feel every day. But
I can't complain, especially not to mum. She is sad and already very moody at times because of her long sleepless nights and almost constant pain and bodily discomfort... How could i possibly complain to her about my frustrations and not make her again feel like she is burdening my life?

I wake up, think of what to eat for breakfast, then lunch time swings around, and soon after it's dinner and bed time. Day and night have lost their meaning, work day and weekend have blurred into all the same... I am not lamenting my lot, for mum simply cannot be left alone for long...

But I too want to work, wake up and be part of something, I too want to make a living, relax after a long week of work... I too want to have a close somebody I could turn to and talk about things, or even cry in front of at times. Here I am with mum physically and almost constantly and yet am so very lonely. I can't blame her, for since she lost her voice she doesn't want to talk much any more. And she is often so weak she just sits there or lies there, looking into space. When I talk to her or ask her something, she doesn't respond much. It has come to this...

I don't want to be someone who complains all the time (and this blog for the past few months, weeks has become that: a list of complaints and rants...), for my Worries and sorrows are nothing compared to my mum's constant struggle for life and to stay positive...
But really, I have never known a time in my life when I am so physically and emotionally drained and empty. It's like I have lost the ability to hope, to dream and to tell myself things will be ok soon. It's as if I have lost the ability to know what the purpose of my life and of breathing is. It's like nothing has any meaning, nothing is of any value any more. And to feel this world almost every waking moment is a terrible, terrible torture for my mind and spirit...

I cannot describe how being here, being in this very apartment and having to share the little space, having to sleep on the floor all the time, is testing my patience... I need challenges, I need someone or something who can stimulate me intellectually. And right here, I don't feel anything.

Another early night, another night of listening to mum cough and groan, and twist and turn in bed... What will come of tomorrow...?

Unwell

All these posts about people and happenings in my life, a change of perspective and turning the attention to me now... Me, whom I've neglected time and again, and rarely really take care.

The long breakup and loss of my best friend and mum's deteriorating health have together really caused me much pain and anxiety over the past year. And for the past four years, there have been other misfortunes and worries along the way... the loss of my dear dad, the loss of my "mother" in the Netherlands, the loss of a close friend, and now confronting my uncle's imminent passing (all because of cancer...), combined with my own unstable and undecided future.  All these reasons, external and internal influences, combine to make me feel like my world is so disturbed and insecure...

Never before, I don't think, have I felt such stress, such emotional pain that often manifests into physical discomfort... at the back of my head, in my bowels, in my back, around my hips. Sometimes, the pain is sudden and sharp, and it goes away after a while. Right now, after an evening of watching mum in great, great discomfort and throwing up two, three times made my stomach churn...

I know I take too much to heart. I tell others to laugh at things, even the most difficult things in life, and I should heed my own advice at times. But I feel as if there are so many, too many, things I should do something about. And yet I am powerless to do or say anything to affect change or influence things. It creates much stress and tensions within, makes me sleep so badly at night, makes me moody and mentally drained... And I feel, perhaps due to some morbid sense of paranoia, as if something is 'growing' inside of me, as if all the traumatic experiences and feelings, the accumulated fatigue and emotional depression and hurt, might feed the growth of malignant cells...

Yes, sometimes when I hurt in my bowels, or at the back of my head, or on my skull, I see images of my own body. Images like those of the scans I have of mum, which I have stored on my computer... images of 'grey areas' growing on the bone... haunting images of 'dark areas' compressing on the nerves and muscles... I see myself, or imagine things, growing... Stress, long term depression, and exposure to traumatic experiences of seeing a loved one sick and become more sick are very toxic cocktails for the anyone's body and mind.

How do I de-stress? How do I worry and fear less? I try to meditate... I try to calm down and breathe... Who can take my anxieties and stop me trembling when I do, help me feel reassured and safe? Who can I turn to, but here, to the faceless, unknown reader who, from a safe distance, reads this depressing account of a lost boy's life woes and worries?

People tell me again and again to take care of myself. They remind me if I fall ill, who will take care of my mother?

I must not fall ill, I must not succumb to any illness or disease of any kind. Mental or physical, and certainly not the illness I fear the most: cancer!

I must be strong, stay strong, and weather the emotional and physical turbulences that come my way!

For if I fall ill, who will take care of me?

No more, no more...

Tears were rolling in her eyes, she said as she recalled that day when she opened my thesis and read my dedication. It is things like that she lives for, she said... Touching moments in life, not hospital treatments and doctor's appointments.

I bit the inside of my lower lip, so hard I could taste my own blood. Biting the insides of my lips is something I have learned can control the tears. Strange, because it hurts so much, but the physical pain perhaps overpowers the mental pain...

