recovering

for the past 3 days, i think my overall condition is slowly improving. i used the word overall, becos certain part of the body seems to get worse. it took me sometime to confirm that my worst time is over, now i'm recovering.

the best improvement is of course the number of hours that i'm able to sleep. with sufficient sleep, it helps in the overall recovery. my pain score dropped drastically. two days ago, i was still getting sharp pain every one or two hours. now, i'm getting it like once or twice, at most thrice a day. becos of that, today i only took 2 paracetamol, and one 5ml spoonful of morphine.

i tried to stop the anaesthetic gel but i couldn't. the only part of my body that isn't improving is the throat. it seems to get more and more painful over the past few days. otherwise i'm quite confident my tongue can do away with the anaesthetic gel.

my burned neck looks horrible, but it's also recovering. the wound dried up pretty fast and the clots were peeling off automatically.

in fact based on my overall "performance", i'm quite confident that by 15th aug, i should be able to go back to work, do some short runs, eat some solid food etc.

psychological change

i kept mentioning that psychologically i'm not alright, but so far i didn't mention what really happened in me that makes me come to this conclusion. last night, i finally talked to my wife regarding this and we'd come to the decision that if this continues for a month or two, i'll seek help from a psychiatrist.

so what happened so seriously that i think i need to see a psychiatrist? remember the MRI experience i had somewhere in May? you can read it if u don't. http://bluesky-mg.blogspot.com/2010/05/anxiety-disorder.html

there's one thing i must emphasize, before i got contacted with this stupid big C, i was perfectly alright. when i was a boy, i always like to hide myself in the cupboard, under the bed, the better concealment, the more secure i feel. i had no problem with complete darkness or enclosure.

but now, the problem has degenerated so much. when i woke up in the middle of the night, i need to put the light on. if not it would took me less than 5 minutes to feel suffocated, than the next thing i'll do is to dash to the window to catch my breathe, as if my head was immersed in water.

this is still not so bad, as i'd made an agreement with my wife that if i turned on the light in the middle of the night, just ignore me as i don't want to stress myself into sleeping.

nowadays my body gets cold very easily. my bathroom has got a small ventilation window. i wish i could shower with the window closed, but i couldn't. the moment i closed the window, the whole bathroom is enclosed, and i started to feel suffocated. ok, this is still quite private. the next one is going to affect my social life, definitely.

since i'm now much weaker than before, my wife and i always take taxi to and fro the hospital. guess what, the moment the cab door was closed, i started to feel discomfort. despite the air-con is blowing, the interior of the taxi is big enough for me to move around, the only thing i can do is to close my eyes, head down and hands together to prevent myself from winding down the window.

i think i had developed rather serious claustrophobia over this period of time. the causes could be due to all the scanning and the radiation therapy. these could hv physically worsen the situation. another possible cause could be due to the illness itself, ie. CANCER. ever since i was diagnosed with this, everything is beyond my control, the only things i'd been doing r follow instructions, don't give up, endure. as a cancer patient, i lost all the freedom to choose (unless i choose to die). my life was being confined to that of a cancer patient. i'd been confined for far too long and i refused to confront the feeling as i worried i might just break down. that's how it resulted to my condition now.

whatever it is, i hope this thing will go away before i returned to normal daily life. if not, i'll seek treatment. since i'd gone thru cancer treatment, what is claustrophobia, right?

best medicine

yesterday when i see Dr. DL, i told him abt that special pain in the nerve which occurs from the tongue/throat all the way to the head/ear. he prescribed me with gabapentin which is suppose to be a pain killer for the nerve. i also asked for more lidocaine as i need it for food intake.

before i gone to bed, i took some morphine and the gabapentin. then kept my finger crossed, hoping for a better night. i slept at 1am, woke up at 3am, had a sip of water, realised that it wasn't that painful like before, i continued to sleep, i woke up at 6am, had another sip of water and was happy that i could actually continue to sleep!! i stacked the pilllow, half lying on bed half leaning on wall for another hour, i had the best night for the past 3 weeks (or maybe longer?).

due to the lack of sleep, i'd been experiencing aches all over the body. arms, shoulders, back. my body had become very rigid, and my engine had been burning extra hard to keep it going. suddenly i got a full 7-hour of sleep, this is the best medicine for my conditions now.

after the sleep, i felt so much better (or could it be due to the turning point?). at least i'm totally refresh now. my breakfast taste better too. it boosted my confidence in fighting for recovery. 2 weeks, my target is to get fully recovered (from the side effects) in 2 weeks time.

