return

some pple believe that the deceased will come back on the 7th day (to be precised, the 6th night after demised). questions hv been brought out regarding how true it is. all the while, i believe that the deceased live in the heart of the living. if u believe, then anything may happen. if u dun, then it does not exist at all.

i miss my dad. my dad is somebody who refused to go out of the community when he was still around. he is the kind of person who think 一动不如一静. he didn't know how to take a bus, probably didn't even know how to take a cab. before he retired, he walked to the market everyday (he was a vegetable seller). the very last time he travelled longer than this, was 1995, he went thailand with my mum for tour. after we moved into the new house, he refused to even go downstairs for a walk.

when he passed away, one of the biggest worry i had was "does he know how to come home?" "is he trapped in the hospital?". this would be dreadful to him, being trapped in the hospital. i'd rather he is being trapped at home.

because of this big worry, and also IN CASE, the return on the 7th day is real, i decided to prepare something for him.

i bought a thin booklet, sat down with my sister, each of us use a marker pen to write messages for him (since it was believed that the living should avoid the deceased when he returns).

before 11pm, i burned a joss stick, prepared his favourite fish head soup, a can of ABC extra stout and some groundnuts, lit up a stick of marlboro, on the tv, left the living room lights on, door opened and then went to sleep.

the next day, everything seems to remain the same, everything untouched. my wife said that the soup level dropped by 20%, my mum said in the middle of the night somebody knocked on her door. i didn't believe.

so my biggest worry was still there. is my dad being trapped in the hospital? for once, i really thought of making a trip to cgh mortuary, wander a while then come back home from there, hopefully he spotted me and follow me back home. but, i'm not superstitious enough to perform such a silly act.

i continued to surf the net, found more info on "returning of the spirit". then i came across an article, saying that the taoist actually has a different calculation for "returning of the spirit". it said that when a person passed away, his spirit will go underground. the depth could be calculated based on the day and the hour of his death. then everyday his spirit will raise by 1 foot. until he finally raised above ground, then he'll come home. the calculation can even tell what time he'll reach home, what time he'll leave and the direction of his arrival and departure.

the calculation wasn't difficult. i computed that my dad was buried 13 feet underground, so he'll come back home on 10th November 11pm, he'll leave the house at 1am. i skipped the direction part cos i was only concern whether he knows his way back home.

on the 10th, again i bought a can of stout, a packet of hand brand groundnuts (his favourite), a packet of marlboro and two BA BAO (pork bun, oso one of his favourite). i laid out everything properly, moved my laptop to the dining table, created a playlist with all the songs i played for him on the night before he passed away.

i closed my bedroom door, off the light and lied on the bed listening carefully to the surrounding. about half an hour later, suddenly my wife beat on my arm and complained that i was making too much noise that i was disturbing her sleep. i told her i didn't make any noise, in fact i was awake! she ignored me and fell back to sleep. 5 minutes later, she beat me again and made the same complain. i stressed to her that i was all the while awake and i know better if i'd made any noise.

i had a very bad night. i didn't really sleep, but daydream throughout. i didn't quite remember what it was all about, but obviously it has got something to do with my dad. 4am, i went out to clear the things i prepared for my dad. again, everything seems untouched. i slept at 5:30 in the morning.

the next day, i asked my mum did she had any special encounter. she said at around midnight, she heard a noise like somebody sitting on the sofa, rubbing the skin against the leather. i thought it was psychological. i proceeded to ask my maid the same question and to my surprise, she gave the same answer as my mum.

i asked my wife what exactly was the noise she heard, she said it was a groaning sound came from the direction i was lying. the groaning was continuous and it was too noisy for her to sleep. at first she insisted that i was the one who made the noise, until i asked her this question, "did u ever hear me making such noise in my sleep?"

my dad always made such noise in his sleep. continuous groaning as if he was in pain (but actually he wasn't, probably just too tired).

so, did my dad came back? i guess so. at least now i no longer worry about him couldn't find his way out of CGH. i'm now worrying that he is feeling too sad to part with us.