I hesitated to say it, but it has been on my mind a long time. I hesitate because I wonder... is it for her own good that I am saying this, or for my own selfish interests? Is it because I don't want to be (t)here to take care of mum, as I have done on and off for the past three years or so, or is it really because I have her best interests at heart?


"Stop the treatments", I suggested. Stop them completely.

No more chemotherapies...
No more radiotherapies...
No more cancer indices...
No more scans and tests and injections...
No more hospital visits, no more sitting in the crowded corridors and waiting, and waiting...

No more, no more...

I know I have alluded to my message before, so it was not a shocker. The reality is this: the cancer is spreading, unstoppably. How fast, how slow, I am not sure. What is certain is if you treat one place, another problem area pops up. For now, the the greatest source of her pain, the tumour compressing on the spine, has been removed. And in a few days she is due for treatment to (hopefully) eradicate any remaining traces of the cancer on the spine.

And then what? Her main physician referred to the fact that she may need to undergo more chemotherapy after the upcoming radiotherapy to contain her illness. Yes, contain, because there is no cure once cancer metastasises, which it already has. And sometime ago, he told mum that there are no drugs that are effective any more, because she's used them all. Once you have used one, the cancer cells become resistant. The chemo just kills the healthy cells and has very little effect on the ones you want to kill. Xeloda, Folfox, Folfiri, Erbitux... what else is there out there? And if the treatments are not working, why keep on doing it?  How much more money must we burn through to continue with treatment after treatment? It's not about the money... it's about the dignity and quality of life.

How painful is it to watch a dear one suffer? How painful is it to watch your loved one bend over the toilet bowl and choke on her own vomit? How painful is it to have to quickly sweep away the falling strands of hair so that the one you care about more than life itself does not have to be reminded of her hair loss...? Multiply my feelings tenfold, hundredfold, and that pain would never ever equate the pain, fears and anxieties mum feels undergoing treatment after treatment, time after time. Is it any wonder why mum would like to "end it all"? Is it any wonder mum is becoming dazed and numb and looks so very, very tired...?

So stop it all.

Stop it all and let fate take its course?

Stop it all, and let the demonic cells grow and multiply, feed and fester inside her body until one day her body is but a rotten, cancerous corpse...?

After signing the agreement to proceed with cyberknife, with what I suggested to mum, why do I again feel like mum's life is placed in my hands...? Do I hold the warrant to her life (and death)? Is it because I really care, or I am too tired of caring any more and want this to quickly end?

How heavy, how very, very heavy that burden, that responsibility is... how heavy it is to tell your own mother to give up on treatment while she is ahead, knowing fully well what the outcome of that decision might be... And where was brother while we are discussing such a life changing matter, discussing the future life of our dear mother? Playing mahjong with his new family elsewhere in the country. Is she not also my brother's mother...?

Mum understood what I was saying, and perhaps why I was saying it. It's soon her sixtieth birthday... does she want to spend the last few years, months, or however long she has still, of her life going in and out of the hospital? She's lived that life for the last  four years, and I have lived it, from afar and from close by, with her. Sixty years of life she's almost had, and would it not be a shame if it were all overshadowed by the pain and misery of the confinement of the hospital walls in that final leg of her journey in this universe? Dad experienced it, my uncle, who is perhaps nearing the end of his life, is experiencing it... so many people I have seen in the past few years just seem to rot away in hospitals. And how horrible that is... how undignified, and what a crude and colourless way to leave this world that is!

"Don't you want to see more of the world? See the flowers blossom in Spring in Europe again?" I was reminded of a story she once shared with me about this elderly couple, both of who got cancer. The husband (or was it the wife?) decided to go travel, see and explore the world and seize his days, while the wife (or husband) decided to stay home. The latter died soon after, while the other traveled the world and experienced life in a  totally new light... Eventually, with absolute certainty, we will all die. But we may be able to influence the way we die, or at the very least the final days and moments before we die. Is this naive make-belief or bravely and confidently facing death?

I know mum was moved by my words, and I know deep down, she agrees with me, for she has on so many occasions expressed to me her disdain for hospitals and building fatigue of having to go through so many treatments, take so many different pills-- all of which are stacked up on her shelf like little mounds. But can she really just "go"? Can she really "live and let live", as they say? In this case, it really is about living, and letting life live itself for however much longer, in whatever way it carries you...

Of course, ultimately it is mum's decision. But one that will have a bearing on my life and my future. What if she follows my advice and urgings and suffers a horrible, painful end? Will I be able to live the rest of my life knowing I influenced the person dearest to my heart, to my life, to forgo the chance at prolonging her life by forgoing medical treatment...? Will I be haunted by nightmares, more than ever before, and tormented by a guilty conscience if influenced by what I said mum stops everything?

Ask me in a month's time, and perhaps this issue may be moot.

Ask me in a year's time, and perhaps these questions will have been answered.