...thank you for the music...

I found that my blogs lately are full of gloom and doom. But that's the reality of my condition. Yet, it is only a part of the whole reality.

I have a lot to be thankful for. And I have neglected to reflect on what is well and good. Things that, not only me, but most of us take for granted and don't give any thoughts to.

Although I am not in the best of health, but I got so much blessings. So let's give thanks and credit where it is due.

First; I still wake up in the morning...haha ;) I can hear the birds chirping. Lots of chirping because of my well-growing vegetable garden, lawn and trees all around. I can hear my neighbour's dogs greeting the mornings with barks.

Second; I can still get out of my bed with my own power :) Although some days it take some effort because of the aches on my back and neck. But heck, I can still get up and go to the bathroom to ...ahem..preen myself ;)

Third; after making myself smell good and visually presentable, I am able to walk to get my breakfast. I am able to pick up the food and munch, swallow and forget about them as they get digested to bring nutrients to my body.

...and so on and on...you get the picture...the teeny weeny things that normally we don't notice as we go thru the motion, but when there is an ailment...oh boy...do u notice them! You will notice that things we take for granted are such wonderful gifts!

And of course, giving thanks to the external circumstances. Your family and friends who stick by you. For me, I may not be able to express my thanks all the time, but I say Thank You for the time and effort you given me. The gestures of which you may think is small, but meant a lot to me...a lot..a lot...a lot.

I think in the balancesheet of life, mine is still very much in the black with a healthy surplus! :) Now I should invest those surplus in things that would multiply them. Things like joy, gratitude and positive thinking so that the dividends benefit me and also those around me. Don't be miserly and stash those healthy surpluses in places so safe that even you would forget about them! Share them! Let them multiply!!!

Today is Friday 27 Jan. By the end of today, Malaysians can look forward to a long special holidays next week as we greet the Chinese Lunar New Year on Sunday and Monday, and then celebrate Awal Muharam (the start of the Muslim calendar) on Tuesday. So I want to leave this blog for a few days on an uplifting and inspirational note.

Come...Join me in rejoicing in the tender small mercies we hardly ever notice. Join me in giving gratitude for things that goes well. Join me in giving thanks that ,whatever that is not going our way, at least we are still capable of making the best of things and rectifying them. Let's appreciate the ups and downs because they make life whole.

And for those who are driving back to their hometowns for the festivities. I wish you a safe journey home and back. Drive carefully and see you again... :)

It's the same

My health status is slightly better. It's up and down actually. Yesterday I felt the best so far after the last radiotherapy session. The discomfort at the right hip is gone. Tiredness still there. Insomnia comes on and off. Breathlessness is still there.

A year ago

We commemorated my dad's first death anniversary last Saturday, according to the Chinese lunar calendar. It should have been 7 Feb according to the Gregorian calendar. I still remember that early Monday morning, 2 days before 2005's Chinese New Year.

Received an urgent call from my sis that dad's been hospitalised in the early hours of 7 Feb. I rushed back from KL to Seremban, managed to just reach Seremban Hospital's lift which will bring me to the 5th floor when another call came from my sister that my dad's gone. Just seconds away...

And then my pericardium effusion came back on 17th Feb. It's quite a coincidence that my grandma passed away on the 26th Dec, my dad on 7th Feb and I was hospitalised on the 18th Feb. And the rest is history...

Dreading the night

These few nights has been lousy. Not sure why, but insomnia accompanied the nights. And there are general discomfort thru the night. It's not pain, but discomfort at the back and the hip area. I tried to avoid painkillers because it's not pain, but it seems pain killers do help.

I wake up intermittently throughout the night, not knowing when I can sleep again. So now I usually get up late in the morning around 9-10am.

It's done...

So it's done. Today is the last of the 5 hip radio. From April 2005 till today I had 3 radiotherapies of 5 sessions each; to the C6 vertebra, whole brain and the just concluded hip. The last two hip radio saw me holding my genitals with my left hand to avoid the rays. This seems more effective than the earlier 3 sessions where a dressing held them back. Anyway, so passed the indignity...hehe :)

Coney Dog

After that 3rd radio session, had two Coneydogs from A&W. I am just following Ms K's resolution for 2006; especially the one about eating happily (see no. 2 & 3). The first coneydog satisfied my craving, the 2nd is just to fill my tummy. After dreaming about it the last few days, and after eating them, they ain't that great after all...haha ;) But it was great while it lasted :)

Cancer as just a nuisance

Had my third radio session today. Wanted to ask if I can take 'leave' for a few days from the therapy because I am feeling tired nowadays. The bed always succeed in beckoning me to lie upon it... :)

Saw both Dr Selva and Dr Kana. Dr Selva assured me my tiredness is not from the radiotherapy; most probably it may come from Iressa. That's new because I have taken Iressa before and felt fine. Anyway, decided to finish the last two session with Dr Selva's assurance. Just tomorrow and Friday.