爸爸，安心走吧，你不走，来世我们怎做父子？

funeral

we held a 4 days wake for my dad. the wake to us is merely something we did for the living ones. for us (me and my sister), nothing beats the feeling of losing our dad. the pain is something we'd not encountered before. the saddness, hurt so deep that we don't feel like living.

my dad, for once, he was the most important man of my life. when i was a little boy, whenever i ran into trouble, my dad will back me up. i felt safe and secure, becos i know my father will always stand by me. over years, i'd grown up. i made my own decision and solved my own problems. my dad no longer plays a important role in my life. now that i'd lost him, i realised that there isn't a second man to take up his position. though i'd been independent for so many years, the role of "most important man" has never changed. he is still the most important man of my life. in fact, he is the one and only man of my life.

on the funeral day, i suddenly had a weird thinking. i tried to imagine how my dad felt when my grandparents passed away. though i wasn't around to see how he handled his emotions, i guessed he was man enough to take up the responsibility of the family. as the eldest son, his emotions will affect the whole family.

i decided to suppress my emotion. i shall not cry before my dad. i am proud to be his son and i shall let him be proud of me. it was real tough, but i made it. i only cried after the coffin was pushed into the crematorium, after the door closed.

discharge

i don't remember how many times we cried in the hospital. the moment the body was being pushed out of the mortuary, i cried.

i was the one who sent my dad into the hospital. we took the ambulance in, now we leaving the hospital by the casket vehicle.

i always thought that one day he would be discharged, i will bring him back home. yes, he may be bedridden until the day he left us, quality of life may be a big question mark, but we will spend more time with him, plan something for him and give him some new pass time activities.

even until the very last night of 回光返照，we still using "discharge" as a bait to stimulate his fighting spirit. we hid the truth that he may not be able to walk out the hospital alive. when i saw his body being pushed out of the mortuary, the first question that flashed my mind was, does my dad know the way home? it was his greatest wish since he was warded. now, finally we were going home...

i couldn't help crying and shouting...

老爸，我们回家了...

my HERO V

29th Oct is a friday. the doctor gave my dad a packet of blood due to the dropping in blood count. the drop was quite gradual, it didn't seem like it's something emergency.

as usual, i visited the hospital immediately after work. i saw my sister sitting outside the ward eating her dinner. she said dad didn't seems to respond to her when she tried talking to him earlier.

i went to my dad's bed, saw him opening his eyes. i called him and he turned his head to me. he was responding! i asked him if he wanna go home, he said yes. i asked him if he feels bored, he said yes. my sister was also very shock to see dad being so responsive. she wet a towel, clean his body, powder him, wet his lips, gave him a little bit of water. then we massage his hands, his arms, i played all his favourite music for him... to our surprise, he stayed awake for longer than an hour.

when the visiting hours over, we decided to stay longer for the quality time. since day 1 he was admitted to the hospital, he has never been awake for more than 1 minute. he had never open his eyes for more than 30 seconds. but this time round, he was awake!

we off the music, stayed by his side, holding his hands until he slowly fell back to sleep.

saturday morning, 30102010 845am, the doctor called me saying that my dad was not breathing so well, oxygen level dropped to 58% and now gotto put him on oxygen mask. the doctor said, "your father is very ill now, he may leave today..." he paused a while, probably thought of how strong our father was for the past two weeks, he changed his mind, "i mean 'may', he may not. but maybe you want to inform the rest of your family?"

i called my sister telling her what the doctor told me. we were not worry at all. for the past two weeks, there were more serious descriptions and in the end nothing happen. that's our dad, he won't be defeated so easily. just another false alarm.

since it's a saturday, we decided to go hospital earlier despite it's a "false alarm".

we arrived the ward at around 1030. my dad was being put to sitting position, unconscious, eyes closed. the BP machine attached to him showed that his SPO2 was 95% and his pulse rate 50. see? i said oredi, my dad is a fighter, he sure make it. his heart was still beating strong.

we held his hands and talked to him though he didn't seems to be listening. then suddenly, the SPO2 started to fluctuate. i thought the SPO2 wasn't properly fixed on him, so i tried to adjust it. the nurses came in to fixed an ECG on him. we didn't know what it means. then... we slowly know what's the purpose of the ECG.

i saw the pulse rate dropped to 15, then back to 50, then 25, then 0, then back to 45, then... then i started to cry... i wasn't prepared. i dunno... i refused to let him go, i pressed on the oxygen mask and the pulse rate came back. i did a few times, then it slowly loses ithe effect. i gave up, and i spoke my last words to him...

