phobia

i was reminded a few times yesterday that today i need to fast for 4 hours before i do my CT simulation at 10am. during the last reminder, the nurse even stick a piece of paper on my appointment card which i found it so silly and redundant. i felt like telling the nurse, "i have cancer, not alzheimer."

this morning i woke up at 7am. happily brought my mug to the refrigerator, poured a mug of cold powerberries juice. i saw the bread my maid prepared quietly sitting on the kitchen bench. i grabbed it and i toke a bite.

by the time i "recovered" from my "alzheimer", it was too late. half the bread and half mug of powerberries juice already in my stomach. frankly speaking i really dunno why i'd become so muddle-headed. i felt so sorry for myself. i called ncc at 9am, and told the nurse about my problem. the nurse said the fasting is due to some patients having side effects on the medication taken during the simulation. since i did not hv any side effects previously, it may not apply to me.

phew! so i need not reschedule my appointment.

CT simulation is more relaxing. they even had a music player in the laboratory. it made me wonder if the music is for the staff or for the patient.

they (2 girls) spent a few minutes trying to get me into "position", adjusting my shoulder, neck, head to align with the green laser beams. then they took out... the MASK!

shit... i guess now i really hv some phobia with this piece of shit. the moment i saw it made me palpitate. one of the girl seems to observe my uneasiness, she said, "just close ur eyes, the simulation last only 10 minutes."

ya, 10 minutes isn't very long. if i can't even make it for the 10 minutes, how to go thru the 33 sessions of radiotherapy which requires me to put on the mask for about 25 minutes? if it's a phobia, i definitely need to overcome it.

i dunno if distraction is the best solution for this. but it seems to work if i'm able to distract my thinking from the surrounding. i tried to relax my body, think of how am i going to spend the long weekend. think of friends whom i'd not seen for a long time (yes, including u). surprisingly i did not encounter any difficulty throughout the entire 10 minutes. i remained very still even after the simulation, until i was instructed to get up. maybe it's the blindfolding that caused the problem? maybe it's the pounding noise from the MRI machine? maybe i'm magnetic?

anxiety disorder

today i had two appointments in NCC.

the first one is for remaking of the mask. the mask is made of special material and the purpose is to ensure that during radiotherapy, my head would be secured in position to the radiation.

as i said, remaking. initially before i decided to take part in the trial treatment plan, they made me a mask. since that was before my chemotherapy, i was still full of hair. this time, my head is round like an egg shell. logically, the mask made from the previous time should be slightly too big, but to everybody surprise, it fits on tightly to my head. owe to my effort in eating, i'd gained 4kg.

the girls were very happy (the 3 "facial" specialists). as their first customer of the day, i'm definitely an task to accomplish.

no remaking is needed, only some minor modifications.

the next appointment, exactly same location: radiation oncology, is MRI. i'd done this before too, and i hate it. i still remember the previous time i did the MRI, i almost go hysteria.

first i was told to lie on a platform, given a call bell. i was told at anytime of discomfort, i can just press the call bell. then the platform went in between a big "donut". then the machine started to produce a lot of loud and funny noise. in between the process, i was told not to make any slight movement, not even swallowing of saliva for certain period of time, some time 3 minutes, some time 5 minutes. the whole thing lasted about 30 minutes, then the platform moved out of the donut, the radiologist fixed the shell on my head, secured the shell to the platform, covered my eyes, sticked something to my nose. platform went in again. 2 x 5 minutes interval, same thing, the machine kept producing loud and funny noise. it was during the second 5 minute interval i suddenly felt panic. i wanted to move but i couldn't. i wanted to press the call bell, but that would mean i had to go thru another 10 minutes session again.

i didn't allow myself to go too much out of control, i tried to relax my muscles,

took deep breathe and count the number of breathe i took. i told myself to made a hundred count. by the end of the 100 count everything should be over. i counted 30+ and it was over.

the first 30 minutes was fine. in fact i think i did better than the previous time. despite the irritating noise, i was resting and relaxing in the "donut". i tried to recall my childhood. it's been so many years i tried to recall my childhood memories.