I also felt energetic after a chummy chat with both the good doctors. We talked about life, my blog, and about both doctors' aspirations for themselves and NCI. I am very happy to know the underlying healing philosophy of both doctors; will augur well for NCI as THE centre for cancer treatment in the country.

We also talked about my blog on "Schemers, scammers and swindlers". Both of them told me about poor patients who got swindled by weird useless treatments and products, and they have full empathy with these patients and understand that when we are desperate, we grasp at anything that promises the magic bullet. We also talked about the future cancer treatment which will render cancer as just a nuisance like diabetic or heart disease.

What I meant nuisance is relative to the current voodoo notion that cancer means terminal. Compared to the current prognosis, how exciting it is if cancer becomes just an irritant (a major one for sure!) rather than one that puts patients into horrible turmoil and desperately running around seeking cures. Both doctors talked about the new therapies, drugs and technologies that promised to be more gentle and targetted. Taming of the naughty cancer cells.

Hopefully this will push cancer into the realm of diseases which although may be incurable, but is just a nuisance which the patients can live with, and carry on with their lives with dignity. Currently, there are a few drugs to manage my non-small cell lung cancer, but the cost is prohibitive. I can only look to the future where patients will enjoy a more tolerable cost structure.

Hip Radio

Hip Radio...sounds like a new radio station playing hiphop music :)

Well, yesterday I did the first of 5 radiotherapy sessions to my right hip. The area are the right ischium, ilium and femur region where islands of lesions were detected; which is of no surprise because they were there since April 2005.

First had a chest x-ray to see the status of the effusion. The radiologist reported the effusion has increased slightly but Dr Kana and Dr Selva thinks it has stabilised considering I first reported the effusion a month ago.

Then started the long process of preparing me for the radiotherapy. First was another hip xray to determine again the location of the therapy. Then after Dr Selva has confirmed the exact location for the radiotherapy technicians, the treatment proceeded with great relief from me. One indignity I suffered was to have my genitals pushed aside to avoid the radio-rays. They were pushed towards the left side and held in place by tapes and dressing. :P

In total I was at NCI for nearly 3 hours. The extreme cold of NCI new wing doesn't help either.
Always wondered why buildings in Malaysia want to emulate autumn conditio; surely there is a comfortable temperature for human, maybe 25C?

I remembered reading that extreme cold condition in an enclosed environment lowers the immune system of the patient. Some people told me that such low temperature is needed to control patogen, well...patients are not exactly thrilled either! I also remember reading about hospitals of old which uses natural ventilation. Such system still exist in the Seremban Hospital which is airy and naturally comfortable. Diseases bought about by the connected air conditioned vents and channels are avoided too.

Schemers, scammers and swindlers

The one thing to watch out for when you are affliated with a disease like cancer are schemers, scammers and swindlers. Low-life bottom-feeding scum of humanity who prey on desperate patients like us.

I am not talking about well-meaning friends and relatives who dispenses with dubious medical advise they heard or maybe even seen. Forgive them because their intention is good, it's up to us to evaluate their advise.

I am talking about people who see us as easy prey, and try to sell their product or technique. These product are based on hearsay or mere testimonials. If you read their product description, they are light on facts and heavy on rhetoric. And some don't even list their ingredients, or the design of their brochure is of such poor quality it's not even worth wasting energy to recycle them. Normally, you would instantly be suspicious, but if you are a desperate cancer patient grasping on any straw, they are good enough.

I have heard of stories where such swindlers would push their product on the patient; wiping out nearly their life savings, with no quarantee of cure except what's in their low quality or even glossy brouchure. I even heard of a story where the father of a patient went looking for the salesperson with a shotgun when his son died after spending collosal sums of money of the product.

I myself have fallen on such claims. I have spent more than RM40,000 (nearly USD 11,000) on products of a certain company. Those were the earlier days when I lying on the bed, frantically searching for the magic bullet. I know the person selling them meant well, heck, she is a family friend. But there were no evaluation of my condition while I was pouring ringgits down my throat, and she would have been happily continue to sell it until we scrap bottom financially.

I knew another seller who don't even know what are the function of several ingredients in his product. Yes, he knows the function of the main ingredient, but he has a product which has this main active ingredient in combination with other ingredients. I asked what are the function of these "plus+plus" ingredients and interaction with the main one, he didn't know. OK, fine, but at least he should take the initiative to find out; it's for his own good too to better sell his product. But nooooo....he could not answer me even after the 3rd time. And he has the temerity to ask me to read their product booklet!