爸爸，不要怕，你走好，不要担心，我们长大了，会照顾自己，会照顾妈妈。走好，别怕。。。

my HERO IV

the angiography was done in thursday. the doctor considered it to be a successful one as they managed to find another bleeding spot and clipped it. to-date, no symptoms of renal failure (30% risk for angiography). though everythings seems to be running fine, the doctor said the angiography was the last thing they did on him. subsequently, they'll just focus on "keeping him comfortable". if he bleeds again, give him transfusion; if he bleeds massively, do nothing.

my dad continued to stay in the ICU for a few more days, the doctors wanted to monitor closely if the blood pressure or bloodcount falls again.

most of the time, he's "asleep". frankly speaking, it's quite difficult to tell whether he is unconscious, sleeping, or awake with eyes closed. sometimes when we called him loud enough, he'll open or tried to open his eye lids for 1 sec, before the eye ball turn to focus on you, his eye lids closed again. sometimes when we tried to hard to wake him up, his breathe will shorten and his heart rate will shoot up.

i was very happy when i was able to catch his attention. we gone through all these just to buy more time with him and we succeeded. other than our decisions, the biggest factor is of course our dad, our HERO who fought his way through.

the next 3 days were rather peaceful. blood count stable, blood pressure maintained. sunday afternoon, they transferred my dad to general ward because they felt that he has stablised, no point monitoring him real time.

despite the stable conditions and "improvement", i dun feel good. i suddenly recalled what the ICU doctor told us initially. ICU is not a good place to say goodbye, if possible, we will send him to the general ward. i can't help thinking that if something happened to my dad again, they r not going to save him. yes, he may seems alright now, but just another incident will take him away.

my HERO III

after the doctors told us so many times "be prepared", "critically ill", "let him go comfortably", we were well prepared that we'll be losing him anytime. yet it was also then, situation seems to improved.

his conditions were quite stable. thursday noon, they perform angiography to catch another bleeding point and block it completely. things turned out to be pretty good. the doctors called us in for meeting again. this time round, they used the word "future plan" and for the first time, never tell us to "be prepared". i think they finally realised how strong is my father. we'd been telling them many times that my dad is a fighter, he will fight all the way to the very last minute. he didn't want to die, just like me. u may consider we are cowards, fear of death. we hv different perception of life. we only get to live once, we dunno if there's a heaven or hell, whether there's rebirth. this may be our only chance to live, to feel, to think. no matter what (as long as it's not too painful to live), we'll live till the very last moment of our life.

so what's his future? the doctors said they'll continue to monitor him in ICU, until he is stable enough, then will transfer him to the general ward. the angiography is rather successful, but that was the last thing they had to do on him. should any internal bleeding occurs, if minor, they do transfusion, if major, they'll not do anything. nothing to sign, nothing to decide, that's my dad's "future".

dad fell into very deep sleep. maybe he was just too tired to remain awake. when we shouted for him, he opened his eyes a little bit and gave some minimal reactions. i was very very happy. before this, i thought i may not get a chance to talk to him anymore. now, i was given an opportunity to tell him everything i wanted to say. how can i ask for more?

we started to discuss what to do after dad's departure, the ritual style, which columbarium to choose, what to do with the maid (we employed her to take care of dad) etc. no doubt the doctor is getting a little positive, it didn't cast much effect on us. i see the whole situation as, "u had already done the last thing u can do, if something happened again, u r not going to do anything."