Last Chemo

past few days, i started to chicken out. i thought how nice would it be if this wk the chemo got omitted again. that means, my last day of treatment ended last friday. probably in a day or two, i should start feeling better. but if i am to go for the chemo tomorrow, then i need to spend another 2 wks to combat the side effects of chemo. and with the chemo, my immunity becomes low, my recovery becomes slow.

my weight as of today is 63.2kg. the turning point that i'd been looking forward to is not here yet. today, the pain my throat got worst compared to the past. my blood count is still bad, but can still make it for chemo.

Dr. DL reviewed my conditions, and decided not to add on to my misery. based on the bad but still can go blood test, he concluded i'm still unfit for the chemo. so..... YEAH!!!!! my last session of treatment ended officially last friday. no more chemo, no more radio. i've 5 days of rest from my last radio, i should be seeing the turning point in a day or two.

TURN

i'm still waiting for the TURN. over the weekend, i was still feeling worse over each day. although i know the turning point won't be so near (probably thursday), i still hope that it will come earlier... maybe tomorrow? since today i'm not going to do anything to worsen the condition?

turning point is so important to me. it means light in the darkness. it means tomorrow will be better than today.

so how bad am i feeling now? well, basically all the pain just got more severe. more drugs taken, but lesser relief, shorter sleep hours. body become very tired because i hv problem lying down. mouth and throat become very very dry. when i drink water, it just passed thru the mouth and the throat but never stay. even drinking water is a torture to me. the only thing that gets better (not bad huh? at least something gets better) is my numb fingers. the numbness is at least 80% gone. i can clip my nails using my left hand again.

psychologically i'm not so alright now. i can feel that fear has slowly invaded my mind. fear of giving up. i feel myself like a cliffhanger, hanging on a cliff with no end. looking up i dun see the sky, looking down i dun see the ground. physically i'm exhausted. letting go is so easy. hanging on? who knows how long more i need to go?

last one

last night i took a spoonful of morphine, and i went to sleep. in the middle of the night, i woke up twice due to the dryness in the throat, drank some water, endured a while for the pain, went back to sleep. consider the best sleep for the past 2 weeks.

woke up at 8, breakfast at 9, morphine at 10, then i knocked out again. woke up at 12, i felt very very tired. if not becos i need to eat my lunch then go for the last session of radio treatment, i would probably sleep till 2pm, morphine again, sleep to 6, morphine, sleep to 10...

damn. this is not the kind of life i want. at least not now.

nothing special with the last session. after i finished, the therapist ask me if i wan to bring back the mask. during the split second, thoughts were flying across my mind. it's a weird thing that pple will wan to keep the mask. why would i wan to bring the mask home? souvenir? keep in the store room so that the next time my friend visit, i'll tell them, "nah, this is the mask i used for radiation therapy..."? bring home wear it and take some pictures, then throw it into the rubbish bin?

i still keep the oldest pair of my army uniform which i worn since BMT all the way until i ORD until i finished my reservist. i still keep my super duper worn out jersey which i worn during every training session in my old college days. there r many things i would like to keep becos they bring back sweet and bitter memories of the olden days. but the mask? no. i think it'll only bring back tears and sorrows. nothing more than that. how i wish i could brainwash this part of he memory forever.

i was scheduled to see radiation oncologist one month later, ENT doctor two months later. then, byebye, i HOPE, i didn't need to go back there again.

now, i'm left with the last session of chemo.

getting ready

when it comes to this time, whether i like the idea of counting down or not it doesn't matter. becos everybody is counting down for me. from the auntie registrar in radiation centre, to the therapist, to doctors, nurses, whenever they see me they'll say something like "it's in sight", "tomorrow last one", "ending soon" blah blah blah...

i know they r happy for me. but there's something they dun see. Dr. DL said, "good thing is it's going to finish soon, but be prepared, the last week and the week after your last treatment would be the peak of ur suffering." yes, good thing is i'm going to see light, bad thing is, only after the darkest hours.