Shit! I told one of his partner that if you buy a car, and you ask the car salesman what is the function of a particular button in the car, and the salesman answered," Eh, I don't know, why don't you read the manual?", surely you would ask this car salesman to go to hell. Anyway, this product salesman is more interested in his product's business plan, he even took the time to explain to me the business plan(!), rather than understanding more about his own product and explaining it to me. His partner is not good either, in the end he also gave me his product booklet to read! He cited that both of them are too tired at the end of the day to really read more about their product. I was flabbergasted....Avoid at all cost....

Members of the noble profession also do not escape from such greediness. I remember the first oncologist I consulted in a private hospital south of Seremban. Initially he offered Iressa for a certain sum. Eventually I didnt consult him because I prefer NCI which is much nearer to my home and the doctors there have more emphaty.

Anyway, in my quest to find Iressa at a cheaper cost, I went back to see this Dr C and asked if he can give me the price he quoted earlier, which is cheaper than other places. He immediately raised the price by RM500. Good thing I wasn't present at that time, because it was my sister who went to see him the 2nd time; I would have given him a big piece of my mind about his mercenary attitude. Another cancer counsellor told me she had heard lots of horror stories about this Dr C. I first blogged about him here in April 2004.

So cancer or other so-called terminal disease patients. Your healing journey is an expensive one, a long one, it's could be a marathon voyage. No matter how desperate you are; judge any claims calmly, preferably with friends or relatives who have experience and of course with a physician whom you can trust and talk to. Why sell houses or bust your life savings on doubtful remedies which may have cheaper substitute if bought from pharmacies.

There. That's my rant.

Pushing the envelope

The last few days, other than coping with the new pain, I have completed a work project. I am happy with that. Too bad I have to turn down another project which I have promised because of the new pain. I told my friend while I was at NCI that I can't do the work. Too bad, but there will others.

I am quite happy with yesterday. I forego the painkillers and the pain did not come for the whole day. I didn't sleep well last night though, not because of pain but because of bloating and burping from wrong food. I hardly remember wanting to take Milo even before cancer, but last night I had a urge to take this sugar-laden stuff. Suddenly the idea of a warm glass of Milo was just irrestible! I took a glass and instantly it doesn't agree with my stomach; bad bloating and gas.

Serves me right ;)

Radiotherapy again

The x-ray I took last Friday shows islands of lesion at the bone area of the hips. Nothing new, the April 2005 bone scan showed metastasis to that area. Faxed the x-ray to Dr Selva. He asked to me see him today.

Met Dr Kana today as Dr Selva is not free to see me. Dr Selva had recommended radiotherapy to that area. Dr Kana pointed out that the radiotherapy need to be done to prevent pathological fracture to that weight-bearing part of the hip bone. If it fractures, things will bet really complicated.

So come next Monday, it will be my third radiotherapy on a part of my body. The painkiller is holding the pain at bay for the moment, allowing me to function relatively well.

Voodoo death from cancer

Cancer death from voodoo; first came across this reference in one of Dr Chris Teo's book.

Indeed, when we hear of someone had been affliated with cancer, we immediately think that death is imminenet; not "if" but "when". Cancer patients are also very sensitive about any changes in their body.

Patients of broken bones, flu or other "known" non-terminal diseases, are confident that they are on the way to recovery even if their health dips during their healing journey. But for many cancer patients, any changes in their body; be it a small one like insomnia, a relatively big one like pain or a major one like the discovery of a new tumour, the patient will most probably goes into a depression, thinking that it's the beginning of the end...again!

Cancer patients are sensitive people, jumping whenever there is a change in their health status. Why did this come about? I agree with Dr Teo that a voodoo spell has been cast on society; cancer means death!!!

But is this so? For a majority of cases, it may be so, but healing is such a mysterious event. I read many cases where patients of similar stage respond differently.

We really have to cast off this voodoo spell; and embrace the notion that cancer is not an imminent death sentence. This would really lift a major source of stress from the healing journey.

OK, I know this is easier said than done, when you see the fear and pity in the eyes of people surrounding you; friends and relatives. They too are victim of the voodoo spell.

Today, I had a excruciating pain in my right leg. It is so painful I can't sleep last night. It developed suddenly last night and continues today. I was hobbling and was on a wheelchair this morning at NCI. And the ride to and from NCI was the longest journey in my life at the pain stabs me during the whole route. I was moaning in pain most of the time.

I am able to blog now because the doctor prescribed a powerful painkiller which I took when I reached home.

But it is really difficult to talk about "mind over matter" when such throbbing pain assaults you. I tried, before the hospital, to use imagery to overcome the pain, I am afraid my disipline fails me. Can't keep up the concentration with the pain banging my consciousness.

Of course, I also begin to think that this is a sign that Messrs Death is beckoning and I better wrap up whatever loose ends... :)

I will need to get an x-ray done tomorrow and the NCI oncologists will presribe a strategy then. For now it's painkillers and Iressa to maintain my sanity and dignity.

