Breastcancerandme

I started this blog because one of my friends asked me to. I guess it was an easy way for people to stay in touch, and to be a suport through this journey called cancer. I have found though, that people are taking away different things from this blog and now, I see it more as an opportunity to share thoughts of life, and to reach out to others, and not just cancer patients and survivors.

Thursday, August 31, 2006

I have been eating really well lately. My mother has excelled herself with adapting some of my childhood favourites to macrobiotic standards. For example, a fish moolie, sans salt, chilli and coconut cream but using instead organic, unsweetened soya milk. It was surprisingly good and I did not miss the salt at all.

Last night was a major culinary triumph for her - mee rebus, macrobiotic style. For those who are not mee rebus cognoscenti, this is a noodle dish with a gravy made from sweet potato and dried shrimp (or beef stock,depending on which ethnic group's mee rebus we are talking about). My mother uses a recipe handed down from my grandmother. No specific portions of anything, just 'a handful of this, a soupcon of that, sweet pototo - aga-aga, lah...'. Totally a family secret recipe. Strictly speaking, shrimp is not mainstream macrobiotic, but anchovies are, which is what we put in instead of shrimp.

If you use wholewheat noodles, this is totally macrobiotic, and if you also have a boiled salad starter, which we had, it is macrobiotic in food proportions too. The result was surprisingly fantastic!

When I tell my friends (foodies all)I am macrobiotic, they cringe, and feel sorry for me. They think I now lead a life of deprivation. Although my mother cooks the stuff, she refuses to eat it - hats off to her for at least cooking it! But you know, I am totally absorbed with trying new recipes, making substitutions and coming up with meals that support my need for widely varied meals in any single week. In my family, we are used to eating a variety of cuisines in any one week - Western, Malay, Nonya, Chinese, Thai, Middle Eastern, Greek, - you name it. Traditional macriobotic cuisine, in the sparse Japanese Zen tradition, is an initial shocker. But I am discovering that the joy of macrobiotic cooking is taking the principles and making them into a cuisine that is totally unique to you.

And that is the heart of the macrobiotic philosophy - flexibility, and enjoyment of food (and life). This is yet another journey of discovery that I am beginning to enjoy. And this is totally compatible with the lifestyle and philosophy that cancer survivors find themselves having to inculcate.

So, for lunch it will be - oil-less fried brown rice with chickpeas, stinky bean (petai to those have been initiated!), daun kedok (sp? - a herb lost to HDB development, but still alive in select back gardens), and green veggies. It is going to be fabulous.

Oh, and in case I forgot to mention it, I eat extremely well, and am STILL losing weight. 18 lbs and counting! What more could a girl ask?

Wednesday, August 30, 2006

Well, today I am living with the consequences of taking control of my life - my brother is not speaking to me. I wonder if I should get in touch to explain that when I said not to come round any more, I meant - to jog. Then again, I think to myself, why should I? I understand that forcing me to exercise and jog to his standards is part of his therapy, because needs to feel he is helping. But it ain't therapeutic to me, and I am the one with cancer.

Right now, I cannot support anyone else's emotional issues. Someone (a breast cancer survivor) told me when I was first diagnosed that I had to be selfish, then I should not over-exert myself just because other people need to feel that they are 'helping'. This is what I am doing now. Perhaps I could have been more tactful. But then again, perhaps other people could recognise that these are less than usual circs. (I know, I know, I do it to myself because I insist that I am normal and ok -which is true...for the most part).

For the first time, I need to take care of myself, and not everyone around me. I cannot fix everyone else's problems (which, being type A, I think I can!), such as my mother's ongoing battle with the TV/DVD/VCR remote control(s) and all manner of electronic devices, including the lights in the house(cannot read what's on the buttons, cannot remember what they all mean, ergo the TV is on the blink, lights are not working). Ditto for the mobile phone - for 'no-one is phoning me back' read: I have done something wrong but would rather blame the phone and everyone else).

Arrgh. Help!!! No wonder in the more developed West, all cancer patients are automatically referred to a shrink. Roll on the day when that happens here as well. Meanwhile, I will continue to focus on me and use my favourite coping mechanism - stick head in terra firma - when I have to. The meditation mantra du jour is: z-o-n-e o-u-t...

Sunday, August 27, 2006

Today, a stranger smiled warmly at me in the supermarket, and it almost brought me to tears. She had looked at my hat, realised that I was undergoing treatment for cancer (nothing hides the baldness) and gave me a gentle, encouraging smile.

For the first time for about 6 weeks, I felt - funnily enough - frightened. All this time, I have been fighting for the right to normalcy, to be able to continue working the same hours, to be perceived as though I am ok. But today, something as small as a smile brought my human frailty sharply to mind.