today, the last second day of my radio treatment, i'm getting a new kind of pain which is probably an accumulative effect from my last week treatment. becos of this new pain, i need to redo my battle plan. if i am to go on just like that, i dun think i can survive the toughest time next week. i used the morphine.

prescribed dosage is 10ml every 4 hours. i tried 5ml. morphine, one of the best substances in the world. it numbs u straight from the nerve so that the brain no longer response to pain, the effect is almost immediate. now i understand why it's so widely used during war time.

after the 5ml, i managed to sleep comfortably for 2hrs 35mins. then the new kind of pain came in which really drives me to my nerves. it's like toothache kind of pain (in the nerves, not on the body), i gotto keep banging my own head to relieve the pain.

that was the time i told myself i gotto use the morphine more. dun bother about the side effect. if i dun, i dun think i can make it thru next week. i'm going to learn to love it, kiss it, fight for more of it, make full use of it.

i hold my wife from going home this week. actually i knew that the past one week is a tough one for her. she deserves a break from this. but too bad, at this point of time, i need support.

morphine

i did not take any tramadol last night. this morning, i popped a tramadol after i ate my breakfast. before i reach hospital, the same side effect came in. generally milder than yesterday (becos yesterday i took 2), but what if i wanna throw out in the middle of the radio treatment? i can't imagine that.

in the end i informed the radiologist, they told me to signal them by raising my hand if i feel like throwing out in the middle of the session. i think this is silly. i already told them i feel like throwing out now. i dun think they can come to my rescue on time if i signal them.

tuesday blood test, wednesday see chemo doctor for clearance, thursday chemo. last week i failed to clear for chemo, it happened this week again. my platelet count improved only 5L, i need another 10L to clear for chemo. so once again, tomorrow no chemo. in addition to the weight loss (today i'm 65.4), the doctor suspected it could be due to my eating. i told him i lost my lunch and didn't eat much for dinner yesterday due to the side effects from tramadol. he told me to discard the tramadol and put me on morphine.

i dunno how to describe my feeling. i feel myself a guinea pig testing different kind of medicine. tramadol, i definitely dun dare to take it any more. morphine, god knows what will happen after i took it. i feel like going back to the most basic paracetamol though i know it doesn't help much. at least it won't worsen things.

Tramadol

when i see the doctor who in charge of my overall treatment, she showed her sympathy and tried her very best to help me.

for the pain in the throat and the head, she gave me a pain killer for severe pain, the name is Tramadol. i recalled that this was the same medicine the hospital prescribed to my mum the other time when she had a toe amputated. i was told to take 2 capsule each, 4 times a day. the other time my mum dosage is once each time, 4 times a day. so my pain is actually double that of losing a toe?

for my rotten tongue, the doctor gave a gel similar to that of bonjela, more lasting and cheaper, except it taste like tiger balm oil. this is the best thing i got. finally i'm relieved from the torture of rotten tongue.

all the torment from the past few days further reduced my weight to 65kg. the doctor was again very concern. she told me despite the treatment is going to end soon, but i still need the nutrition to fight off the side effects. if i'm not eating enough, it will hinder my recovery and prolong my suffering. initially i was thinking after the last session of radio, i no longer need to force myself eating, looks like things doesn't work that way.

when i reached home, the first thing i do is to apply the gel, then popped 2 tramadol into my mouth. things turned out to be quite good initially. my pain count dropped to 2 week new low. i dun even need to apply the anaesthetic gel to eat my porridge. my comfort didn't last very long then i started to feel a little nauseated. i stopped eating at 1pm, lie on the bed and that's it. the next few hours i couldn't even get up from the bed. my head was spinning, i had lots of hallucinations, i wanted to vomit but hv problem even reaching for the plastic bag which was just a metre away. i was so so tired but i couldn't sleep.

i threw out whatever i eaten during lunch, but i managed to keep my breakfast after hours of long fight. i think the pain killer (tramadol) is far too strong for me. but there's nothing i can do other than continue to lie on bed and wait for the medicine effect to go off.

finally, i considered myself "much better" at evening 6pm. i was totally traumatised by what happened in the afternoon. it's like suddenly i was being pulled into battle field, fought for 5 hours, managed to crawl out from it.

i surfed the net and this is what i found out for tramadol:

Contents Tramadol HCl Indications Treatment of moderate to severe acute or chronic pain & in painful diagnostic or therapeutic measures. Dosage Adult & adolescent >14 yr 1 cap as single dose. A 2nd dose may be given after 30-60 min. Administration May be taken with or without food Contraindications Resp depression, esp in the presence of cyanosis & excessive bronchial secretion. Acute alcoholism, head injuries & conditions in which intracranial pressure is raised. Patients receiving MAOIs. Special Precautions Decreased resp reserves; attack of bronchial asthma; heart failure secondary to chronic lung disease, hypothyroidism, adrenocortical insufficiency, impaired kidney or liver function, prostatic hypertrophy, shock or inflammatory or obstructive bowel disorders, myasthenia gravis; infants esp neonates; administration during labour may cause resp depression in newborn; may impair ability to drive or operate machines. Adverse Drug Reactions Nausea, vomiting, constipation, drowsiness & confusion. Difficulty in micturition, ureteric or biliary spasm; dry mouth, sweating, facial flushing, vertigo, bradycardia, palpitations, orthostatic hypotension, hypothermia, restlessness, mood changes, hallucinations, miosis, CV collapse & convulsions. View ADR Monitoring Form

i'm not mad with the doctor. but i think i need to cut the dosage to 1 capsule each time. this is really really no joke.

vomit

today, i finally vomitted. i think it is difficult to find a cancer patient who undergo chemo and radio but has never vomitted before. i just didn't expect it to happen today. usually my nausea peak is from saturday to tuesday after the chemo. but last week i didn't hv any chemo. i even stopped taking the anti-nausea medicine since last thursday.

what happened was, today after the lunch disaster (the 10 spoonful of porridge), i didn't eat anything. dinner time, i took out the remaining HL milk from the fridge, thinking that drinking some milk will be able to replenish some nutrition for the loss during lunch. i drank about a cup of it. then it started.

basically i didn't hv anything left in the stomach, so whatever went in just came out. the feeling wasn't that horrible compare to all the pain i encountered. in fact after the throwing out, i feel normal. just like i'd never drink any milk.

almost dead

it all happened during lunch. as usual, i took a pain killer, waited half an hour for my food (porridge+marmite) to totally cool down. took a spoonful of the anaesthetic gel, charge! i started to gulp and swallowed the food.

1... 2... 3... 4... 5... 6... ... 7... ... ... 8... ... ... ... 9... ... ... ... ... ... 10... i was shot down by my food. this is not the first time i encounter pain during eating. but it has nvr been so serious before. tears started to burst out from my eyes, mucas flowing down the nose, my whole body got stiffened and trembling non-stop. despite i got no voice, i was roaring like a beast. i felt like punching the ground, i felt like cutting my tongue away with a knife, i felt like banging my head against the wall. i started to lose my balance and i was about to faint, or maybe i was about to go mad or even die. my wife got a big shock, she hugged me in her arms, silently waiting for the effect to subside.

it lasted about 5 minutes. i apologised to her for giving her a fright. she told me she was thinking whether to call the ambulance or not. though the pain slowly subsides, i suffered from stomach cramps (probably becos i endured too hard). i was totally worn out after the 5 minutes. i rinsed my mouth, washed up and went to sleep for half hour.

endure

the past 4 days were really nightmare for me, and i think the worst is yet to come. my condition got worse and worse over time. now, i can no longer speak. i need to reject all the phone calls becos i lost 100% my voice. my throat is so painful it causes a very bad migraine. so instead of squashing my throat, most of the time i'm squashing my head. the ringing in the ears never go off for 3 days, even now it's still ringing. the best part, my tongue. i got two big holes on the tongue bleeding continuously. the pain, dunno how to describe, maybe like somebody using a hand-drill on the tongue?

every sip of water i need to force it down my throat. eating is a complete torture to me. frankly speaking, if i'd finished my radiation treatment, i rather go on empty-stomach.

half hour before any meal, i need to take the pain killer. before i "officially" eat my meal, i need to take the anaesthic gel. then i hv only 5 minutes to eat the food. the pain will start coming back after 5 minutes. u may think maybe the food is too hard for me. no, i'm taking soft liquid food like porridge and cereal.