dun blame the doctors. we really seen how hard they tried to save my dad. since day 1 my dad got admitted, we'd seen many times so many pple crowded around my dad trying to bring him back to live. there wasn't a second patient in the ward or ICU who required so much attention. they didn't owe us anything, they did their best to save my dad and we truly appreciate that.

my HERO II

i always think that making a life and death decision for the love one is one of the most painful thing to do. to sustain my father, it could mean that we'll put him through all the sufferings which he may not want. to let him go, it means that we are going to kill him.

before things moved on to this stage, my sister and i came to a conclusion that no matter what, we will do our best to sustain him. but after knowing that it was a big C in his stomach, i changed my mind. i once said that if my cancer relapse at a age of 65, i will not fight. ill be glad that i'd been given so many extra years, and i'll go willingly. so operation is not an option for me.

anyway, we didn't get to make that decision.

wednesday morning abt 5am, my sister called me. the doctors from ICU informed her that our dad was critical. by the time we reached there, our dad was once again resuscitated. the doctors called us in for a meeting again.

conditions arose when my dad's heart rate shot up to 180. they defibrillated him once to bring him back. the defibrillation may had caused some damages to the brain. the sudden surge of heart rate is an indication that his heart is suffering from some damages from the previous low blood count.

to date, his heart, his kidneys, his lungs, his stomach and maybe his brain showed some damages. again, the doctor's recommendation is to let him go.

since operation is no longer an option, the next option we have is angiography. we signed the paper and the doctor will do it when my dad's condition is considerably stable.

i didn't spend the rest of the day in the hospital, i got another hospital to visit, SGH National Cancer Centre, to get my report for the 3-month post treatment MRI and blood test. it was a big thing for me. if i was cleared, i could consider myself remitted. if i wasn't, i may need to go for operation to remove residual cancerous cells.

before my dad was hospitalised, i was quite worry about this day. my life had slowly gone back to normal, i really dun wan to hv another big change. but since the day my dad was hospitalised, i totally forgotten about worrying.

when i walked towards NCC, i had a feeling that time has gone back to the day i went to ENT clinic, when i was diagnosed with NPC. it was a horrible feeling. after that day, my life changed drastically.

i cleared both the MRI and the blood test.

suddenly i had a feeling that my dad had taken away the illness from me. 30 over years ago, he gave me my life. today, he exchanged his life for mine.

my HERO I

saturday night around 9pm, when i came home from shopping, my maid told me that she had problem waking my dad up. other than looking a bit pale and fatigue, he looked absolutely normal to me. but when tried to wake him up, he just didn't respond.

i called for an ambulance, the paramedics came. an hour later, we were at cgh. at that point of time, i did not think that my dad's condition could be critical. i thought it was probably caused by his parkinson. drowsiness, fatigue, maybe he fainted, maybe he's just too tired to respond. the answer we got from the A&E doctor was very shocking. she said a normal person blood count is 14, but my dad's blood count is 1.5. she had never seen a living person with such a low blood count. as such, my dad's condition is very critical. he may be gone any time. they need to give him 2 packet of blood despite the risk that his heart may not be able to take the sudden heavy workload.

3am in the morning, the war was over, my dad successfully took in the 2 packet of blood, which increased his blood count to 4. they did some basic scans on him but could not find the cause of his low blood count. they called it a day to prevent further complications from occuring. they considered my dad as critically ill and his condition was life threatening so we were told to remain contactable in case of emergency.

the weekend was quite a peaceful one. my dad just slept through the day and night. we woke him up, he only gave a sentence or two, then he fell back to sleep. the doctor planned to give him 2 or even 4 more packets of blood to bring his bloodcount back to normal, but the cause for the low bloodcount is still unknown.

