Brain Radiotherapy 3

Rainy morning. Another quiet day at NCI.
The left side of my head and neck still aches.
Didn't manage to think much about my cells. Did qigong while in the car to and back from NCI.

...just when you thought it's safe...

...for me to go back on the road...the seizures came back.

It just emphasised that, not only for my condition, it doesn't always pay to procrastinate. Do what you can do today, wait not till tomorrow. I did some stuff which I have wanted to do while being able to drive. I went to visit friends in PJ and KL. Drove on some tranquil country roads. Visited the Putrajaya's Pasar Ramadhan.

Do I want to follow the UK law that forbids people like me to drive for 2 years? I will see after 6 months. If things are getting better, and after consultations with my doctors, I will revisit my decision again.

Well, looks like I need to cope with public transportation, and the goodwill of friends & relatives for my transport needs...

Brain Radiotherapy 2

Went to NCI Cancer Hospital today for my 2nd session. Quiet in the hospital, only skeletal staff manning the critical centres on Saturday. Had a quick radiotherapy, and off I go again.

I am feeling ok while typing this. Yesterday I was quite nauseous and tired. Next session will be on Monday.

Thanks to friends who wished me well after reading about my latest blogs.

Brain Radiotherapy 1

Just came back from the first session.

I have less mental preparedness this time. It was quite a hurried decision, but an informed one. Previously in April I have mentally prepared my cells to accept the therapy to my C6 vetebrae; wishing my cancer cells a good after life. My cancer cells are like the Ribena advertisement cartoon character.

This time, I could only say a hurried "May you be well and happy" to all the cells before the 2-minute session started. Anyway, somehow I have taken it in stride, I even bought some kacang putih on sale outside the hospital, after the therapies! Cancer and its therapies is something I have to live with for now.

Had consultation with Dr Kana & Dr Selva. It is a sobering yet uplifting consultation. We had a few laughs, as usual when I meet them! I am to re-start my steroid and taper off slowly after the radiotherapies, also to start on Epilim 200; a medication to prevent seizures. This would be longterm medication.

They emphasised on abstainence from driving; Dr Kana explained that in UK, patients who are confirmed epiliptic (who had seizures) are legally forbidden from driving for 2 years. Looks like I have to adjust this for the long term. It had been fun after having driven the past few weeks...

Seizure again

I had another seizure yesterday evening while sleeping. According to my family, I do not recognise them during the seizure, just like the first time in May. This time I was also clutching the left sides of the back of my head and back of the neck in pain.

Earlier this week, I had dull ache at the muscle at the back of the neck (left side too), but I thought this was due to wrong sleeping position, and it gradually went away; now I think it could have been a mild attack and didnt realise it.

I felt ok now, except for the pain at the back of my head and back of the neck, both left side.

Called Dr Kana, and he asked me to do brain radiotherapy immediately. 5 sessions. Starting today, tomorrow, Monday, Wednesday and Friday.

My decision? I will do it. Finally after 6 months since the first discovery of the brain tumours.

Why? My concern was brain radiotherapy could affect my thinking and behaviour. But I guess I have to live day by day. What would have happened if the seizure came while I was driving? I actually drove to KL yesterday, and the seizure came when I was sleeping at home in the evening, after returning from KL.

If what what I am afraid of (behavioural changes) sets in, I will cross the bridge when I get to it.

Holding pattern

Went for a brain CT scan yesterday.

Situation is stable. The biggest lesion is the same size since the last scan in May. Some multiple lesions is not seen anymore. Two new lesions appeared.

Dr Kana said the new lesions are quite near the brain stem where it could affect my stability. He gave me some eye-hand coordination tests to check if my stability is affected. So far so good.

I am not worried nor upset, neither is Dr Kana. I felt that if the lesions can go away (or become so small its not detectable), so can the new ones. And vice versa too!

Did a lung x-ray too. The result also showed stability; same situation as was taken in China in late July.

Will go for another scan in 3 months time; January 2006.

...dawn has come...

Thursday 21 Oct. I came back from a relative's wake in a sombre mood. He succumbed to the effects of tumors on Wednesday.

And our PM's wife passed away on early Thursday morning. In a tribute to her, Martin Jalleh wrote in the letters column of malaysiakini.com these words of Indian poet Rabindranath Tagore: "Death is not extinguishing the light; it is putting out the lamp because dawn has come."

A moving tribute to her was also written by Soo Ewe Jin of The Star.

How the heavens wept ...

By Soo Ewe Jin

THE skies opened up over the nation’s capital this morning. And the heavens wept. The announcement that Datin Paduka Seri Endon Mahmood, beloved wife of our Prime Minister, had passed away at 7.55am after a long struggle with cancer, affected all of us. And we wept, too.