the platform rolled out of the "donut". the 2 radiologists and 1 of the facial girl set up the mask on the platform. first, i felt the mask was pressing very tight on my head. so tight that i could hardly open my eyes. my breathing was somehow affected too. although i could still breathe, but i seems to need the extra strength for the inhalation. then i was blindfolded. i never have problem with darkness. but this time round, the darkness has another implication, it's going to start. then they sticked something to my nose. then...

i pressed the call bell.

i think it is probably something very serious when somebody press the call bell. this could imply that the MRI need to be cancelled if the patient is in bad shape. i could feel that the radiologists and the facial girl were as anxious as me although i'm very sure i'm not the first one in history to press the bell. they quickly remove whatever they fixed on my head, and helped me sit up on the platform.

then we ran into a short period of embarrassment. i was sitting on the platform trying to catch my breathe, the 3 of them just look at me dunno what to say or what to do. i felt like giving up. from the moment they fix the shell on my head, to the moment they remove the shell from me is not even a minute and it's already so unbearable, how can i last 10 minutes?

i never know that i had claustrophobia. when i was in vietnam, i went thru 2 segments of the cuchi tunnels. complete darkness, enclosure had proven no effect on me. why am i behaving this way? is it physical or psychological?

i think they were waiting for my decision. no encouragement, no discouragement, no comment. the room was in complete silence. at that time i was very sure that the MRI would not be able to continue. since i pressed the call bell, mentally i'd given up. on top of the physical conditions, now i hv a phobia to overcome as well.

i can't tolerate myself to be the kind of person who will give up becos i think i can't do it. if i can't do it, i'll also want to make sure everybody seen that i'd tried. i maybe weak, but i'm dare to challenge.

i took a few deep breathe, and announced, "i'm ready."

suddenly the room became lively again. especially the facial girl, she was very enthusiastic. "maybe we loosen a bit", "maybe we tighten the side instead". this time she made sure she did everything slowly, made sure i was fine with the current step before she proceed to the next.

at first i thought i'll be giving up. but during the locking, i realised that this time i could actually flex my shoulder muscle to gain a very minimal movement on the head (maybe 1mm? maybe half mm? 苦中一点甜?). at that moment, my claustrophobia just suddenly disappeared.

10 minutes, i flexed my shoulder muscle thrice. when the platform finally rolled out of the donut, i was still cool and calm.

diet

last week, i visited the website of Singapore Cancer Society. was trying to look out for some goodies or priviledges for myself. u know? maybe i get to eat a free lunch or get a goodie bag for joining them as an exclusive member. save ur effort, unless u think u hv something for them to steal.

this is a piece of ad i saw on the website:

so based on the above information, my meals for the month of june and july would be $144 a month. still cheaper than a mcdonald meal daily. so it "payoff" to be a cancer patient if u r a mc lover. hahaha...

but u notice something on the ad? nasopharynx cancer. why not lung cancer? why not breast cancer? why not colorectal cancer? becos nasophraynx cancer patients good to bully? should kick their ass harder?

many of u did not know what i'd gone thru in NDC (national dental centre). becos initially i was schedule to do radio immediately, i hv only 4 working days to do dental clearance. reason is becos once radio started, my gum and teeth will get weaker, then with all the sores and ulcers, i would rather die if i caught into a dental problem during the treatment.

so the dentist made a very brave decision after discussing with another 2 senior dentists, they decided to extract all the 4 wisdom tooth in a day. he was feeling very sorry for me, but the order from NCC clearly stated that dental need to be cleared in 4 working days (from here u can oso see that among MOs, dentist is the smallest fry).

so the next day, i went back to NDC for a supposingly 1 hour day surgery. the dentist who made the brave decision wasn't the surgeon. he himself said that he's not qualified enough to perform such a "major surgery". my surgeon was a very matured and cool indian dentist. still, i guess he'll remember me forever. i was patially anesthesic and blindfolded. but i can feel that many heavy duty equipment were applied to me (surprisingly my teeth was super-duper strong). the entire dentist couch were shaking, bumping, i could hear the dentist panting. the battle lasted 2.5 hours.

a month later when i went back for dental checkup, i ran into this dentist at the entrance of NDC. he greeted me. i apologised to him cos i was blindfolded throughout, so i had no impression of him.