Monday evening, i met my sister in the hospital after work. after 2 more packets of blood, my dad's bloodcount shot up to 11. his vital stats showed that everything was fine. but surprisingly we had problem waking him up. the doctor woke him up by beating his chest. again, the doctor said the additional blood may cause his heart to overload and stressed that he is "critically ill", he may go anytime, we need to prepare for the worst.

despite all the negative comments given by the doctors, i had a very strong feeling that my dad would be alright. he is a very strong man, like me. i inherited my strong will from him. last year when he was admitted to hospital due to water retention, they did a thorough scan on him, he was almost 100% healthy except for his parkinson and poor absorption of protein. the doctors said his heart and lungs were perfect.

Tuesday evening, when i was on the way to the hospital, my sister called me, told me that the doctors were transferring my dad to ICU because of a sudden drop in blood pressure. my confidence was drained away all of a sudden. i'd been building castle in the air by assuming my dad's good health. my dad is critically ill, he may not be able to leave the hospital alive, we may be losing him any time. i cried my way to the hospital.

doctors, nurses were crowding around him, they were trying very hard to stablise his conditions. my sister and i just sat at a distance apart, weeping, worrying, hoping, praying.

my sister told me earlier on the doctor came to woke him up asking him "uncle, lee ho bo?" (uncle, how are u?) my dad said, "wa jin ho" (i'm good). the doctor told him, "uncle, lee bo ho." (uncle, your condition is very bad).

the doctor gave him additional blood and maximum medications to sustain his blood pressure so as to do a endoscopy to detect internal bleeding spot. again, told us, if the blood pressure dropped, there's nothing they can do, be prepared. of course, based on my dad's condition, the endoscopy is again a high risk procedure for him.

few hours later, we got a good news. the bleeding spot was found in the stomach, they managed to clip it, and now the bleeding has stopped. yet, we got a bigger bad news. cancerous lumps and tumours were found in stomach, based on the conditions, he may bleed again any time.

doctors called us in for a meeting. we were given some options.

1) perform an operation to cut part of the stomach away. the advantage is this will stop the internal bleeding, may even cure the cancer if it has not spread to other organs (which is not quite possible). but there's one whole list of disadvantages. given my dad's condition, he may die in the op. after the op there's only 15% chances the stomach will heal, most probably it'll take just a few days for the stomach to tear and cost his life. after the op, he probably need to be fed thru tubes till the day he left. after the op, the cancer may still be there. after the op, he may need to go for dialysis.

2) perform angiography. using radiography technology to find the bleeding spot and stop it if another bleeding occurs.advantage is lesser disadvantage. risk is much lower, except that there's a 30% chance his kidney may totally failed. disadvantage is lesser advantage. it doesn't help the overall condition in anyway, it just prolong his life.

3) let him go. option highly recommended by the doctors.

we were told to seriously think about it and give them an answer asap.

my first 10km

with the hydration belt on, the longest run i did was 6km. i felt quite uncomfortable wearing it, but it really solved my hydration problem. without water, i can never run beyond 3.5km.

today is 101010. it's also the event day for Mizuno Wave Run. i signed up this run together with mizuno mt faber run way before i started my treatment. at that time, i thought the mt faber run marks the beginning of my treatment, and the wave run should mark my recovery from the treatment. if i'm able to do the wave run, it probably means i'd recovered. of course that was just my initial thought.

before the run, i was feeling a bit stress up as i doubt i could do the 10km. in fact, i had some bad dreams last night. i don't quite remember what they were all abt, but mostly related to the run itself. i know there's no big deal even if i dropped out halfway, i'm just hoping that life can slowly return back to normal.

a friend of mine ran the mt faber run with me. today, my sister ran with me. i think i'm really fortunate to have all the support from family and friends during my toughest time.

as i said, i had no confident running 10km without walking. it's been more than 4 months i last did a 10km. so we started off slow and maintained the pace throughout. when i felt tired, i'll tuck in a bit and slow down a little. i gained my confidence when i crossed the 7.5km mark. and i was glad to realise that i could still go further.

i took 1hr 19 minutes to finish the 10km. it's not fantastic, but i love it and i accept it as my personal best timing. i don't need to beat other pple, i just need to beat myself and i did it.