well, most of the time i wasn't able to finish my food in 5 minutes. so what happen when the pain comes back? the very first time, i actually broke down and cried. my wife got a shock. i tried my very best to hide my tears from her, but no, the pain, the suffering, the misery overtook the rationality. my wife didn't know how to response to me. i could see the tears in her eyes, but she was trying very hard to control.

i learned the lesson. the moment the pain starts coming back, endure, eat faster, endure harder, eat even faster. if it gets too painful, stop.

the time that i spent lying on bed gets longer and longer. the pain is causing too much fatigue on me. sleeping is now the best activity for me, provided i can sleep. due to the pain and also the dryness of the throat, i need to drink a lot of water even in the middle of the night. so actually i didn't really get quality sleep at night.

pain

i'm getting some kind of unbearable pain on the tongue and in the throat. the tongue got too dry that it keeps sticking to the teeth causing the tongue to sore. as for the throat, i'm now experiencing pain even when drinking water. so eating and drinking has become a torture to me.

since my last chemo, i'd a new side effect, my left hand last two fingers r numb. the numbness does not go away no matter how i massage my fingers, how i move them. last sunday, when i was cutting my finger nails, i realised that all the fingers on the left hand were weak. i couldn't even clip my nails with my thumb and index finger.

today, i was told that my platelet count 60 is too low (normal is 150 - 400). Dr. DL said the cisplatin is affecting my bone marrow in producing platelets, and for that, i need to omit tomorrow's chemo. omit, meaning i'll hv 1 session less, no make up. he was very concern when i told him abt my numbness. i was prescribed with some neuroforte, which oso indirectly tells me that this is not a blood circulation problem, the chemicals probably hv some bad effects in the nerves. i was wondering if i did not voice out abt this numbness and go thru the next few sessions of chemo, will i eventually lose my left hand? from the facial expression of Dr. DL, this problem is more serious than i initially thought.

it's not too bad that i'm skipping the chemo tomorrow. at this toughest time (Dr. DL said one, the last two weeks would be the toughest time), skipping a session of chemo somehow lighten the misery. especially the weekend fatique and nausea feeling. i need a break. since i can't break the radiation therapy, a break from the chemotherapy is a consolation.

after treatment

today, i asked the doctor what to expect after the entire course of my treatment. this is what he said to me...

"after u finished ur last chemo, we'll ask u to come back every month. the first 2 months we will followup on all the side-effects. basically most of the side effects should be gone by then except the sense of taste and the dry salivary gland which would take months to recover. the third month we will conduct a thorough scan to confirm that u r cleared. usually the tumor is still there even after the treatment, but it will continue to shrink for a period of time until it's totally gone. so the scan is scheduled to be 3 months later. most of the patients would be cleared by then. only a handful will hv residual cancerous cells. if that's the case, we would conduct a surgery to remove any residual cancerous cells. the relapsing of npc is usually in the first two yrs. so u r require to come back every month for checkup. u r considered recovered only after u passed thru the first two yrs."

not so bad. at least i know i'll hv 3 months of peace after treatment. so sick of reporting to hospital everyday...

fear

deep in my heart, there's something that i'd been trying hard to avoid thinking about it.

some of my friends suggested i should do a count down. that should helps motivate myself during the tough time. thanks for your support and ur heart. i know u guys hv been keeping me in mind. but there's something u dunno.

yes, logically, i'm left with only 3 sessions of chemo, 12 sessions of radio, everything is going to finish in 3 weeks time. if i was in army, this would be my ORD date, if i was in ranger course, this should be considered end of my hell week. but dear friends, this is not.

who can guarantee after these i'll be remitted? who can guarantee after all these, all the side effects will be fully subsided? who can guarantee even if i got remitted, in the next 1,2,3,4,5 yrs there'll be no relapsed?

u know what is cancer? wiki says cancer is a class of diseases in which a group of cells display uncontrolled growth, invasion and sometimes metastasis. those cells r mine. u know how strong and fit i used to be? u know how difficult this thing developed in me? u know how difficult to kill these fuckers? they r not normal cancer cells, they r cancer cells in a fucking big tough man. i'm still alive, how would they die so easily? if the doctor tells me, "err... we didn't manage to kill the beast this round, i think we need to do these all over again." how do u think i'll react?

i'm scared. damn fucking scared. so scared i think i would pee my pants if i dreamed about it at night. dear friends, do u understand?