Depending on my condition, my blog may be idle for awhile while I overcome this new valley, and cast off the voodoo spell....

My naughty cancer cells

Been a few weeks since the pain and effusion came back. The back pain comes on and off, sometimes indiscernible. sometimes sharp. The effusion has stabilised; the breathlessness is not getting worse. New aches at the base of the left side of the head, and aches on the left leg.

I have not gone for a check-up with NCI, will do so next week. Will go to see Dr Pang this week.

I have also been slacking off my qigung and reiki. When the pain comes, I lie down to rest. So most of the time now I lie on my bed. My concentration is very bad these few days, thoughts intrude and I will miss the qigung steps. So I turned it around to use the thoughts as imagery. I direct the imageries to be positive ones where I meet my friends and colleagues overseas in the future. We all so glad to see each other. I hope my cells will see this images and strive towards the healthy me.

Meanwhile, I will try to regain my qigung concentration.

To die suddenly

The last few days I read about the sudden death of my contemporaries, although we don't know each other. But I can identify with them; the 1960s generation.

One was a high-flying corporate figure. Died on-site in a freak construction accident. The other was a well-loved politician who died suddenly after collapsing in a meeting.

No goodbyes. No warning.

Many would say their death was untimely. When was a death "timely"? I guess timely is when the person in very old (would 90s qualify?), has his or her share of good and bad life, sickly for a long time, or he admits and people acknowledge that he or she has contributed to the world and reaped what life got to offer.

I thought of my condition. We all die one day. When I was healthy, death is something we can casually plan for (or not); no urgency. The future stretches for the long term. Now with some of my cells turned into naughty cancer cells, perspectives change.

Cancer patient like me were given a gift. The gift of able to acknowledge our immortality. Friends and relatives are given an opportunity to prepare themselves. I am not saying all cancer cases are terminal. To greet a cancer diagnosis as the end is like a voodoo spell put on most of us. This is a blog topic later! Now I would like to delve on the gift.

Yes, the gift. I do think of death everyday. The gift is also a time period. I was given a window to prepare to exit the world. How well I prepare is how well I use my time.

Nobody can predict how we will die. But there are some scenarios for my death...hehe. But of course, I may not die from cancer or its complications, but in many other ways. I remember asking Dr Selva and Dr Kana how do lung cancer patients die. Dr Kana gave me some scenarios, and Dr Selva said I could also die in a car accident. :)

I am sure many of us wonder how we will die; peacefully? fitfully? joyfully? alone? suddenly? gladly?

Healthy eating

Got this joke. Author unknown. Took the liberty to edit it a bit to add some Malaysian flavour ;)

And God populated the earth with broccoli, sawi, siew pak choy, cauliflower and spinach and green and yellow vegetables of all kinds, so Man and Woman would live long and healthy lives.

And Satan created McDonald's, and McDonald's brought forth the $3.20 double-cheeseburger, and Satan said to Man, "You want fries with that?", and Man said, "Super size them."

And Man gained pounds.

And God created the healthful yogurt, that Woman might keep her figure that Man found so fair.

And Satan froze the yogurt, and he brought forth chocolate, and brightly colored sprinkle candy to put on the yogurt.

And Woman gained pounds.

And God said, "Try my crispy fresh salad & ulam."

And Satan brought forth creamy dressings, bacon bits, and shredded cheese, and there was ice cream for dessert.

And Woman gained pounds.

And God said, "I have sent you heart-healthy vegetables and olive oil with which to cook them."

And Satan brought forth satay and hokkien mee.

And Man gained pounds, and his cholesterol went through the roof.

And God brought forth running shoes, and Man resolved to lose those extra pounds.

And Satan brought forth cable TV with remote control so Man would not have to work to change channels.

And Man gained pounds.

And God said, "You're running up the score, Devil."

And God brought forth the potato, a vegetable naturally low in fat and brimming with nutrition.

And Satan peeled off the healthful skin and sliced the starchy centre into chips and deep-fat fried them. He created sour cream dip also, and Man clutched his remote control, and ate the potato chips swaddled in cholesterol.

And Satan saw that and said, "It is good."

And Man went into cardiac arrest.

And God sighed and created quadruple bypass surgery...

And Satan created private health insurance....

Yvonne Foong

I received an email today about Yvonne Foong. Here is an excerpt from that email, and links to her sites.

I came across Yvonne Foong's weblog (www.yvonnefoong.com) a couple of months ago. Oh well, the blogosphere is not as HUGE as we all think it is. And I am truly amazed at what a girl her age (and with her kind of disease) could do and have achieved. For a start, she has a rare and complicating disease called Neurofibromatosis Type II (learn more about NF2 at www.yvonnefoong.com/neurofibromatosis ). And she has also started the first Malaysian website on NF2 to create awareness about the incurable disease ( www.nfmalaysia.org).