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.

Friday, November 23, 2007

Well, folks. That dreaded day has arrived. The cancer is back - 2 small lesions in the lower lobe of the left lung. Detected during a routine PET scan. The overall 5-year survival rate, even with treatment, says my oncologist, is 30%. I was devastated.

For the first time since I was first diagnosed, I had decided to take a leap of faith and act out what I had always claimed, that God had healed me. So I had a small celebration dinner planned with some good friends at our favourite ci'zar place. For the first time since I was diagnosed 18 months ago, I had decided not to panic before the test, not to lie there in the dark while waiting to be scanned in a quivering mess, reciting Hail Marys, begging God for mercy.

I have spent the last two days blubbing and desperately searching for evidence that the scans might be wrong. The oncologists say there is a 10% chance. But that is simply a standard, fop, percentage. It's not real. The truth is that there are other indicators which would corroborate the suspicion of an erroneous reading. In this case, there was none. So, there I was hoping for a false positive. Hope gone, I'm afraid. The lesions are almost certainly malignant.

I am pissed off. There was no reason for the cancer to return - the diet, the exercise, the heavy dose of chemo, the ghastly Brand's Essence of Chicken, the constant juicing. My poor mother chopping and cooking all those special macrobiotic meals during my treatment, her hands drying out from the constant careful washing of vegetables. The cancer did not even have the good manners to wait years to come back - nope, it came back far too early, announcing itself as a 'bad' cancer. You can say that again. Early arriving guests are never welcome - I am always too busy doing some last minute panicking and cooking. Yet they still come.

I said to someone today that I thought God was a trickster, a prankster. Ask for a long life and he over-delivers - here comes forever, Simone! I am now afraid to pray. I am afraid of what I will get.

What next? I am seeing doctors for opinions on different treatment options. Each has different approaches. I keep hoping one might have a magic bullet. A little like how I used to see many different fortune tellers, hoping to find one that would tell me what I wanted to hear - wealth and happiness all round. Never asked about my health.

I know I have to make a decision fast. No point delaying things. I ask everyone reading this to say a prayer for me. For courage. For strength. And most of all, for a positive mental attitude. For the conviction that I will continue to live here on Earth, live this temporal life, and live it many, many long years to come, in perfect health. Pray that I will beat the odds. Please God.

Friday, May 18, 2007

In spite of my shopoholic, MaxMara-holic self, I have now a what I have always wanted but had never seemed to be able to manage - a quality capsule wardrobe.

I am still losing weight, and when I realised this a month ago after my bracelet flew off my wrist during a tai chi session, I panicked. Was it the cancer coming back? I really had no reason to lose the weight, having just returned from an eating binge in Penang. I had also just moved back into my apartment, and with no pots or pans, and sheer fatigue, I was eating out quite a bit. In other words, I should have been putting on weight.

A year ago, my weight loss would have prompted a celebration. After all, I have been on one diet or another since I was 13. Now, weight loss prompts panic. I rushed to the nearest doctor's clinic to weigh myself. The nurse had no idea what to make of the near hysterical person who rushed in, asked to use the weighing machine, stood on it, looked at the reading and rushed out. She did not have time to even get a word out. (Ok, she did bleat something but I couln't be bothered to respond). Weight on the scale had inched up!

The recent PET scan made me feel better - no sign of cancer. So, the weight loss must be good. To be on the safe side, I have bought myself a digital weighing scale - the better to detect every single fluctuation.

Now, I can celebrate the weight loss and my new wardrobe. I used to buy nothing but black - because I spent most of my money on work clothes and black is the colour du jour in the corporate world AND because it made me look thinner. Now, I am able to buy loads of colour and indeed have made a vow never to buy black again! I am buying funky jackets, cropped trousers, sequinned tops, and for the first time ever in my life, I own SEVEN pairs of jeans. I bought them simply because I could get into all of them. I remember once, during an offsite meeting, my boss told me to wear jeans because the dress code was casual. I had to buy a men's pair because there was not a single woman's pair in all of Singapore I could get into.

As of last night, I am still paring the wardrobe down. The only things which still fit are the stuff I have bought since January. Ergo - capsule wardrobe with colours, and polka dotted attitude.

My life is becoming pared down too. I work from home, eat most meals at home, and live simply and quietly. It is quite a contrast from rushing around at work, from meeting to meeting, getting on planes, and having to continually manage all sorts of afflicted personalities and their different agendas. I thought I would be bored, feel left out of things, but instead, I feel quite liberated!