But the tears that came from cancer patients, cancer survivors, and their caregivers, were special. It was the passing away of a very extraordinary comrade-in-arms.

Endon’s most significant contributions was to put the Big C squarely into the national spotlight. By openly coming out with her own condition, she removed the aura of mystery and uncertainty often associated with cancer.

She did not see cancer patients as victims or survivors but as champions. “I am myself a cancer champ!” she declared.

She galvanised a nation into prayer, not only for her own well-being, but also for other cancer patients. She worked tirelessly for the cause, even when she was not well, and raised millions of ringgit to support the work of cancer groups.

Because of her passion and the very public display of her condition, others were not afraid to come out into the open. Malaysians had never before seen cancer patients taking to the catwalk, as they did in the highly successful fund-raising effort “Walk with Pride”, an idea by Endon after she attended a similar function in London.

Whenever she went abroad for treatment, the nation paused in prayer and wished her well. We respected her need for privacy and solitude and access to the best treatment that she could possibly get. And each time she returned, how we rejoiced to see her ever-smiling face hitting the front pages of our newspapers.

And in this period of time, we also saw the very public display of love and affection of the Prime Minister and his family whenever Endon’s condition was brought up. We saw how he shed tears when people of all faiths said their prayers for her.

And for all these very public displays, she must have known too that the rest of us, in our prayer time, in our houses of worship, in our care groups at home, were praying for her recovery.

In cancer wards everywhere, she was often the topic of discussion, and perhaps one of the most common remarks I have heard was, “She is such a brave woman. And she is so open about it”.

Yes, Endon touched more people than she probably realised. By coming out in the open, ordinary citizens afflicted by cancer saw hope. They felt a sense of revitalisation because they knew there would be more interest, more support, not just from the Government but also from the private sector.

As we applauded her efforts to not only raise funds, but more importantly to raise awareness of the Big C, we all knew she had set into motion a process that cannot, and must not be turned back.

The efforts of Endon must not be in vain. Those who responded so generously with their money to support cancer research must carry on because that would be her wish. Cancer affects everyone, rich or poor, whatever the race, religion or creed.

Endon knew that early detection is the key. The efforts of NGOs in the urban areas must go hand in hand with the efforts of those working in the rural areas. Companies must take the initiative to have programmes that will allow their staff to go for regular mammograms and pap smear tests.

This is but one of the legacies that Endon will pass on. As a cancer survivor, I weep today. But amidst my tears, I am reminded of Endon’s smile and I am filled with hope. As should all my comrades-in-arms and our families who have either gone through or are going through the journey.

I read once that cancer cannot cripple love, it cannot shatter hope, and it cannot corrode faith.

Endon showed Malaysians and the rest of the world that this is indeed so.

May God bless her soul.

Rest in Peace

One of my close relative passed away yesterday. He had surgery to remove cancerous tumour a few months back.

Today our Prime Minister's wife, Endon Mahmood, passed away after nearly 4 years coping with cancer.

May they rest in peace.

Fine Dining

Had lunch with friends of the Third World Network (http://www.twnside.org.sg). 8 TWN ladies and I had lunch at a vegetarian restaurant. Some of you may think this is a gross gender imbalance, but the gender make-up of this lunch party is just perfect for me ;)

In December 2004, I was on assignment for TWN in Buenos Aires when my first pericardium effusion occured. I am very grateful to TWN and the Malaysian Embassy for helping me during my hospitalisation there. Thank you.

Boon-style Qigong

I rejoined the Guolin-style qigong group today after an absence of nearly a month. I left the group to practice elsewhere in the Seremban Lake Gardens. I fled the other place because there are a lot of aedes mosquitoes lately.

I did my routine which I thought is the most perfect and beautiful Guolin ever executed. At the end of my practice, one of the sifu (teacher) approached me and asked what type of qigong am I doing? ...er...Guolin, I say....

She said..ahem...there are some adjustments needed on my routine. It turned out there are lots of adjustments to be made...and I thought the rest of them were doing it wrongly....hehe

Some I learnt from the other sifu, I think different masters would have tweaked Guolin according to what they thought is suitable. So there are some differences in style and way of execution.

Anyway, I gamely changed my routine to see how the Guolin is "supposed" to be done. Since the Seremban group I am joining is part of the national Guolin Association, I guess their style would be more "orthodox".

I will be joining the practice of my first master next month. He has once-a-month practice session. I will ask him about the style he taught and the "orthodox" one. It may turned out that I got it wrong in the first place! haha :)

Thanks

Thank you to my IIIEE alumni who wished me well after knowing about my current good condition. I am not out of the woods yet, but I hope I am on the right track. Thanks to a friend who blessed me with two books. And thank you to all who continue to support and encourage me. :)

It's the combination, stupid!