Recovery Report VIII

it's 2am in the morning and i just came back from outside. friday night, i got a phone call from my klang friend, he and the boyboy would be driving out to singapore on saturday to pay me a visit. the news got me so excited i almost couldn't sleep. 有朋自远方而来，不亦乐乎。

we had not seen each other for more than 5 years. in fact for no reason, we didn't even contact each other for 5 years. still i never forget the time when i was in klang. it was one of the most carefree period of my life. i hv far too many good memories when we work and play together.

they reached my house at 8pm (after 5 hours drive). the boyboy has grown to be a man bigger than me (in size). it seems like yesterday that we were walking side by side and i just rest my arm on his shoulder. now he's too tall for that. hahaha...

my klang friend brought many fresh fishes to me, and two boxes of bird nest. he's not doing very well at the moment, so from the gift, it's not difficult to tell how much he valued me as a friend.

we just sat in the coffee shop catching up all the lost stories for five hours, then they started driving back to klang. imagine that's how they burned 15 hours of their precious weekend.

friendship is priceless. i dun think i need to do anything more to show how much i welcome them. i know they can feel it, and i can feel it.

the past one week is again a better week for me. after applying the ear lotion, the ringing seems to reduce a lot. still ringing, but it's much "softer". i tried bringing some water during my run, and i could finally run more than 4km. i bought a hydration belt hopefully it helps to prolong my running. next sunday would be the mizuno wave run. it would be my first 10km run after the treatment. i thought if i'm able to last 10km (without walking), i shall post the finisher medal to Dr. DL to express my gratitude in his effort and encouragement.

Recovery Report VII

yesterday, i went back to SGH ENT clinic for my first ENT post treatment review. i suddenly recalled what Prof. B. said to me during the last visit. "i need to refer you to national cancer centre. there's nothing i can do for you now. i'll see u again 6 months from now. in the mean time, i wish u all the best"

it's been 7 months since the day i know that i'm one of the specially selected person to fight the battle. 7 months... how time flies... i hv no prejudice against anybody in ENT, but i really hate the feeling of going back. perhaps i had been hit too hard during the previous visit. i received a piece of shit from ENT, and it had changed my life forever.

i waited 2 hours for the consultation. Prof. B said that my right ear is infected, which explained why i was feeling giddy the past 2 weeks, and could possibly be the reason why i get persistent ringing in the ear. he prescribed some ear lotion to me and scheduled an audio test for me at my next visit.

the next thing he did was to insert a scope into my nose and took some pictures. then he was very pleased to tell me that visually, my tumours (actually there were 2, one big one small) are gone. it was funny. i used the words "he was very pleased", becos he appeared to be happier than me at that point of time.

i dun deny that before the scope, the idea that i may not be healing that well bothered me a little. but this is only 2 months from my treatment. it does not mean that i'm recovered. in fact it does not even imply that cancer cells no longer exist in my nose. it's only "visually cleared".

i'm not being negative or pessimistic, but after all these while, i'd learned one thing. focus on the journey, not the destination.

so, let's forget about the destination. some good things along the journey i would like to share. this week, i had great improvement in my sense of taste. last friday, i met up my friends for dinner and the set dinner came with a complimentary cup of coffee. once a coffee lover, i parted coffee for 7 months. the taste of coffee reminded me that life is suppose to be full of fragrance. though alot of things have changed and they can never be reverted, alot of things still remain the same, until the day i die.

other than coffee, the other thing that i tried was curry. coffee and curry were the 2 things i missed the most during these 7 months. i dunno how to express the joy when i found out that curry is "acceptable" by my taste bud (and most importantly, it taste like the old curry i used to know). at that moment, i really feel like crying, it seems like everything has gone back to normal...