I know of course, that I must earn my keep somehow. But I also know it will come. One day at a time - one joyful day at a time...

Friday, May 11, 2007

Apart from my last post, I know this blog has been quiet for some time. But don't get me wrong, life has been whirl of activity since I was retrenched. Here is a quick update:

Outplacement - I have had several meetings with my outplacement consultant who is very ably pushing me to develop collateral to 'sell' myself so that I can get some cash flow going. I am not used to 'selling' myself, having been an employee for so long. Usually, it is sufficient that you have a j0b title and are employed by a certain company. That's all people need to know to place you. Now, I have to think of what I can do, and it is not easy. But I do not have a choice, someone has to pay for all that organic food.

Retrenchment package - I did indeed go back to my company with some requests in terms of what I felt would be a reasonable package, given their decision to retrench me at the worst possible time of my life. They came back with something better than the original for which I am profoundly grateful. It was only when they gave me the news that I realised how tired I was with all the toing and froing, the tension of waiting to hear so that I would know what the rest of my life would look like. I began having dizzy spells a week later, and realised that I had been doing too much, what with the rush to get set up for business because I thought I had to start bringing in the mulah as fast as possible to begin saving for a possible recurrence. After two days of rest, I felt better and am now more cautious about packing in activity back to back. And, thanks to my ex-employer, I am sleeping through the night again.

House move - I moved back t0 my own place about 3 weeks ago, and moved right out again after 3 days so that the place could be repainted and otherwise spruced up. I was living out of boxes, and without a single pot for those three days which made it easier for me too rationalise cheating on the macrobiotic diet. The old flat was a calm cream on pink on white. Very sophisticated and so not me. I think it was wishful thinking on the part of my architect. I have had it repainted a sunny yellow and a lime green. I really hated it when I first saw it but am now quite happy with it. Just goes to show you can get used to anything. It is now quite cheerful, and set to be even more so, when my biggest,most unreasonable extravagance arrives - wildly colorful wallpaper, courtesy of Designers Guild. I wanted some 9 years ago when I first bought the place but was unable to afford it. Not sure I can now, but what the heck. God is good. You only live once. Let's just go for it!

Setting up my business - I am now the sole proprietor of a little business, called PUREcommunications. I wanted to call it no-BS Communications, so sick was I of the corporate soft soap that one has to accept as part of the workaday world. Everyone reassured me I would have a job after chemo. I always said my boss was trying to get rid of me - but everyone said I was imagining it. Well, yesterday I talked to someone in the company, and listening to her rundown of the latest and greatest, I actually found my mind wandering. In the past, every word would have had my full attention. Now, I really cannot be bothered. I wonder why people put up with such nonsense - having to suck up, flatter, cajole. To pretend that your manager is a genius, to swallow all sense of pride and grovel to the most undeserving. How can people live with themselves? Really, life's too short for BS. It's days off our life spans. It's time for pure communication, clean communication, meaningful communication. Let's just cut the bs and move ahead. Yeah.

Catching up with friends - this is one area in which I have really been magnificently blessed. Friends have come out of the woodwork and I am so grateful for these people, people whose help I have done absolutely nothing to deserve. They have been introducing me to their business contacts so that I market my fledgling business. I am not ready, I whinnied to one, I don't think I can do anything apart from the odd writing job. My timidity (hahahaha, but yes, it is true!) was over-ridden. People have had so much more faith in me than I have in myself.

I thought things would be slow. I had envisioned myself getting the odd writing job, that it would take months before I got to real PR. Now, it looks like it might happen alot sooner. Thank God. I am so buzzed now, creating my own brochures, collateral etc. Playing with colour and typeface. It really has the potential of being everything and anything I want it to be. No-one else. Just me.

Pilates, yoga and qigong - yes, trying to vary the exercise routine. Have been very lax about jogging since I moved out on my own. I will redouble my efforts tomorrow. Have also been slack about the diet. Too easy to run down to the food court and get some popiah. I now see how I dislike cooking for myself. All that washing really takes its toll on your hands, and at my age, it is an uphill battle keeping the paws soft and lily white. I don't want to wash anything. I guess I have to remind myself it is a choice between crepey, onion-skin hands and a recurrence. There. That puts things in perspective.

