time jump

It's been a while since my last post. The Jan radio was part 1 of a 2 part session. I am now doing part 2.

I had f^%$g immigration things to do and it was one bad luck after another. First the required doco was vague, I missed the first deadline, I didn't provide form 1229 on the second deadline and I didn't check my email for a week and within that was another deadline. I was spewing. As such my kids visa application as refused. (AUD2400)

My second chance was through a tribunal. Sent the form within the time limit but it was incorrectly filled. Had to resend and needed seperate forms ($1400 each). The day before the deadline I disappeared and I woke up 3 days later. Apparently I had a seizure and was in an induced coma for 3 days 2 nights. What is the f^%$g chance of that happening the night before the tribunal form was due. I was being screwed by immigration, bleeding me financially dry and luck was just not on my side. God, you there?

The Cancer Council has a one off $500 relief to pay bills which I have half taken but on the other hand is an ambulance bill for $779. I just can't get ahead.

Maybe I should just stop the medication and treatment, its a painless death. I won't even notice it. When I had the seizure I had no idea of anything, I didn't feel pain, there was no indication of an onset of seizure, there was no dreams, no feeling of passage of time, there was nothing. I was in my room and in a blink of an eye I was in a bed in ICU with a hospital staff next to me and that damn breathing tube again down my throat. He said I had a seizure. I could see the clock on the wall, it was 12. I ask if it was day or night. It was noon. The next important question, what day. Friday. S$%t, I lost 3 days and missed the deadline, again.

The hospital staff then removed my breathing tube, the 3 headed neck IV (but replaced it with a hand one) and said I was going to the ward. The urine tube was staying though. I hate that as well. I wasn't wearing daipers, I wonder... The nurse did say I was bathed.

My wife was freaked out when she found me. Who wouldn't. She went to bed early and I know it was night the last thing I remember. She found me in the morning convulsing on the floor. I was placed in an induced coma so they can drug me and heal whatever was currently wrong. I had a sore tongue, cut bridge of nose, slight ache on my right eyebrow, slight ache on lip, head pain, double vision, slight lose of balance, feeling of weakness and I just want to sleep.

I must have fallen onto the drawers. There was blood there from where I cut my nose.

When I was discharged I saw the oncologist and he was aware of the news. I said I was coughing. He said it was normal when you have breathing tube for 3 days. Can I have a puffer? No. But you can have painkillers. Good enough. I must have bit my tongue. "Nothing I can do there, matter of time" he says. My head hurts and I have double vision."We better get an MRI ASAP." Ok. Did you take the dilantin (phenytoin)? Ehm...err... no. Why! I never had a seizure and I never thought it would last 3 days! Well now you learn you lesson. "Will I get another seizure?" "Don't know." "How long do I need to take the dilantin?" "At least 6 months." "What about the dexa?" "Stay on it for now."

lobotomy what you do to me

just saw the doc today after radio, donno y I was thinking of lobotomies, maybe I just want it all to go away. So I ask if I were to have a surgical solution whether it would be equivalent to a frontal lobotomy. The answer was yes, and the side effects may be drastic, that was y they did not consider it. Bagus, I jadi sayur.

So now it's time to play 'omen' by prodigy or 'I whip my hair' real LOUD and do some head bangin' . Keep cool and rock on!

I also asked for some conselling and happy (anti depression) pills. :D

doctor day

The day I wanted came, and pretty quickly due to the holidays.

The radiotherapy was quick around 5 minutes and the nurse's name was Helen. Then it was the doctors. She ask if there was any new symptoms. I said same as usual. Wasn't keen on making the most minute observations cos I'll end up doing additional tests. So I just basically said nothing new.

You getting headaches because the radiotherapy causes more swelling and we can give you .... more pills. Yeah but not that bad. Man I just turned down pills ... what's wrong with me!

What I wanted to know was "how many times can I undergo radiotherapy if the cancer regrows?". The answer "this is the last time". "What's the alternative treatment if it (and probably will) regrow?". "Nothing or surgery." "Great choice, again." If the growth is confined to the brain then surgery should be 'simple' but if the nasal has growth then I'm facing more nightmares.