Recovery Report VI

last night, i received a phone call from malaysia. the caller is my long-lost co-worker as well as business partner when i was in klang. he received news about my illness (i didn't know i'm so famous that my news can travel 400km to klang) and had been trying very hard to contact me.

i can tell from his voice how much he worried about me and how anxious he was to find out abt my condition. i was very touched. at the moment, how i wish i could see him face to face and give him a good hug. shortly after we hung up, my phone rang again. this time it was from a boy who used to work for us when i was in klang. he even remembered the funny nickname i gave him 6 years ago.

when i was down with all the bad effects, there r numerous nights i thought of going back to klang for a visit. in fact one of the biggest regret i had at that time, was that i nvr pay klang a visit before i started my treatment. i missed ah bin ba kut teh, i missed ah peh ba chang, i missed the taman sentosa char kway teow, i missed the chicken feet in pulau ketam. i missed my good friend, and this cute little boy who adores me alot in the past.

they promised me that shortly they'll pay me a visit in singapore. i can't wait for the day to come. it would be even better if i could be there, but i doubt i'm fit to travel based on my current condition.

last thursday, i had some new side effects. my voice turned hoarse, my puffy face and neck become more puffy. i started to get some giddiness, some head-spinning feeling when i walk. i dun feel weak, but i just seems to hv problem balancing myself.

i rested over the long weekend, and i felt slight improvement at the beginning of the week. i called my treatment coordinator, told her about what i experienced, she said these r normal side effects pple may encounter after treatment, there's no need to be alarmed.

life is really unpredictable for me. it's been two months after my treatment, and seems like my health condition is ever-changing. i had quite difficult times coping with all these changes, but nothing is more difficult than the 2 months of hell period that i'd gone through during the treatment.

the only good improvement that i'd seen in myself over the last one week is, i finally can eat a little bit of spicy food. i can eat the green chilli which served with wanton noodles. this morning, i tried big red cut chilli and it's acceptable too. i'm really looking forward to trying out curry, one of the food i missed for months.

Recovery Report V

at the age of 65, one of my favourite actor Michael Douglas contracted throat cancer stage 4. i admired him for his optimistic, and i pray that he'll be able to pull through this toughest period of his life. if my cancer relapsed when i am 65, i will give up. not becos i think i'd live enough, but i hv 0 confidence i can pull through.

another week has passed. one significant improvement is , i'd finally regained > 80% of sweetness sensation. now my food taste so much better, all the soft drinks, all the fruit juices are giving me their original taste. life is full of sweetness.

i managed to jog 3km. my legs, my lungs r stronger than my mouth. whenever i run, i need to concentrate over my mouth (and throat), make sure i "keep" some saliva for hydration.

the ringing in my ears continue to get worse. it has become so loud that it irritates me very often.

another weird side effect which i just discovered not long ago, is a puffy neck and face i got. it gives pple an impression that i'd put on weight, but actually during this period of time, i'd gained only 1kg (now 64.5kg). i did a google and found out that the puffy neck and face is actually caused by damaged lymph nodes, it's not something very serious that i need to be alarmed.

Recovery Report IV

life is so unpredictable. things seems to turn better and worse in different aspects.

i considered myself to have resumed my regular runs, but non of the session lasted more than 2.5km. my legs can bring me further, but i'm just like a fish, after 2.5km, my throat and mouth become so dry that i could just vomit.

the ringing in the ears r getting worse than before and this could hv deteriorate into a psychological problem. my ears r now so sensitive to high frequency noise that i started to get confuse between noise from the surrounding and ringing in the ears. i started to get frustrated over all these "ringings", but there's nothing i can do.

for no reason, my mouth seems to become drier than before. the surrounding of my mouth started to stick to my gum, causing sores on the mouth. drinking more water does no help at all. due to this, i'm once again dependent on the oral spray (lubricant), carrying it along with me all the time, even during the run (how am i going to hold this and run a marathon?).

sounds demoralising? no, there r some goodies coming along with these. i'd regained more sense of taste. i think now i can get 10% of sweetness, 5% of saltiness and 15% of sourness. though quite pathetic, but my life is no longer tasteless! this contributes so much motivation to eat that i brought my wife to steamboat buffet last saturday. the feeling.... GREAT!

two days ago, i went back to ncc for medical review, the doctor did a scope into my nose and he comment that it's "healing" pretty well. i didn't ask what he meant by "pretty well", i guess at this point of time nobody dare to jump into conclusion (neither do i need any assumption).

overall, i'm still glad with what i am now. nothing can be worse than the last two weeks of treatment. i'm getting myself mentally prepared that some of these side effects will become part of my life until the day i die.