That's about it for now. Have a few more things I am chewing over. But I think I have enough on my plate for now. Watch this space, though. I am living in extraordinary times. You never know what's round the corner!
I had a PET scan done on Wednesday. It is now Friday morning. I know the results were sent to my oncologist's office on Thursday morning. Yet, I have not yet heard back. When I rang the clinic today, the receptionist tells me: Can't you wait till next Tuesday when you see Dr Wong?"

Well, in short, the answer is 'No'. Absolutely not. Why do I have to wait? Why should I wait to hear if a life-threatening disease has returned? I can only think of one reason - that they found something. That's why I have to wait to see the doctor, so she can deliver the bad news face to face.

Ok. Even while writing this post, I received a call saying the scans were clean, except for some spots on the bone which were 'not significant'. I was so relieved I forgot to ask if that was all they found. I guess so.

You know, I understand that if you deal with cancer patients all day long, that you get a little blase about things like their anxieties. But I am my only cancer patient. I am all I have and I am NOT blase. As I said to someone whose mother has just been diagnosed with cancer, vigilance is key. I have always taken my health for granted. Ailments in the past have always been fixable with an antibiotic or two. I am now paying for my lack of vigilance with breast cancer.

Now, every ache, every twinge, has to be monitored. If it does not go away in 10 days, it has to be investigated. I journal every little symptom so I know I am not imagining things or getting hysterical. Yes, vigilance is key - and you cannot rely on your doctors to be vigilant, although you have to trust they will do their best. With cancer, I am reaching new and tiring levels of self-reliance. It is me, myself and I in this battle. That's it. That's all.

Tuesday, April 10, 2007

Today, I was at the adjudication hearing on my insurance claim with Aviva, which had earlier denied my claim for breast cancer. I am prevented by the adjudication agreement to discuss the details of the proceedings, but let me make one point: it's just business.

That's all it is. Whatever you might read in the brochures, see in the advertising, at the end of the day it is just business. Ask yourself - the Shield plans all do not ask for a medical examination before cover is granted. They will take your premiums. It is only when an illness occurs that they conduct extensive medical investigation.

I ask you, is this not a little like closing the barn door after the horse has bolted? What good is all this to the person who has been faithfully forking over their premiums prior to diagnosis? Oh, it is a mass plan, therefore we need to keep costs down, say insurers. But, hang on - surely the objective of insurance is coverage? Or does that merely translate to a false sense of security to the consumer? A removal of their options to seek alternative means of financial support if there is an illness discovered in the pre-insurance check-up? Or are these plans a convenient way for insurers to fleece the unsuspecting Singapore public?

You know, for the price of S$2.3million per year, I believe I, as a citizen, am entitled to more than mere parliamentary rhetoric from my MPs. I would like to see my personal rights actively protected and promoted, not rationalised away. All I can see, and I believe many other people see this too, is that we keep forking out for what we are told is necessary. However, I would like to see some tangible benefit to me, the individual. (Yes, I am throwing a tantrum.)

We could all name any number of schemes ( and I won't talk about that elephant in the corner, by the name of Education System; the pig ERP trying to take off by the window; or that cow, called COE, chewing on the money plant on the table) which are less than successful. Yet, hey, do we throw things out completely to come up with innovative ideas? Go right back to the drawing board? Nope. We just keep taxing the people and maybe one day, that pig will fly, the cow will roll over, and the elephant will blush a nice lobster red.

What about the constant round of retrenchments here in our little island? It is, no matter how much land we reclaim and how many IRs are built, a small market. With the constant round of retrenchments, and the practices I am seeing on the part of people who take our money in the name of supporting us when times are hard (then let us down), it appears the individual Singaporean is pretty much on his own. Sink or swim. Alternatives, niches and untapped markets are few in this fair isle.

I would like to see some rather novel ideas from our best and brightest minds, who are being paid millions, come up with more to help the workers whose taxes pay for their lifestyles and the very comfy leather parliament seat.

Not another self-help scheme to give us new skills. How does that put food on the table while we go on the interview rounds? And it is for sure that we do not all land that job with the very first interview. What happens in the mean time? What about executives who lose their jobs? Re-skilling does not help them. I would like to see some like being exchanged for like - financial support in exchange for their nice fat pay cheques, which, I might add, are handed out in both lean and fat years. A co-funded rainy day chest for each citizen, perhaps.