after the surgery, no painkillers for me, no medication except antibiotics cos i was supposed to go for my radiotherapy in few days time. i had problem talking for the next 2 days, problem eating for the next 5 days. my mouth was swollen and bleeding for 1 week.

so it served as a prelude to my radio/chemo treatment: liquid diet. i live on porridge, con-gee, cereal and oats for that 6 days. sad to say, i never enjoy these food. in fact i hate cereal and oats, dislike porridge and con-gee. i dun need to tell u how lousy i felt for that 6 days. and i dun need to explain why i'm currently eating as if tomorrow never comes. 朋友，吃饱了好上路.

we were talking about 6 days. now what's lying ahead of me is 6 weeks. it's a 550% duration and infinite multiples of torture since i may not even eat the above food, and i may throw out after eating the above food.

robert writes, "Sometimes after my fourth session, the effects of the chemo start accumulating and begin battering me all at the same time... First, the mouth sores. No matter how much ice I chew, the sores will not go away. And forget about keeping anything down. I can't get anything in. For three weeks straight I live on orange lozenges, Jell-O, water, and liquid Lidocaine to numb my mouth. Prisoners at Guantanamo have a better meal plan. Once the sores start to clear up and I return to solid food, I immediately throw everything up... All of this adds up to extreme weakness. I no longer walk..."

robert was suffering from lymphoma, not nasopharyngeal. he received only chemo, no radio. we hv one thing in common, we r both ordinary men.

苦中一点甜

for the past one wk, i was pondering over this chinese phrase i came across in the hk drama "beyond the realm of conscience". talking abt a young prince was being bullied by the dowager since young. whenever he was bullied, there was a palace maid giving him sweetened lotus seed and reminded him "苦中一点甜".

this used to be a very encouraging phrase to me. it means a little bit of sweetness/pleasure in bitterness/misery. the 中and the 一点, shows that the little bit is really a tiny little bit, maybe a 1% out of 100. yes, this is important to me. in fact i always thought myself living under such conditions now, 苦中一点甜. i'd been trying very hard to incorporate more 甜 into my 苦. but i realised that overtime i'm losing more 甜, and the 苦 is still growing to no limit.

will it come to a stage i lost all the 甜 or the capability to enjoy even a little bit of the 甜? this sounds real scary. frankly speaking, more scary than death becos it means HOPELESS.

when buddha was practicing asceticism, he lived on a grain of rice a day. i used to think that the idea is stupid. if he could live on a grain of rice a day, he may as well dun eat. how much can the grain of rice provides him? 0.01 kcal? enough energy to chew that little grain of rice?

finally i understand what that little grain of rice meant. it means HOPE. it means that when buddha was hungry, starving, craving for something to fill the stomach, he knew that everyday at morning 8am (assume), he could put that tiny grain of rice into his mouth. he could take 1 hour to suck on the rice, another hour to chew the grain of rice into powder, then 8 hours for the grain of rice to digest and dissolve in his body, another 14 hours to recap the feeling of having a meal. psychologically, he was full and filled, he had eaten.

in robert's story, apart from his medical treatment, he tried out a lot of things. first thing he tried was reiki. after trying, a young doctor asked him, "You don't really believe in that stuff, do you?" robert replied, "You can't go twenty-four hours a day each and every day, obsessing about your cancer. Nobody can. You need a break. It cannot be in your face nonstop. I can't continually remind myself that if this doesn't go away, I'm gonna die and I'm never gonna see my kids again. So if nothing else, Reiki distracts me. And that is worth everything."

he tried many other things including acupuncture, meditation, yoga, transcendental medication, visualization, crystal therapy etc. i guess i need to do something similar. i always use running as a form of meditation (sounds incredible? if u run long distance, u know what i mean), but obviously this is not going to work out very soon. my body is withering, i can feel it.

i dun hv much time left. at most a month, highly possible i will be bedridden, 24hrs obsessing with the fact that I'm living in hell.