I AM FUCKED!

However I am feeling better. Not as depressed as when I was facing the dreaded news from the doc last time. I managed to hook up with a friend or 2 on facebook. That's good. They put a smile on my face and I feel better.

day 1 round 3

29th Dec. I was back doing what I did last time. Scan the bar code and sit and wait. Got called and got on the slab but with the additional mouth guard. I even remembered the nurse's name Alana (I think, shit maybe I didn't remember).

It was quick. Didn't take 10 minutes on the slab.

It was Wednesday, doctor day but not on the first week. I had a question to ask the doctor but it could wait, it would not make any difference anyways.

line up for the merry go round

I get to try my new mask. Place cut, place cut, until finally a snug fit.

Next the ct scan with the mask so the target area can be identified. The mask keeps the head at exactly the same position so that the radiation points can just be plugged into the position control computer. Press of a button.

Again I get the contrast solution via the canula, I hate that thing. As usual I offered the biggest right hand elbow vein. And what happens, she misses. Now she'll have to fish around the smaller left hand vein. What to do. It ached.

I get a summary from the nurse then I was outta hear.

See ya 29th Dec for the treatment.

mould

7/12/10
Had to get scanned today for the face mask for the radio therapy. Nothing new, maybe third time lucky. This time there was a mouth guard to prevent the tongue from getting fried. Don't like the idea of losing taste again. But it does look like bondage tool. Laser scanned, mouth impressed, blood sample taken, done. See you next week for a CT test.

dispair

I still have not accepted my fate.

All I want to do is stay in my room and play mahjong solitaire to forget my problems.

safety valve

spoiler: just another 'luahan perasaan'

Yesterday my wife told me of a saucy piece of gossip concerning a known relative. At first I was amused that she would do such a naughty thing. It's good to hear juicy gossip. Today I feel sad that she would do such a thing as undressing in front of someone that she had thought of as the ideal person and offering herself. I ponder at this. My wife said that she always wanted a tall handsome guy but got a short round guy.

We all have dreams, and when that dream does not come true or we compromise, the yearning to have that void filled will always be there and when things are at it's lowest the dream becomes more real and a far better escape. An excuse for ones problem. Getting it must then be the solution. It makes us desperate and we try to force the dream to come true by blindly lunging at anything that comes close. Even a horny dog can hump a human leg. And that's when we fall, sometimes very hard.

If you have strong feelings for someone, take the chance, tell them. You won't lose what you never got and if the feeling is mutual then you gained. You must accept what you compromise otherwise it will return as poison.

one regret

spoiler: this is just mushy stuff don't bother. It's what I would like to say to the 'other girl'

If there's one one thing in my life I can change, she would be it.

I wish I could go back and say I have strong feelings for her. I'm cautious of saying love because my imagination has clouded my thoughts. Even though based on her actions I wonder what her feelings were. If she had not retire and get married I'm sure my feelings for her were growing. I could feel it swing. When she retired to get married a bell rang in my head but I was so blind it registered as a passing thought. I was feeling empty and depressed without her. Looking back I was an idiot. Don't know what you have until you lose it.

I remember her eyebrows, eyes, nose, soft lips and sweet smile. She would give me a smile in the mornings, she knows where I sit and its a glance and smile when she walks in and I do the same.

If she were to be available, I wonder what I would do. I know what I would like to do. Would I leave my wife? A marriage is an investment for the rest of ones life. It's not a fashion statement which can be changed each season. It's a deep and serious commitment. When one commits to marriage one is surrendering ones life to another. It's more than just a responsibility. And my wife entrusted her's to me. I cannot just brush it aside. But would you still get a sense of heaven on earth if you were able to spend even a week with the one you truely love?

Would you live with the one you love even it was for a moment or live forever without? Living is not enough. Love is blind but it fills us, influences our actions. Without it we are empty shells.