If we are going to peg our leaders' paychecks to the private sector's, why don't we have a private sector style performance appraisal? Salary bands, for instance? 360 performance reviews for everyone, with the opportunity to be retrenched once the economy is down, or be fired if performance benchmarks are not met? A ranking system? When was the last time our government was rightsized? What about KPIs clearly set with delivery within a certain timeframe? All CEOs have this and answer to their boards. The private sector have fat paychecks because they are subject to the risk of firing and losing their rice bowls if they do not perform. They do not have iron rice bowls。

In Singapore, it is always 'just business'. I believe it is possible for us to have 'just business' with a heart, with integrity, with an eye to a better overall lifestyle for all of us, not merely the have's - the have-jobs, have-healths, the have-safety nets, the have-voices, the have-constituencies.

What does it take to get there? It will take someone at the top encouraging - sincerely- this movement. Gee, now there's an idea. Cross my palm, please!

Tuesday, April 03, 2007

Today, I ran into a junior college chum from way, (way), back and found out that she, her sister-in-law, and another classmate were all cancer survivors. And although it had been three years since her diagnosis, when I looked back after leaving her, I saw that her eyes were red. "I don't think about it," she had kept saying when I tried to ask her about her cancer journey.

Also today, I saw the case worker who was handling my arbitration with the insurance company. She said that cancer is 'not that common'. When I told her that it strikes 30% of Singaporeans, she said that that proved it was not that common.

But taking my own experience, I believe that 1 degree of separation is getting significantly narrow. Perhaps it is my age - once you hit the big 4-0, cancer does tend to make its presence felt. Your risk of contracting the disease increases.

I have never, in my entire life, felt old. In fact, I am trying to get Bryan Adam's song, Eighteen Till I Die, put on my mobile phone as the ring tone. Today, however, I actually felt old. I was walking around a mall, and everyone there (almost) was younger than I. I looked at the trendy young girls, and found myself thinking,"Gee, where did the time go?"

I feel even older when so many people I know have cancer. When someone tells me that cancer is uncommon, it is more than just plain ignorance. It is also the foolishness of youth talking. With my diagnosis, I have crossed the line. I am on the other side of the hill now.

We know that the incidence of cancer is rising, just as we know that more people are being diagnosed at a younger age. Yet cancer is more than a disease of age - it is also a disease of lifestyle and it is reaching its frightening claws out to more and younger people, as Singaporeans become affluent. Every time I read in the papers about a cry for more fine dining restaurants, I think: all that butter and cream - killer food! But with affluence, such indulgent eating will become the norm and, more than likely, the incidence of cancer.

My point is this: cancer survivors are the new marginalised. The outcry for the aged, the unemployed, the physically challenged started some years ago, and is still going on. Singapporeans have a hard time taking a communal view of things - we are a 'me and mine first' type of society. As long as someone whose job brings them in contact with cancer survivors regularly can say 'cancer is not common', we have a problem. And we should not allow this problem to grow.

As long as there is this degree of ignorance in our society, cancer survivors will find themselves marginalised, with rights and needs unrecognised, treated as being 'less than'.

Cancer survivors can help themselves by talking about their needs, their experiences. I understand the feral push to move past the diagnosis, to get on with life. But -if we don't educate society at large about us, and what it means to be a survivor, who will? There is a powerful lot of cancer survivors out there - we have all glimpsed the face of death - and survived. Let's take the strength built on the experiences of the journey, and bring others into our conversation. And in helping ourselves, perhaps we will sensitise our fellows on the responsibility of the majority towards sub-groups - the consideration, the obligation to listen, understand and,ultimately, to treat us as one of them, with the same rights - to a job, to financial provisioning, to acceptance. As normal, fully alive. For that is what we survivors are - and absolutely nothing less.

Wednesday, March 28, 2007

A couple of nights ago, I had my first outing as an official breast cancer survivor. Until then, I had only told people socially that I was a breast cancer survivor. And as far as the newspaper articles were concerned, I hid out when the brouhaha was raging. This was especially easy since apart from immediate family, no-one else I knew seemed to read the Straits Times, or read more than the headlines.

Two days ago, however, I went to the premiere of Pink Paddlers, a movie about the Singapore dragon boat team made up of breast cancer survivors. When I showed up with my 1 cm hair regrowth, and saw women there whom I had seen at various hospital corridors and oncology clinics, I realised that I was one of them, a sisterhood of strangers drawn together by the simple words: you have cancer.