Everyone has been telling me to take it easy. Most people say that they have friends and relatives who have gone through what I am going through, and I cannot be expected to be 'normal'. "No-one expects much of you right now," someone told me. I thought it was funny at the time because I expected much of myself.

Now, after the smile incident, I wonder if I have missed the plot. Perhaps I should be less optimistic, less confident that I can beat the cancer. That I will get through chemo, radiotherapy and the final surgery and then be 'normal'. Perhaps I won't make it, that I won't survive the next 5 years. Even as the thought occurs I force it away. I won't think negative thoughts, I refuse to.

Such introspection brings sadness. Every experience, no matter how fleeting, becomes something to be clung to...again. And always, lurking in the background, there they are - Fear and Panic. I refuse to acknowledge them. Cancer is serious. It is not something to be got through, but lived with. Oh God.

This is why I cling to activity, I guees. So that I don't have to think. I know sooner or later I will have to confront Fear and Panic, but that time is not now.

I am told by long-term cancer survivors that the fear and panic never go away competely. That they become constant companions. For now though, I will continue to cultivate my art - that of sticking my head firmly into terra firma, and pretending that Fear and Panic don't exist.

And they don't - for how can something exist if I refuse to acknowledge them? There - poof! - they are gone.

Thursday, August 24, 2006

I am beginning to think that hair is highly overated, and a sexist tool to keep women 'in their place'.

Today is my second day of being completely bald - what a feeling! My scalp is cool all the time. When I had hair, I would have to go through the routine of wash and condition every day, hair mask once a week, blow drying and rubbing serum through every day. I was obsessed by shampoos and had a whole range of different shampoos and conditioners in the bathroom - the theory being that if you use a different shampoo every day, your hair does not accumulate deposits from any single shampoo and therefore looks thicker, shinier etc.

Now, though, it is 'wash and go'. Being bald cuts 40 minutes from my daily routine. In fact, I would prefer to be able to go bald permanently. But I fear it would be too much for most men to take. The women seem supportive when I mention this - but the men! God forbid that they have to deal with a bald woman. (Bald men are ok, though).

Why should this be? Someone told me that without hair, we would too much like men and they wouldn't be able to pigeon-hole us - this would make the poor dears run scared because we would become more like men than women and therefore their world would come crashing down around their ears.

This is one more choice women will have to fight for. We are brought up with the idea that our hair is our crowning glory. Romantic bodice rippers tell us that the heroines have gorgeous tresses, long flowing hair all the way down their waists. Shampoo ads perpeatuate this by showing women with impossibly long, computer-doctored hair - and a man casting admiring glances in her general direction. And we women, myself in my pre-cancer days included, are suckered into rushing out and buying every single one of these shampoos!

But we should be able to choose NOT to have hair if we want - and be accepted in spite of it. Not discriminated against.

The movement to use real women with real curves in advertising has paved the way - but baldness really is the final hurdle towards true female emancipation and equality of the sexes. I wonder how far away we are from this? Can we actually imagine a futureworld, where men and women are so equal (I might have seen this in a sci-fi flick) where we are ALL bald?

The battle begins - as it always does - within the female psyche. Are we ready to let go of our hair?

As for me, I am having lunch with a hapless male, so I guess I will have to put on my wig!!!

Tuesday, August 22, 2006

Today I celebrate as a day of liberation. I decided to take ownership of my life back and faced up to some facts about having cancer:

a) Being bald is just...fantastic. Apart from seeing whether or not you have stick-out ears (mine are not!), you actually look better without hair. When it is hanging limply off your scalp in patches, looking like a horror movie doll with glued on hair, you do look ghastly. But now, with a shiny bald pate, I actually look healthy, full of life! Go figure...So, yay, no hair! Scalp feels minty cool and I cannot wait to sweat it out in a jog.

b) I told my personal trainer ie, my brother, to take a hike. I was being pushed to jog, being told I had to be fit. Good grief. Face it - I have cancer, I am going through chemotherapy. Who gets fighting fit during chemo? I refuse to jog to the point where I have to come home to nap. I want to be energised at the end of the session, not worn out. It's all in your mind, he tells me. You're not panting so you cannot be tired. Crap. I am tired. Full stop.

c) Since I am housebound due to low immunity - massive sessions of online retail therapy! I put everything I want into the shopping cart, but most of the sites I like (Barney's, Nordstrom, Macey's, Bloomingdales etc) do not ship to Asia. Yay! High end therapy without the financial pinch. Fantastic!

d)I let go of the job issues. I may not have a job at the end of the year, but all I can do is speak my piece and do a good job where I am asked. If that does not help, well, worrying about it now won't help, anyway. Onward, ho!

e) I told all my colleagues across the region and in HQ that I have cancer. The concerned emails, offers of support overwhelmed and touched me. But more than that, I was able to release this burden of the 'cancer' secret.