I feel like she was unfinished business. It's like a data transfer and the plug gets pulled out. I have things I want to say, to know. I want to know what her feelings were for me? Could we have managed to reach the altar? Would I be happy with her? I'm touched by the things she did, it was real. She was real.

I wonder where she is. I hope she is happy. If she is then I will be at peace. I felt like she was yearning for me and I feel responsible if she was not happy. I don't know if anybody can be unhappy with her.

I'd like to meet her one more time, just to see her face, her smile, her voice and her cheeky mannerisms. I..I dunno. I just miss her. Now I'm the one with the yearning. (Maybe it's just my imagination. What the hell am I thinking, am I thinking straight? I don't know anymore.) Well just in case, I'll write it down before the next radiotherapy stint. Not sure how much of my brain will be Kentucky fried after that. But I get another year to live.

I still have dreams, I still want things but it seems such a futile thing to do. Man Motorhead sounds good right now although Enrique - Hero is the song I would like to give.

I have always been a procrastinator, a pessimist and I hate it. Absolutely hate it. I wish I could change it. Why is it so hard to see things simply, without our imagination and fantasies getting in the way. I leave things too late until it's too late.

I wonder if what I remember is real or just my imagination.

It's just not fair that god set in motion the sequence of events the way that it is. Why did this girl get married before I got burnt by the shadow I was chasing. If it was the other way I would have quickly snapped this girl. I can't help wonder why god does what he does. If this is my test in life ... that cliff looks real good to me.

reflections

spoiler: I'm sorry but this post is depressing, skip if you must, I just want to get some relief by expressing my feelings. Maybe when the planets align my 'other girl' may just read this post and know that she was something to me.

After the doctor's appointment I was struck by sadness and grief. My mind says forget it, think positive and pull the 'don't give a shit' card but I also know that fighting the emotions does not always work. You have to go throught the course before you can cope. A cut will bleed and needs to be cleaned before it can heal. I too allowed myself the low so I can feel the high (assuming I don't go below 6ft).

Music is helping. Love songs for the grief (although it makes me more depressed) and heavy metal for the anger (arse kicker).

I am gripped by three things that I cannot shake and the tears appear when I think about.

The first is that my daughter 6 and a half years old and my son almost 3, they wont know me as a person. They will remember snippets of something, maybe images but nothing much. It will be as though I did not exist. They will see pictures of me but will only wonder who this old guy was. I in turn will not be able to see them grow up, guide them through life, be their friend, play with them, see them married and have kids. I read 'The Last Lecture', his strategy was to imprint his kids by doing activities that will leave a lasting impression. My resolution is to do the same. As for a last lecture, I really don't know, last thing on my mind.

The second is that my wife will be alone and I wont be able to support her, or comfort her, make her dreams come true. She'll have to face the world alone, sleep alone, be alone. It's hard to think about it.

The third is a girl. When I was working at SMK I had strong feelings for a girl. I liked her so much I had fantasies of her, and the emotional connection grew from those fantasies. Thinking back, in real life there was nothing actually there. It was just my imagination but love is so blind it stopped me from seeing the truth, that I was just chasing a shadow. She never showed me any signs of affection. Unfortunately I was blind to another girl that was showing me affections. I was beginning to be torn by these two girls but I had to follow through with my course of action so as not to waste the 'investment' I placed in it. I knew that the other girl was growing on me but I pushed it aside, biggest mistake in my life. Eventually I had an opportunity to take this girl out. I did and said what needs to be said. I got burnt. She already has a relationship with someone in the same office. I feel like they/she was playing like fool. Stupidifying me. When you chase shadows, you only get tired, theres nothing there. The pain of rejection is satan's best weapon, it can send you over the cliff. It was the hardest thing to get over. After what seems like ages I eventually got to compromise with the emotion of that day. I'm glad I went throught the whole course, I will never wonder and if I were to meet her there wouldn't be anything to say as I have said all that I needed to say. Unfortunately I lost the one that was right in front of me.