The stories told by the women who were featured in the movie were all too familiar - the sense of shock and denial when first told of the diagnosis, the horror of the mastectomy that followed, the fear throughout treatment, the reactions of family, friends and strangers. While I had always felt that my journey was particularly easy, hearing the recollections of these women also highlighted something that I have never admitted - that there is a nightmarish element to the journey.

When my father was first diagnosed with terminal lung cancer nine years ago, I remember thinking that it was as though death had moved in with us. I could not think of my father, or have a conversation with him, without thinking that each interaction with him, or thought of him, was one of the last I would have. It was countdown time. The long dark shadow had cast its pall over all of us.

During Pink Paddlers, even as the brave women interviewed danced, laughed and furiously paddled through every race, it was as though they were defying death, determinedly living life writ large in the face of death. And at the very end, when the dragon boat teams gathered together after the competition to remember team members and friends who had passed on, the nightmare element of the cancer journey was brought to the fore - that death walks very closely to all cancer survivors. This is a nightmare from which we will never wake up, ever. As one survivor said, even after several years, we still fear the recurrence.

A voice-over at the end of the movie said that at the back of their minds was the thought: I wonder how many of us will be here next year? Death is our constant companion. In a wierd way, this is way we all try to live our lives as fully as possible - because we refuse to give up one iota while we still have life.

I must admit I spent much of the movie blubbing. It was my story on the screen, as it was the story of all breast cancer, and indeed, all cancer survivors. It was a story of struggle, and a daily bolstering of courage. The vivacity and determination of the women interviewed were inspiring, and humbling.

All of them have blazed a trail. The movie, if shown in cinemas, will go a long way to lifting the veil of ignorance and attitude of 'I'd rather not know' around cancer. Kudos to the women who have bared themselves to the general public to raise awareness and consciousness.

Indeed, cancer is not a death sentence. It is a sentence of fullest life.

Tuesday, March 20, 2007

Well, I've been a busy bee over the past several days. In fact, for someone who is jobless, I have been quite chokka with meetings. Enter the next phase of the cancer journey - building a roadmap into the future post treatment.

As with the chemo, when it was one day at a time, I am still trying to feel my way forward into a rather uncertain future. I am keeping all my options open, meeting headhunters who might need someone with my profile, meeting with potential clients for my brand new PR business and meeting with friends.

What is unnerving about all this is the number of times I have had to relive the early days of the cancer journey, the fear and the shakiness, as I have to admit that I am a cancer survivor to people. And sometimes, people want to know more than they have a right, or need, to. Today, when I cancelled my meeting with my outplacement person, saying that I was feeling rather tired, having just had a bout of the flu last week. It was not enough for her. 'So long to get over the flu? Are you all right?" she asked. "Yes, I'm just tired." She continued to press."Are you sure?" I have to admit, I was annoyed. What she want me to say, that it was the cancer again? And if it were, why should I tell her, a total stranger? "I am just tired," I said. "Is that all right with you?" If I were anyone else, she would have accepted the tiredness excuse. But because I am a cancer survivor, I have to have something more serious.

Well, I don't. Take that and chew on it. She said she was just concerned. But even those who are concerned have to learn when to back off. Concern does not entitle you to the details of my life. I have had months of doctors prodding and poking, months with minimal personal privacy. Now, here is the total stranger, whose relationship with me does not merit confidences, expecting to be confided in.

Well, back off, I say! You will only be confided in because I choose to confide, not because you ask questions. I do not appreciate presumption of intimacy just because I have told you that I have cancer.

I know I should not be annoyed because Singaporeans as a whole have less of a concept of personal space than other people - probably because we live in such tight quarters, and partly because the Chinese culture as a whole does not respect personal space as much as other cultures.

But I want now is the right to be normal, to be treated as any other human being - and that includes the right to privacy. The physical facts of cancer are something most cancer survivors spit out pretty automatically - we've been doing it for months. But at some point, we need to move on from the physical elements of the disease to the life after treatment - a new life phase which to most of us is a gift, a blessing. After chemo, and radiation, and surgery, we want to begin living as fully as possible, in a life with parameters of our choosing, not a bug under a microscope.

For the past nine months, I have had contact only with the medical community and family and close friends. To other people who are now entering my circle - I am putting up fences, and a BEWARE sign. No prizes for guessing whose teeth will be gnashing if barriers are breached!