Chemotherapy VI

today is my last session of GCP chemotherapy. it marks an end to my phase I treatment. after today, i get to rest for 2 wks. during the break, i'll need to redo the mask, do the mri, ct scan. then i'm going to hell, radio everyday and cisp chemo every week.

i'm not anxious abt today's treatment. my coordinator made it clear. whether i'm fit today to go for chemo, there's no more changes to my schedule. so it becomes like, if i get it today, it's a bonus treatment. if not, forget it.

my blood test was pretty bad, those in brackets r acceptable range.

white blood 2.7 (4.0-10.0), last wk 4.3
hemoglobin 12.6 (14.0-18.0), last wk 13.0
platelet 223 (140-440), last wk 500
red blood 3.85 (4.5-6.3), last wk 3.99
lymph 46.7 (15-41), last wk 23.3 (this sounds scary to me)

when i sent the report to ATU, the doctor there dun dare to decide whether i should go for the chemo. so they contacted Dr. DL. Dr. DL chose to wait for my liver and kidney functioning test before deciding whether should i go for it.

the wait wasn't long. i was sitting in the couch 1 hour later. the moment the nurse gave me the anti-nausea jab, i felt like throwing out. interesting. same thing, the next moment i felt like sleeping. it's just like a psycho patient going for hypnotherapy. "by the count of 3, 1... 2... 3... tick!" that's it.

this time round, the IV point was near to the elbow join. it's so much better. at least when the carboplatin was infused, i dun feel the pain.

the hypnotherapy is slowly losing effect on me. half an hour later i woke up. i spent most of the time reading robert's story. coincidently, it was talking about his chemo and all the side effects he was dealing with.

"I wake up in the middle of the night with a searing pain in my stomach and an overwhelming and immediate need to take a shit. I lurch into the bathroom, plop down on the toilet, and -- The next thing I hear is a siren's warr-warr..." piles + constipation = pain + KO. both piles and constipation r side effect of chemo. "It's like Al Qaeda living in my asshole." i dun hv such a big playground for Al Qaeda to roam. but mas selamat is still on the run. tentatively, it did not pose much problem as i'm eating plenty of vitamin Cs and fiber.

lately i'm feeling quite depress. time is slowly draining all my motivations away. i started to feel myself like a zombie, misery slowly accumulating. i thought of putting a stop to it, but how? i really dunno how. i tried to do some soul searching, i realised that my mentality is wrong. in order to feel motivated, u must imagine winning. every action is a step closer to the goal. but my objective now is just to get it over. dead or alive i dun quite bother. so it's no longer a goal, i'm just burning my life meaninglessly.

Hair Loss

seriously i nvr expect that this can be significant enough for me to create a thread. there r thousand and one ways to make a man attractive, look is definitely not a lasting one.

as i said, all the while i dun bother how pple look at me. but why am i so particular this time?

the reason is simple. becos i'm seriously sick. i know this is something i can't deny, but i can avoid. i dun wan my acquaintance with strangers to fill with cancer discussions. i need to lead a normal life. i dun wan to scare children away (actually now i'm scaring grown-ups away too). when they were terrified, i was reminded that i'm carrying a big 'C' with me.

i gone thru all the trouble, cap, scarf, G.I. haircut, then finally shaved all bald, and still shaving everyday. then i realise, shit, it didn't make much difference actually.

now, test question, how do u tell a bald man from a cancer patient? dunno? nah, think hard, the answer is not difficult.

the eyebrows.

i'm losing all my hair from all over my body. eyelashes, mustache, chin hair, armpit hair, calf hair, thigh hair and even...

yes u r right, pubic hair.

Robert said, "...if you have no hair on your dick, you look sick. That's the capper. That's the signal that you're in serious trouble. Shaving a crotch can be sexy for a woman, I've seen photos in magazines. But a guy without pubic hair? Looks like a plucked chicken..."

this may be how u can tell the psychological difference between an eastern man and a western man. pubic hair? who cares? having no hair or a million hair is not going to affect how i'm going to wear my underwear, or how i'm going to greet the pple i'm meeting today.

i'm more concern about... my eyebrows. first, my bald head drew attention, then the next thing pple discovered would be my pathetic half dangling eyebrows. then they will still realise that i'm having serious problem. they may not ask, but their facial expressions look funny.

"The next morning, I wake up and my eyebrows are on my pillow. I walk into the bathroom and again stare in the mirror. I am hairless. All flesh, no fur. I look like an alien. Head, face, eyebrows as white and smooth as a baby's butt. It's odd staring at myself this way. I feel as if I'm at war, engaged in battle, and this new appearance is my uniform.. It's official. I have the cancer look."