I still remember the other girl, longing sometimes, what could have been, would have been if only I had the light to make the shadows disappear. I was attracted to her the first day she came to the factory. I had to interview her and her sister. I was hooked. The interview was a sham, I was going to hire her regardless. I also made sure she was on my team. :) evil me. She would tidy my desk on some mornings, even put a flower there one time. I never dwell on regrets, Oprah said it's bad. You learn from it and move on otherwise its just a downer. I remember I couldn't wait to get to work just to see this girl. Exchange smiles and muck around all day. When she was absent I felt empty the whole day. Funny all this and I was blind to it. Biggest and only regret of my life this other girl. When I retired my supervisor suggested a promotion but the manager said all I did was flirt with the girls or was it with a girl. I always thought my anticks was unnoticed :) guess I was wrong.

Wherever she is I hope she is really happy with her life, although I do always wonder what if it was with me.

I will be terminated

I was soon going to see the oncologist. It's another 2 weeks.

Unfortunately I am starting to get headaches. I also had a migrain on 2 seperate days. I know what this means. Panadol/Paracetamol does nothing. Steroids is the only answer but I have run out. Fortunately I have an old prescription which was still valid. I popped those steroids like candy. After a day or two, I got relief.

On the 20th Nov I was down for an MRI. This will pick up anything new. I went there, same place but new robes, paper ones, with a big gap on your arse or crotch depending which way you wear it. Lucky I was wearing underwear that day. (What a thought huh.) I lay on the slab for almost an hour trying not to move, even swallow. Then the 'medicine' ie contrast solution ie gadolinium then more waiting then I'm out. Fortunately paid for by tax dollars, I get some use out of my tax :) Wonder what it will show.

Today (25/11/10) the appointment with the oncologist. At the reception I saw a big wad of scans. It looked familiar and yes it was mine. The nurse gives it to me. I new that there is only bad news in there but I had to know, I take out the medical report. The first line says it all "Findings: Interval deterioration with bilateral cranial fossa and skull base tumor recurrence with infiltration of the left frontal lobe...". So it has returned and grown quickly and spread, cute. The doctor says yeah. You did know it wasn't going to cure you? We do more radio if you want, up to you. I say there's no choice. He says "there's always a choice". What happens if I don't do radio? "It will grow and you die." Great choice! So I say yeah, let's do radio. He says well the last radio was about a year ago and you responded well. So if this goes the same you get another year. You know this exercise is just to slow it down. However you may not be so lucky with your sight this time and the area will certainly be more fried.

I was booked for a mould and I left. Funny most of the patients here are old and yet I won't live to half their age.

It was then clear to me that I was not ever going to beat this thing and 5 years seems such an impossible dream to live to. So this will be my demise bar being run over by a truck. Khamar born Jan 1968 Dead from cancer 201x.

I wish I can have another life, live at another place, be another person but you only get one deck, one game of mahjong solitaire. When you see that you are not going to successfully complete the game, too bad.

a new spring

It was spring a few weeks ago. During autumn and winter the leaves falls off some trees. So much that I think them to be dead. Fortunately I was proven wrong. The plum tree sprouts white flowers that make them look like snow. When the wind blows them and they fall, they look like snow falling. Such is the beauty of having seasons.

Soon I will need another scan. And another checkup. Hope it all goes well.

another pebble in the river

It's been a while since I have updated this blog. Nothing much has happened. Ramadhan. Otherwise nothing.

I'm in maintenance mode waiting for the tumour to reoccur, somewhere. My last appointment was yesterday and there was nothing to report. He asks if I want to live in ignorance or be aware of the problem. There's nothing much one can do other than more radiation. I say I want to know, I want to see it coming. The doc suggests a scan in two months, a week before the next appointment.

I'll have to wait and see.

a mouse in the house

My uncle came over the other day. He left the door opened but closed the fly door. Unfortunately there was a hole near the floor and would you know it a mouse came in. Uninvited. I heard him trying to scratch out in the middle of the night. I hate mice.

Reminds me of a cheap hotel I stayed in one time. I was sleeping and I felt mice, lots of mice, clammering over me in bed like I was some kind of amusement park. I was shocked.

Next day, rat poison. That fixed them and it will fix it now.