Ultimately, I have decided to put myself out there, cancer and all. Naked scalp and all. And I put myself first. Concerned relatives pushing me eat all manner of stuff, brothers making me jog, bosses giving me strife because of their own inadequacies...enough is enough. Right now, I am first and last in my universe. Everybody else can just deal. 'Nuff said.

Sunday, August 20, 2006

'Be still and know that I am God'.

I think this is one of the most beautiful lines in the Bible. I don't quite know where it is from, but I have had occasion in the past - many, many times in fact - to take great comfort from this single, simple, yet rich-in-meaning sentence.

Essentially, what it means is - to me - be at peace, for I, God, am in control. I will look after you, for you are Mine. I will do great things for you, go to any lengths for you, perform miracles for you. There is no need to worry or fret. Such is the length and breadth of almighty God, and His love for us.

This line is also on a plaque in the meditation room in my church. It was put up during a week when this sentence kept appearing - in Gospel readings, when I read the bible, in Christian publications I received in the mail, even in email messages. I felt it was something at that time that God particularly wanted to tell me.

Today, my cousin, who was diagnosed with cancer about a month after me, sent me an email with this sentence in it - and it reminded me of the times I had heard this line before. And as before, I take great comfort from it. (Thanks, Jackie!)

So(for now, at least), I will be still. I will seek this stillness where God is. And as I lay me down to sleep, I am, for now...OK.

Saturday, August 19, 2006

Well, they warned me that there would be days like today - bad days, depressing days. More hair came off in the shower today - the hair fall is less even now. Today, I look like a dog with mange. In a word, I look ghastly.

I have never been particularly concious of my looks, since they were never really what I considered one of my 'core assets'! But I do look bad now. I look ill. And no matter how I tell myself that I am ok, that I'm doing ok, I guess I really am not.

Today is a day that I am re-learning lessons I thought I had learnt about faith, about trusting in God, and allowing him to work in my life. I am having to acknowledge that my faith is not as strong as it could be. I have to forcibly remind myself, as I did when I had to learn my mathematical formulas in school, that God has proven himself trustworthy before when I had need of Him and that He will prove Himself again. Somehow, though, today, it all rings rather hollow, like so much blah blah blah. There is no soul-echo.

Concerns about job stability, financial security, ability to keep paying for treatment because all the insurance companies are looking to squirel out of their obligations...there seems to be no light at the end of the tunnel.

Again, I have to acknowledge that this is a day-by-day journey - one day at a time, one step at a time, one decision at a time. The rest we must leave up to God - hard for a type A control freak like me. Taking the quiet way forward is so un-me!

But I will have to anchor my faith somehow. I will. I will...somehow, I tell myself. But even as I do so, I know that this is not the way forward.

Friday, August 18, 2006

Two days ago, someone whose balanced judgement I respect, said something to me that turned on a lightblulb: "Simone, you have to deal with people as they are, not as you think they ought to be."

This is what, I suppose, is at the crux of maturity (a highly mis-used word, in my opinion!) - an elusive goal which I am challenged every day to reach. It is certainly easier if one acknowledges feet clay and other disaapointment and shortcomings, thereby dealing with - and it would be ok if everyone was equally laissez-faire. But the truth of the matter is that almost everyone - myself included - demands better. Why can't you be more patient/mature/understanding/charitable...?

Other people are constantly judging us, fairly and unfairly - yet are so unwilling to see the splinter in their own eye. I suppose it is a coping mechanism, otherwise the shock of really looking at ourselves might be too much to bear for some of us.

Well, here's what I think - we can either sit back and accept the world as it is, and shrug our shoulders in resignation, or we can demand a better world. How do we progress if we take an accepting attitude? How can things get better unless people see that gaps between what is and what might be, and look to address the gap? What hope is there for humanity if we don't look at the possibilities and try to get there? Surely this is what is at the heart of the human spirit - the heart of hope?

It is easier to sit back and say 'Ah well...". It is easier to sidestep our responsibilities as thinking, envisioning human beings, and focus on our own workaday issues. But if we all do that, what hope is there for the future of the human identity? Surely, when we were created, we were created to be more than just a surviving species?