Recovery Report III

just when i thought i was doing pretty well, i had some setbacks last week. my first and only run lasted less than 1.5km. my knees were painful and i felt my steps floating in the air. the next day i had a slight fever. didn't know if it was caused by the run, but i stopped the run since then. as i said, it's not time to practice heroism. i know my limit.

the fever actually put me back on medication (some antibiotics), quite demoralising. my final blood test from the chemo doctor was pretty good except my white blood count was still a bit low. that ended my hopefully final visit to the chemo doctor (i won't be seeing Dr. DL anymore).

over this period of time, my taste bud improves a little bit. all the food r still tasteless, but the marigold peel fresh orange juice no longer taste (or smell?) like plastic, it taste more like orange juice now, except that it's neither sweet nor sour.

yesterday, i started my first day of work. it was really a mixture of good and bad feelings. after such a long break, it's difficult to get my engine started. u know, i now have the habit of taking afternoon nap. hahaha...

it's good to be working. a person who doesn't work feels left out by the society. there's no difference between weekdays and weekends, no difference between mid month and end-month. there's nothing to look forward to, and most importantly, i feel sick.

first day of work, the worst thing in the day happened during lunch time. i ordered a can of oldenlandia water and it taste like... beyond description. maybe you can try imagine the water you used to wash uncooked rice, then left in the open for a few days. 臭酸.

so, one more item added to the untouchable list.

Recovery Report II

it's been a week since my last post. my condition is very much improved compared to the previous week. i'd stopped all the unnecessary medicine prescribed to me, and finished all the necessary one (such as anti-biotic).

my burned neck has fully recovered except that the flesh is a little pinkish. i can finally go out without wearing jacket (i used to wear a jacket, zipped all the way up to conceal my horrible neck).

i can sleep, i can eat, i can walk. i sleep very well at night, no longer needed to wake up for hydration. i started to eat solid food, i can eat rice, eat bread, eat vegetables. i can do quite a bit of chewing. i no longer need to wait until my food to cool down to room temperature. i can eat lozenges, pepper, peppermint, even a little bit of chilli. when i eat in the public, i look just like anybody else.

i can go outside shopping the whole day. i can climb to the third storey (never try beyond that) without turning pale or feeling weak. i can do a great deal of walking which really tempted me to try running (i'm going to start this week).

so, am i fully recovered? NO.

my food still taste horrible. this is something which i really hate. when i eat in the public, i look just like anybody else. but no, actually i'm not. my food taste like shit. i dun enjoy my food at all. i still hate meal time. i dun like to eat. i wish i can go on without food. my wife has been trying to console me by commenting how tasteless was the food, how bad was the cooking. but i know it's different. no matter how tasteless was the food, it couldn't be worse than how i tasted the food.

pls, give me back my sense of taste...

Recovery Report I

it's been a week after my last day of treatment. the healing curve seems to slow down. there's no significant improvement over the past 3 days.

i'd totally stop the paracetamol, the morphine and the lidocaine (the anaesthetic gel). i still encounter some mild pain on the tongue, and severe pain in the throat, but they dun seems to affect too much on my eating. i've also started to eat slightly harder food. actually i believe i can eat solid food now, it's just that over such a long period of time, eating liquid food had weaken my teeth and jaws, making it very tough for the sudden switch now.

i planned to do some short walks this week. but i.m quite concern abt hydration. i'm now just like a fish. 15 minutes without water will leave my in anxiety. i prepared a small bottle to carry water with me during the walk, hopefully it works.

i'm still not quite able to talk due to the pain the throat. i hate it whenever my wife tried talking to me and expect an answer. most of the time i chose to ignore her completely.

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.