I am often amused when a producer would list how its product is better than its rival. This is often done by highlighting how its ingredients are of higher dose than the rival's. So more is better, it seems.

I believe it is often the synergistic combination of ingredients rather than its volume that create a great product. That is how great dishes are created...it's that secret balanced combination of ingredients that gives its special flavour; not adding more of its ingredients!

That's what I like about a report I read at Jon Barron's (http://www.jonbarron.org/newsletters/news051010.htm). Here's the part which caught my eye:

"The Additive Principle
Another point to keep in mind is that alternative therapies are not subtractive. They are "additive." An alternative treatment that would be dismissed as ineffective because testing showed it to be only 10% effective in isolation might nevertheless be an invaluable part of a comprehensive program that contained seven 10% components -- giving you a 70% chance of overcoming your cancer. But the medical establishment deliberately chooses not to test alternative therapies in this way -- thus condemning all seven components with the "quackery" label. So the only way you hear about effective alternatives is by word of mouth or anecdotal evidence."

To each his own...

I met a friend a few days ago. He had cancer, and was diagnosed in June. He didn't tell me because he don't want me to worry. He went thru chemotherapy and the cancer marker shows the cancer is gone. His doctor advised him to have a surgery to remove whatever remnants of tumor in his body.

His cancer was at an advanced stage. But looking at him now, you would hardly notice he was ill. He has rosy cheeks, weight normal and generally active.

He said that he was nauseous from the chemo treatment but did not throw up. He refused to give in to the nauseum. He even went to work after his chemo sessions.

He avoids red meat and barbequed meat.He eats veges, eggs and fish.

I have heard the various dietery regimes of cancer patients who are coping well. Some take meat, some don't. Some avoid conventional treatment like chemo and radiotherapy, some embraced it. Some did qigong, some don't. Some go for Chinese medication, some look the other way.

To each his own I say. Find the combination best suits you!

Let the words flow...

In Italy for 30 years under Borgias they had warfare, terror, murder and bloodshed but they produced Michelangelo, Leonardo da Vinci and the Renaissance. In Switzerland, they had brotherly love; they had 500 years of democracy and peace and what did that produce? The cuckoo clock.

Orson Welles (1915 - 1985), The Third Man, 1949

No offense to Switzerland and her people...but I use the quote to exemplify my postings on this blog. In the earlier part of this blog between March and June, when I am having a lot of medical emergencies, the words just flowed. Faced with suffering and death, my creative juice gushes freely.

Now, leading a relatively mundane existence, my postings are getting infrequent. So, people...less news is good news! ;)

Loverboy

Listen up, ladies...I am a lover, ain't a fighter...

They are many ways to tackle cancer. Some treat it as a war with the cancer cells; a fight to the finish! I can't bring myself up to do that. Somehow I feel my cancer cells are suffering too. I prefer to live in harmony with them. If they find my body a hostile environment to them; that I am irritatingly too kind to them and they want to go away and leave me, I will set them free. :)

I like the story Dr Phang Cheng Kar compiled in his book "Don't worry, be healthy". The summary of story:

There was once a demon who fed on the anger of others. As his feeding ground was the human world, there was no lack of food for him. It is so easy to provoke people and countries to quarrel and fight, so the demon grew fat and happy.

One day, feeling bored, a thought came to him;" Hey, what if I do this to the gods?" So he chose to provoke anger in the realms of the gods. He went to sit on the throne of the Sakka, the King of Gods during the king's absence. The other gods saw this and became angry and tried to chase the demon away. The more hostile the gods become, the bigger it grew in size, strength and power. As he grew bigger, the gods became weaker...

Then Sakka came home to his castle and throne. He saw the demon, and instead of getting angry, Sakka said,"Welcome, friend! May I offer you the drink of hospitality?" Sakka continues to be friendly, and the demon rapidly shrank to a diminutive size and finally disappear in the face of such goodwill!

Dr Phang, at the end of the story, asked if illness like cancer behave like the demon; the more hostile and wish to drive them away, the worse they would be. The more we welcome them with compassion and let go, they will disappear and let go of us. It does not mean we don't seek treatment; it means we try our best and leave the rest with nature.

I think the strategy of tackling a disease is best chosen based on the personality of the person. Me? I am a lover, ain't a fighter..hehe ;)

Would I push it?

"Since I was dying, why waste money? Better to keep it for the children’s education," said Madam Tum, a cancer patient. She was featured in my blog titled "At the NCI Cancer Hospital".

I am also thinking along similar lines. I am taking Iressa, a very expensive medication which I attributed for my currently good condition. I am thinking of tapering off and eventually going off it.

Why am I dicing with fate?