As human beings, as people, we have a destiny to fulfill, and each of us must seek to make a difference in our own ways, in all our encounters. It is not easy - in fact, it is usually bloody hard especially when no-one wants to hear you and brands you 'difficult' or 'demanding'. But it is our right, our inheritance, that we must be continually driven to do so. We owe it to all those who have striven before us, to ourselves and people striving today, and most of all, to our children and the generations who will bear the legacy of everything we do (and do not do) today.

Thursday, August 17, 2006

What does a woman do when she feels uncertain - or even if things are going swimmingly? Retail therapy is the answer! After years of being totally focused on work and going into the office (I don't have much of a casual wardrobe), I am finally being irresponsible. I have a casual, boho-chic wardrobe, am dressing half my age and am experimenting with all sorts of headwear and hair accessories - all items I will never be able to wear into an office and still give the impression of being a responsible adult.

Why does cancer have to be a drag? Why can we not have some fun, wherever we find ourselves in life? Life does not not have to be hard strife, even though many times, as we each go through our daily challenges, we lose sight of this. We focus on getting through it. Why should we not enjoy 'it', have fun with 'it', tease 'it', challenge 'it', laugh in 'it's' face, kick 'it' in the butt?

Come on, it's all transitory anyway. Here today and gone tomorrow. Celebrate the moment - and live a little!

Wednesday, August 16, 2006

I think I must be going through the 'anger' phase of accepting that I have cancer. First of all, I am really pissed off at the person who has given me his or her sore throat.

This is my pet peeve about Singaporeans. They have all been to school, learnt about germs and viral transmission - and yet, there they are in their hundreds (or thousands if it is Saturday on Orchard Road, or the Ministry of Sound) hacking, coughing, sniffing copiously. But will they go home and recover before they infect everyone else? Hell, no. I've got a germ, let me share it with everyone. Can't they be kiasu and less sharing about their germs, like everything else? What about the person coughing away and still saying,'No, I'm ok, I'm not ill.' Good grief.

Why cannot we be a more gracious society, like the Japanese? If they are ill, they venture out all masked up. That's consideration for you. Is there some sort of national pride in spreading as many germs as possible? Being a highly germified nation? The most germs per capita? What are our other favourite Singapore benchmarks? Did we not learn anything from SARS?

The second peeve today is the phrase; 'Oh, he's a not a bad person, just weak'. Are we supposed to excuse bad behaviour, back stabbing, victimising, because some is 'not a bad person', just weak? Oh, never mind, he is well intentioned. What do they say about the road to Hell? How often has anyone cut you that kind of slack? There is right and wrong, and all of us know where the line is. It's what we are taught in our cribs, it is adult society that teaches the fine art of excuse-making and dissembling.

Let's stop making excuses for bad behaviour, for wrongdoings by spinning this into the 'oh, he's just weak...' line. Too much spin doctoring from the Bush administration is rubbing off on to us. Bomb the hell out of an entire region and call it justice, rather than hegemony and vigilantism - wild west, cowboy-like, misguided do-gooding that has skilfully (evily?) spin-doctored violence and mayhem into holier-than-thou virtue. (While the world - disappointingly - stands on the sidelines).

Let's respect ourselves and our moral judgement a little more. Let's call a spade a spade - a creep (weak, nice or otherwise) is a creep, as is a backstabber, a lousy manager, a poor leader, a lazy subordinate, a poor team-player, a liar, a fair-weather friend, a coward, a selfish pig, etc. No more excuses and white-washing!

By the same token, let's celebrate (loudly) the positive in our lives - the loving mother, the solid friends, the mentors, the guides, the supports. Give thanks for all that is good and positive, generous, caring.

Life's too short for excuses, bleatings, and anything that is second rate. Do not put up with it any more.
Remember the days of the TV detective series, Kojak? When 'bald was beautiful'? Well, I am losing my hair now and seeing my own scalp for the first time. The last time I had a naked scalp, circa about a hundred years ago when I was toothless and in diapers, I cannot remember. I have photos, and I think the baldness sat better back then.

In fact, I am amused by my baldness. My latest party trick is to reach into my remaining mop and casually pull out a hunk of hair saying: 'Look, no roots!". But I know it makes people feel uncomfortable, and even as they laugh, they look away. Why don't you try putting on a scarf, they say. What about your wig? When are you going to start using it? My brother goes on about bald patches. As if vanity were an issue for me right now.

Quite frankly, this is not my problem. It is theirs. I am still me, underneath the skin. I still grin the same way - the teeth look a little bigger than usual because I have lost some weight, that's all. But I am still me, baldness, sarkiness, sour disposition, loud opinions, and all.

Why disguise it? Everyone I meet these days knows I have cancer, knows what I am going through. I am not embarassed by it - in fact, this whole journey is becoming rather fascinating. I am getting to know myself, my body and different people in many different ways. It is a learning journey.