I opened the door and told the mouse to go 'be free'. But instead the little bugger ran further into the house. The opened door was right in front of him. Well you brought it upon yourself.

I was living in fear thinking that the mouse might crawl over me. I kept the bedroom door closed at all times. It was, after all my sanctuary.

A few nights later I could hear him in the kitchen coughing. And later he was in bad shape cos he was lying in the kitchen but not dead. He would crawl and hide when he saw me. Then a day or two later I got the courage to get a broom and pan and sweep him out.

He was still alive (kinda cute little thing), I told him he had his chance to go, why didn't he take it, the door was opened. The next day he was gone. Never to be seen, but alas there are heaps more on the roof.

groupies

hey I have followers. A cute chickie and a faceless man.

How about that, I never had groupies before.

some light in the tunnel

I know that I will not beat this cancer. It's just too tenacious. However the growth in my neck has shrunk, by a lot. I wonder if it is dead or just shrunk. Radiation has limited life, if it were to regrow in my head I wonder what treatment will be used next, if any.

Hope it does not regrow in my head ... for a long time. As for the rest of my body, it has not been radiated yet, go for it :)

frustration

this lack of taste and smell is SO frustrating. My throat is also sore now and gum feels swollen. Chewing and eating is a chore rather than a luxury.

Imagine not being able to smell or taste food. Just chewing some textured thing in your mouth without any taste. It's hell.

I tried to fry an egg the other day and left the pan to warm up and forgot about it. I was wondering why the kitchen looked foggy. THE PAN! I couldn't smell the smoke. Man it could've caught fire!

last day

It was my last radio day. I was glad. I say goodbye to the staff and ask if they will be throwing the mask away. She says yes. Is it radioactive. No. Can I have it? Yes.

Cool, I say I will paint it black and find a cape, and wear my underwear on the outside.

I also see the dietitian. I got weighed and thank god I did not lose weight. I was home. She suggests more supplements. Not a problem. All I can think about was the tube. :)

Next step, get my mold.I went to the radio department and asked for my mold. Yep you can have it, take a seat for a moment. I get my mold as a souvenir and I was outa here.

Till the next appointment.

black boy

Yes the radiation has now burnt my skin, it is black. You can clearly see the edges like someone spray painted a fake beard. Unfortunately that was not the only problem. Half my tongue is white! The radiation burnt my tongue and left cheek. My cheek feels tight, no elasticity, my teeth aches and I can't taste anything.

I can imagine a succulent KFC drumstick but I know I cannot smell it or even taste it (and there's nothing but cooking shows on tv).

I mention to the nurse that my skin was starting to itch and she gave me a tube of paraffin. I hate paraffin, it was like putting vesaline on your face. Sorbalene is better, It gets absorbed and does not feel oily.

I tell the oncologist about my tongue, he looked at it and say 'yeah how about that'. I should ask if he could've made a love heart shape, it would look more impressive. I planned to say the 'thrush" word but it never came out. I wonder why. So no mouth wash for me.

I see the dietitian and tell her about my tongue and the lack of taste. She say well you have to eat and keep your weight. Use a bicarb mouth wash, 1 teaspoon bicard into a cup and wash every 3 hours. You also lost weight. I suggest you increase your supplements. If you don't eat I will suggest a food pipe. ??? Huh, where? Either through the nose or punched through your stomach. I was shocked. That woke me up. No way I was gonna let that happen. I tell her yeah I will endeavour to eat more. I mention that I had stopped the steroids, what can I do, it was the only thing making me eat. I have no taste, I don't feel like eating, even when my stomach says it is hungry. She says that some patient was put on steroids to maintain their weight.

I knew the only thing that was gonna prevent me from the stomach tube was the steroids. So what the hell, I had some leftovers. I started popping them into my mouth again. I new it tasted really bitter but since I cannot taste anything I could rub it on my tongue and not feel anything.

radio must be working

The growth in my neck was actually shrinking but the newer one was more stubborn. It did not want to die so easily and it was fighting.

My skin feels a little funny, and I had pimples growing on my left cheek.