Thinking along the same line as the Madam Tum, although I don't have children, would the money be better spent elsewhere, for the healthier? I am not afraid of death, it's the process of dying that I am apprehensive about. The pain and suffering I had in May is not something I want replayed!

I am most happy to fully use the time Iressa has given me to put my worldly affairs in order. Do I have the luxury to ask how long would I want to be dependent on Iressa? Would the combination of other therapies like qigong and Chinese medication hold the cancer cells at bay?

I am currently taking Iressa every other day and it seems to be a good combination; I am getting stronger everyday. Would I want to push it to twice a week, then once a week and finally going off it?

Pasar Ramadhan

What I enjoy most about Ramadhan (http://en.wikipedia.org/wiki/Sawm) is the Pasar Ramadhan or the Ramadhan Bazaar. Before cancer (BC) it is one of my favourite Ramadhan month afternoon activity. I would prowl the Pasar Ramadhans in PJ to enjoy the food that is on sale.

I think the best pasar Ramadhans visits are those located in major urban areas and university towns. This is because the population of these areas usually come from all over Malaysia. So you have an array of incredible culinary delights prepared by out-of-towners to cater for their fellow out-of-towners yearning for hometown fare.

With my current dietary restriction, I can only eat the popia and nasi kerabu(minus the ikan goreng & budu)...so I have to give those sinfully delicious murtabak, roti john, nasi beriani, ayam percik & satay a miss....haha

Last week, I have visited the Pasar Ramadhan of Kelana Jaya, Serdang and Seremban . The Putrajaya's Pasar Ramadhan will be next on my list :)

They hurt too!

"They can see. They can count and talk to each other. They react to the slightest touch and to estimate time with extraordinary precision. They are constantly on the move; developing, fighting, avoiding or exploiting predators or neighbours, struggling to find food, increase their territory, to reproduce themselves."
David Attenborough in The Private life of plants

Most probably you would not attribute the description above to plants. Yes, we see them as benign, even pitiful because of their passivity and immobility. Yet they go thru life in the same way as us and other more agile life. The difference is of time. Plants live in a different time-scale from ours. Time-lapse camera would reveal the movements plants go thru in their daily lives. Attenborough describes the ferocity of a strangler fig squeezing the life from its victim, revealed in the speeded-up time lapse film.

Why am I telling you this?

Many of my vegetarian friends would ask me to become one so that I would not kill "living" beings. Being a vegetarian is a benign way of life. The less harm I wrought upon "living" beings, the less bad karma I bring upon myself. I feel uneasy that somehow the advise sounds like they are pushing their beliefs on me.

By "living beings" they usually mean animal life; cows, chicken, fish, ducks, pig - the animals we usually use in our diet. Seldom would we consider plants as "living beings" capable of fear and terror as we pull them out from the soil!

Pictures of deers gazing peacefully, or of cows munching nonchalently may seem to give herbivores (and vegetarianism) harmless picture of existence. I wonder what those plant life which are being torn apart and eaten think of this!

Vegetarianism is often attributed to Buddha's teachings. But Buddha himself never made vegetarianism compulsary. He takes whatever food the people gave him and his followers.

So be a vegetarian if you must; for health or ethical purposes. But you are still taking life away when you eat plants. That's the natural order of things. The lion won't sit quietly beside a lamb contrary to what we see on some religious paintings. There is nothing to be ashamed of eating meat when it is afterall a condensed form of energy transfer for us to continue living.

I began my healing process by being a vegan; avoiding even eggs. Later I took eggs. Then some Chinese medication contain animal parts. Finally I started to eat fish a few days ago. I still avoid meat because I suspect the farm animals are being fed or injected with growth hormones, antibiotics and other chemicals which eventually passes on to us. I also felt sorry for the limited freedom of farm animals while waiting to be slaughtered (so-called "happy" free range animals are happy until the moment they are slaughtered...haha). Fish from the ocean may also be contaminated with man-made chemicals but I can live with that.

So I eat to sustain myself. I shall not deprive my body from the food it need. I sustain myself so that I can do good and work towards the ultimate goal of which I believe in. I respect the involuntrary supreme sacrifice of the living beings for my sustenance. I also understand that when I die, other living beings will also feed on my body for their sustenance.

If you are interested in the debate whether man is a natural vegetarian or an omnivore, do visit this page: http://ivu.org/history/early/index.html

Driving

Friday 7 Oct. Drove to PJ all on my own!

Had lunch at Jannie's, met Kian Foh and went to my PJ house to pick up some stuff, and then had a consultation with Dr Yong. Everything went as planned ;)

Sunday 9 Oct. Drove again to PJ for a seminar...yeah..just like old times. Later made a detour to Serdang to visit the Pasar Ramadhan there. :)