Chemotherapy Session V

i wasn't very happy to know that i'm able to go for my chemotherapy today. when i asked my treatment coordinator abt my liver enzyme, she didn't give me a fantastic smile, just a very cold "it's getting better". maybe that's the reason why having a MBBS, she is still not able to practice in Singapore. she'll make her patient very worry.

so i dunno what's going on inside (but i saw the blood test report, my blood count is acceptable). maybe my liver has started to rot, except that they'd decided to save my life and fuck care my liver.

whether i can or cannot make it next week for my chemo, that would be my last session before my radio is on. my radio has been fixed to start on 9th june, every weekday 1030 , the concurrent chemo (more powerful chemicals) would be on 10th june, every thursday. shell making and MRI on 25th may, CT-Scan on 26th may. take care my friends, i'm going for a 7 weeks tour to hell. hahaha...

this round i could really see how space limited is NCCS. i was brought into a 5-foot way, where at the centre of the path were 3 couches for patient to do their chemo. what an experience, doing chemo in a corridor.

although i was told that the dosage has been reduced (due to my liver), i was feeling far too tired compared to the past few sessions. so much so that i had problem getting up from the couch after i finished the treatment. the feeling is like i'd not been sleeping for 3 days, then finally doze off for 5 minutes but was forced to wake up.

the nurse saw me having problem getting off, she said, "nvm, u can rest a while before u go."

u know the problem with cancer patient is that, they dun take the words as what they mean. i know the nurse was being very kind. if she didn't make such an offer, i would hv request to rest a while before i go. her offer made me think of the crowd waiting outside to come in. while i'm resting inside, somebody is waiting outside, to be cured. so the nurse offer became a comment, "u can only rest a while, then u must go."

i struggled to get up and rejected the kind offer. the nurse got a little bit worried, but i assured her that i was just feeling tired, i'll be fine after taking a walk.

surprisingly, this time round the runny nose came even before i reached home. first time in my life sneezing make me feel exhausted.

why?

this is a question many pple would ask. why you? why me?

"... I didn't do anything to screw myself up or cause my cancer. And I don't think getting cancer is a punishment or bad karma paying me back for all the bad things I'd done in my life..."

i dun like to look back. trying to analyse the cause is an act of looking back, which does not help me getting forward. but this book is interesting. when i read this part, i recalled something happened in the past.

my wife was in the OT removing the cyst. the doctor told me if the cyst is malignant, my wife may need to go thru the cancer treatment. waiting outside the OT, there's nothing i can do. i prayed that if my wife need to go thru such physical and mental torture, let it fall on me instead.

maybe somebody just need to go thru these shit. god need to select some one to fill up the quota. while shortlisting my social circle (could be ur social circle), he found that i'm the best candidate becos i'm the strongest. if i wasn't chosen, that some one could be my wife, my parents, my sister, my friends (or u) which at the end of the day, i may be losing some one i love.

thanks for choosing me. i'm happy that i was chosen.

"Getting cancer is a dose of bad luck. It's walking down the street whistling a happy tune, taking in the fresh air, looking at the clear blue sky, and then stepping in a huge steaming pile of dog shit..."

good or bad, it's how u look at it. :)

pig liver or my liver?

i once again shocked the world by being rejected for the chemo. this time round, my treatment coordinator gave me a very serious look. i failed my liver function test. my Alanine Transaminase is 3x the acceptable and my Aspartate Transaminase is 1.6x. i asked her is it due to me eating too much pig liver (retribution, now it comes to my liver. hahaha...)? she refused to comment anything.

treatment plan pushed forward by one more week. next wk if i got rejected again, they'll need to skip the last 2 sessions of chemo, jumped straight to the radio plus chemo. even if i cleared the blood test next week, they'll need to reduce the dosage to prevent complications as there's a possibility that my liver is injured.

after i surfed the web for elevated liver enzyme, i knew why she behaved that way. there is almost no definite answer for this again. the cause could be very serious, and there is almost nothing can be done on my side to lower it down. not like low blood count, eat more TEE KUA.

so... i'm in shit again. one more week added to my treatment, more things to worry (my liver this time, and whether should i stop eating pig liver to stop the retribution. hahaha...)