i know, it's something beyond our control, better not to think abt it. why count down? what is there to look forward to?

frustration

my appetite got worsen. i got too sick over the bland taste resulting me to feel nauseated whenever i eat my food.

my throat got worsen. it was more painful than last week. the dryness can be feel even without swallowing the saliva. i dun feel like talking anymore. i wish i dun hv to talk to anybody, not even to my wife. some times i feel like telling her to shut up though she's just trying to find topics to cheer me up.

my stamina got worse. i now walk slower than my wife. i shoke her hand off this morning becos i felt that she was walking too fast. i had problem climbing a flight of 20 steps.

i started to get ringing in the ears. it seems to get worse over time. the ringing sometimes got so irritating i will just cover my ears as if the noise came from outside not from inside. the doctor said that this is something he can't help. can only hope that it'll slowly subside after the treatment (it may not subside).

my nose keeps bleeding for the past few days. in my nose i got plenty of blood clot which badly obstruct my breathing. whenever i try to clear the clot, it'll bleed again until new clot is formed.

i lost another kg this week. now i need to stuff all my belongings in the pocket to measure 67kg. doctors were very unhappy about my weight but there's nothing much i can do. i'd oredi tried my very best to eat. based on my current condition, i think i'm oredi eating beyond my capability.

physically i'm still coping quite well. psychologically i feel like shit. real shit. i forget abt giving up. not becos i dun feel like giving up, but i should hv give up in the beginning. now that i'd come to this stage, there's no turning back. LL must finish it.

drugs

my first line of defense was broken when i decided to take some drugs for pain relief. i wasn't trying to be a hero. all the while i refused to take drugs becos i knew one day i'll need it. i dun wan the day to come so soon. today, when i was doing my chemo, a man who is oso suffering from NPC but came in about a week later than me, he is oredi on morphine everyday. the nurse told him to be prepared for a feeding tube inserted into his throat once he got constipation.

i dun wan that. i can't imagine how it feels to hv something dangling in the throat, swinging swaying when i walk around.

to date, i was prescribed with whole bagful of medicine. different kind of anti-nausea pills, pain killers, lozenges, "appetizer" (to stimulate the appetite), laxative pills, "asshole poker" (to be poked into my own asshole when i hv constipation), anesthetic gel etc etc. i doubt the drugs r going to improve my quality of life in any way.

today, i decided to give up and try something. the reason for my giving up is becos as of today, i gave up everything with menthol or mint. i can no longer stand even very little bit of mint. it cut deep into my tongue and the pain lasted hours. last night after i brushed my teeth, my entire face turned pale, i was sweating. something stronger would probably knocked me out in the toilet. then i'll be the first man in history, admitted A&E becos of brushing teeth. so today i changed my toothpaste. i'm now using the children toothpaste, blueberry flavor. hahaha...

no more lozenges, meaning i got to throw away all the fisherman's friend, ricola, woods peppermint lozenges etc. so now i must look for alternative. i picked the anesthetic gel prescribed by Dr. DL. the drug name is xylocaine viscous solution. the instruction by doctor was 2 teaspoonful, but the box indicated 1-2 teaspoon. so i tried with 1 teaspoon.

it taste like... sorry, beyond description. i'd nvr taste something like that before. it's not bitter, it's more unpleasant than bitter. really, beyond description.

the effect, steady. in 10 minutes time, the mouth down to the throat no longer belongs to me. 100% cold and numb. i can shout louder than the NDP parade commander. i can eat kentucky fried chicken, swallow the whole piece of chicken without chewing it. the "magic" lasted only half hour.

yes magic, real magic. although the feeling that the mouth no longer belongs to me wasn't that great, i suffer no pain for that half hour. i eat my food like my normal days (except it's tasteless).

i dunno how to thank Dr. DL. yes, 对症下药. i dun need "appetizers", i dun need pain killers which r going to cause me constipation, i'm no fucking gay and i dun enjoy poking my own asshole. the radiation doctors were not answering to my calls.

Dr. DL is great. i didn't tell him much. i just told him that i no longer eat so well becos of all the sores in the mouth and throat. he didn't even tell me he was going to give me these. i only knew it when the pharmacist passed it to me.

if i'm going to use this before my every meal (i'll still try not to), i will never lose weight, and i consider my quality of life to hv GREATLY improved.