So, baldness is not my problem, it is everyone else's. It makes people uncomfortable. And that's normal. But here is what I want to say about it - we are still the same people, even if we do have cancer. We are still the same friends, lovers, siblings, daugthers, sons, mothers etc, you have always known - all right, maybe a little changed because of our journey, but still, we are US.

Look beyond the bald skin, please, and see us again, as we once were, still are, and will continue to be - and deal with us, relate to us, as the people we are today and indeed, have always been.

Tuesday, August 15, 2006

How do you convince other people that a diagnosis of cancer, or a course of chemotherapy, does not automatically mean that you have one foot in the grave? That you are still capable of being a thinking, contributing human being, with lots of life in you yet, and with lots yet to give? Here, I refer to people who take your responsibility for your life away from you by saying, 'Well, given your situation, I did not want to burden you...'.

What crap. I resent being pigeon-holed, and limited because I have cancer. I resent not being allowed to contribute, not being able to convince people that I am taking the chemo exceptionally well, just because...'well, its chemo you know...'. What do I have to do - dance on the bar counter stark naked?

The life-connection is what pulls cancer-sufferers through, and turns them into cancer survivors. 'Positive discimination' (a stupid contradiction in terms if I ever heard one) is simply an excuse to discount you, and is a mediocre form of charity for the uneducated, uninformed, and uncompassionate,people with a moral superiority complex. When you are well, you would not accept such treatment. Why should someone with a cancer diagnosis, looking to make whatever time they have left as meaningful as possible, do so?

We are NOT dead yet, and for many of us, it will be a long, long time before we are! We have the right to live fully, and demand of the people around us to allow us to live fully. Do not accept paltry excuses for caring - demand the kind you need. This is for everyone, not just cancer sufferers.

Cancer survivors - stand up and be counted!
It is funny how, even when having cancer consumes you,life keeps rearing its ugly head. I have had a very stressful couple of workdays (I need to work to pay the bills). My manager, because I am working from home, is sticking the knife into my back. Just what I need. And since the job is in Shanghai and I am resident in Singapore, I am far too easy a target.

While things were going well, I thought I could get through treatment, then go back to Life. Now, I am beginning to think - perhaps I need to reassess my life and job. Do I want something so lacking in common decency that your manager tries to stick you when you are diagnosed with Stage 3 cancer? What kind of bastards are they?

I cannot get past the anger - and actually, what should have been a really good day (taking Day 2 of the second round of chemo very well) has turned out to be a rather waste of a day dealing with the office crap. And I do not have the time to waste on this. Every day should be as close to great as I can get it.

What is the point of this post - well, merely to vent, to ruminate and to stay open to any suggestions from the universe - apart from 'nuke the bastards', of course.

Sunday, August 06, 2006

Today is my first post for about a week. The reason is that I have been too busy to make a post. I have caught up with work, launched two new marketing programs, caught up with friends, explored the far reaches of Singapore for organic vegetables and innovated new macrobiotic recipes.

In other words, I am catching up with my life, after about 10 days feeling 'not quite right, but not quite ill'. I have had a very good week am feeling fantastic, engergised and connected to life.

Chemotherapy prepares you for the rest of your life as a cancer survivor. Before you begin, you feel frightened. There's no other word for it. One is simply terrified. Will I be able to keep my food down or will I spend days face down in toilet bowl? Will I lose weight, become cadaverous, and will all my hair fall out in one fell swoop, turning me into a fright I cannot recognise as myself?

Once the oncologist puts the drug in you, you live from hour to hour, waiting for the side effects to manifest, starting with the initial coldness in the stomach area, the taste of blood in your mouth, the feeling of 'not being quite 100%'.

Then begins the journey of cancer survivors. Life is lived from day to day - in thankfulness from day to day, for each experience that is not 'not feeling quite right'.

Thanks for each day I don't throw up, each day I can eat a full meal, each day I can go about normal things. Thanks for every day that I feel stronger, that I wake up smiling, feeling good to be alive. Thanks for the friends who take time to stay in touch, for the date pudding and ice cream that I am not actually supposed to eat now that I am macrobiotic - yum! And for the warm wind and sunshine on my face as I sit in the taxi, relaxed from retail therapy, windows down so I don't catch any germs being harboured in an airconditioned cab. (To think there was a time I would rather have cut my right arm off than go without airconditioning!)

Each day is different, unexpected. No longer taken for granted. Every experience is savoured, turned over at the end of the day like a slowly melting toffee in the mouth, but remembered with pleasure once gone.

Cancer rewires you. I have just begun the journey. I hope, God willing, it will be a very, very long one.