i started to do a "soul search" after leaving ncc and i came out with 2 conclusions. 1) could it be the century egg porridge that i eaten this morning? century eggs r known to be quite "poisonous", could it possibly stimulated my liver enzyme? 2) could it be the raw salmon that i'd eaten on saturday night and sunday night? doctor told me to avoid uncook food. these were the only 2 days i wasn't obedient.

caregiver

read on... robert schimmel mentioned quite a bit on caregiver. sometimes i wonder, is it possible to hv a cancer patient like me (who need to go thru chemo, radio and chemo) going without a caregiver? i guess this is a tough question to answer.

robert was a divorcée and he was in a good relationship with another girl. it took him less than 24hr to break off with his girlfriend and go back to his ex-wife becos 1) he wanted to spend his possibly remaining life with his children, 2) he think his wife made a better caregiver and 3) he couldn't bear to get his girlfriend involved.

caregiver. what a word.

before this, i never thought what this simple word really means. if not relating to any illness, i guess this is probably one of the sweetest word in the world. yet it become so bitter and sour when we link it to life and death.

this reminds me of myself repeatedly asking my wife if she wants a divorce. i know it's a stupid question. whether is it duty, responsibility, conscience, love or humanity, it's so difficult to make such a decision, even for the most cold-blooded person. i was just hoping that she was rational enough to visualise the possibility of becoming a widow at her young age or the burden which she's going to carry with her until dunno when. again, it's a common point i found between robert and me; i can't bear to get my wife involved too.

if who i hv now is just a girl friend, my decision would be damn clear, even if that means i'm going to lose my caregiver. i can't do the same to my wife. forcing her into a divorce would be more cruel than having me dying in her arms. reason is simple, becos we r married.

so... just like the so many cancer patients out there, i hv a caregiver too, and that's my wife. she tendered her resignation and will be working until end of this month. after that my full time caregiver. going without one is no longer an option, just hope that i will only require minimal care throughout my treatment.

getting the news (replayed)

it is interesting to read own story happening on other pple, although it's actually the other way round, other pple's story happening on me. nvr in my life i expected myself to be picking up a book like this: true story of a cancer patient. i dunno what i wan out of this book. definitely not some kind of motivations to fight (which i believe i hv more than robert schimmel), nor means to humor myself or pple around me. perhaps i just wanna know if pple of "my kind" were having the same thinking as me. or am i right or wrong to behave what i'd behaved. am i the only weird specie in this world.

the book started with the chapter "getting the news", quite similar to my blog huh? hehehe... robert were with his parents in the clinic. this was surprising to me. is he some kind of mummy's boy? it's so funny. i always believe that the best condition to receive the news is to receive it alone, so that one can slowly digest and straighten the thoughts out. well, it proved that i'm right. "I have to find my way back to reality and comfort my parents, my protectors. Even though I'm the one with the big C stamped on my forehead, I feel I have to protect them, I don't know if they can deal with this." so i was fortunate i was all alone when i received the news.

the doctor told robert, "There's Hodgkin's disease, and non-Hodgkin's disease. You have non-Hodgkin's lymphoma." robert cracked his first joke, "just my luck, I get the one not named after the guy." i like this one. hahaha...

then what he thought was exactly the same as me, "I realize instinctively that even though I've been told I have cancer, I haven't been told that I'm going to die." so again, i'm not the only one on earth to think this way, i'm normal. hahaha...

"Some patients find that using marijuana during chemotherapy helps with the nausea and appetite loss. It's actually safer and a lot more mild than most of the anti-nausea injections they give you..." damn, why is this not offered in singapore? hahaha...

"You said I hv 6 to 8 months if treatment doesn't work and 51% of going 2 yrs without it coming back. i don't like this 2 options. There's another option. A third option. And that is that it never comes back." i guess this is what everybody would called "positive". i'm not being positive, and i dun find anything wrong with that. being positive is not just by telling urself that u'll be ok. u gotto believe it. i dun think robert believe that he'll be fine. he's just not prepared to die. i'm prepared to die, anytime. but that doesn't mean that i'm giving up. i dun need that "blind" faith to boost my fighting spirit. i'll fight the battle my way.