Why is Death So Taboo?

Why don’t people think about or talk about their own death? When I talk about it, people say I’m being morbid or pessimistic because I’ve had cancer. Not so. I used to think about my death even before my cancer diagnosis. I don’t dwell on it or get consumed by it, but I think it’s something worth thinking about. After all, we’re all going to die someday. Don’t people have any curiosity about what it feels like to die?

I wish I could talk about it with friends or family without being accused of pessimism or getting the scolding, “Stop it! You’re being too negative! You’re going to live to a ripe old age!” I’m getting a little annoyed by this attitude. I may indeed live to a ripe old age, but then again, I may not. But my chances are not 50/50. They’re weighed against me such that it’s completely reasonable for me to think and be curious about the most likely scenario. I think this falls under one of those topics that cancer patients can only talk to other cancer patients about. People outside of Cancer World can’t really imagine this part of the cancer experience.

But what exactly are people so afraid of? Mostly, I imagine, what will happen after they die, if they believe in an afterlife. I’m not sure there’s an afterlife; in fact, I sincerely hope there is NOT, so that’s not what really worries me. Maybe people are afraid of what will happen to their world after they’re gone – what will happen to their children and other family members, maybe friends. I’m not really afraid of that because I’ll be gone so I won’t know one way or the other. Plus, I’m not so arrogant as to believe that my family and friends can’t go on without me once I’m gone. That would be silly.

I think what I’m really afraid of is HOW I die. I don’t want to die in so much pain that I can’t even think properly. I don’t want family and friends, especially my children, to see me lying in a hospital bed, all skin and bones, expending every bit of energy I have left to force a smile so as not to upset everyone. I don’t want to spend the last days of my life pretending to be okay for the convenience and comfort of others. Call me selfish. I think a person on the verge of dying should be allowed to feel what they feel without worrying about upsetting others.

And I don’t want people to feel pity, guilt, or obligation. One thing that’s disturbing me about going to my friend Kate’s funeral is the issue of cost. It’s going to cost a lot of money for me to fly down to Australia for the second time in a month, and some people I’ve talked to think it’s a bit excessive of me to spend the money. After all, Kate’s dead and I don’t know her family at all so what does it matter whether I’m there or not? I know all this is true, but I have my own reasons for going to the funeral. When I saw Kate last month, she said the only thing she worried about was her brother and sister. Kate was never married and had no children. I want Kate’s brother and sister to see a lot of her friends at the funeral so they can see how much their sister was loved and respected.

I would hate for any of my family or friends to feel obligated to come see me die or be buried. I imagine people thinking about the cost of flying out, having to use up vacation days at work to make the trip, maybe missing a family holiday or a daughter’s dance recital, or a son’s soccer tournament to come out to my funeral. People will have this unintentional but niggling feeling that their lives have been inconvenienced or disrupted by my death. I think if my funeral were to be held in an exotic place like Bali and it was time for a family vacation anyway, then people would come to my funeral. I’d certainly be more likely to attend a funeral if it were coupled with a nice holiday, I confess.

I don’t think this is something to be critical about. I think it’s normal that people would rather not go to funerals. The living don’t have time for the dead. I don’t think I’d like to have a funeral. I’d like to be cremated and my ashes disposed of in any way that makes my family feel happy. I don’t care if my ashes are flushed down a toilet – I’ll be gone and the ashes are just ashes, not me.

I know funerals are not for the dead person but for the people left behind. But maybe the people left behind should find some other way to reconcile themselves with their loss. Maybe funerals in general are a bad idea.

What’s a Good Way to Die?

I’m going to a funeral in a few days – the first time for me. It’s for my friend, Kate, whom I worked with when we were both foreign correspondents in Seoul over 10 years ago. She was 64 and died of bowel cancer. I went to see her last month in Sydney when I heard she had cancer and had weeks to live. I hadn’t seen her in three years. The first thing I noticed was that she had HUGE eyes. I mentioned this to someone who said it was like Holocaust victims in documentaries – they all have huge eyes because the rest of their bodies have shrunk so much.

Kate was a tough, feisty, hard-working, hard-drinking, chain-smoking journalist like those classic war correspondents portrayed in the movies. To see her so frail and weak was a bit of a shock to me. I was in Sydney for a week but only got to see her once for 30 minutes because she was too tired or in too much pain to see visitors the rest of the time. She said she was on very strong painkillers and had extra doses that she could take if the pain got too bad. About a week after I left her, she was readmitted to the hospital because the pain got too bad to manage at home. Three days before her death, a friend went to see her in the hospital and she told him to “fuck off”. She was in so much pain that she couldn’t even see anyone and didn’t want anyone to see her in that state.

Kate has covered major wars from the trenches, was kidnapped by the North Vietnamese during the Vietnam War, and dragged by the hair and almost scalped in Afghanistan. If anyone could endure pain, she could. The pain must’ve been very bad. Maybe it’s like being slowly tortured to death like prisoners-of-war in the movies. The kind of pain that would make veteran soldiers spill state secrets. The kind that completely blinds you to anything else. The kind that no one ever comes back from.

And last month, my neighbor’s father died of pancreatic cancer just three months after diagnosis. She told me her father was in sheer agony for the last days of his life. Nothing like the peaceful, calm way they die in the movies, holding a loved one’s hand, saying something poetic, then gently closing the eyes. Apparently, he was writhing in pain and suffered a slow, tortured, agonizing death. It seems like the entire family’s been completely traumatized by the experience of seeing him like that.

I don’t ever want to get to the point of feeling pain above everything else. But how do I do this then? If I get to the point where nothing more can be done for me medically and the doctors can’t even manage the pain enough to let me die quietly, can I just kill myself? But then people would criticize me for being a coward. And I don’t want my kids to think their mother was a coward. On the other hand, do I just suffer through days or weeks of sheer agony – the physical pain as well as the pain of watching everyone around me witness such harrowing scenes of torture and agony? What’s a good way to do this?

The best answer to how I want to die is: suddenly. Unfortunately, cancer doesn’t afford that luxury. Maybe I’ll get lucky and get hit by a meteorite before cancer gets a second chance.

To Prepare Or Not To Prepare

I haven't written in my Blog for a while. Now that I'm no longer being treated for cancer, there isn't much to update. Of course, there are the usual thoughts that occupy a person after cancer treatment, such as fear of recurrence, but I don't think anybody wants to know about that sort of thing.

Our upstairs neighbor's father was diagnosed with cancer three months ago and appears to be nearing the end. I have two other friends who aren't doing so well. These are constant reminders that one of these days, I could be going to "pain management specialists" instead of doctors because nothing more can be done for me. I try not to think about that and mostly, I don't.

But I suppose I need to be realistic and prepare for that at some point -- get the kids' scrapbooks updated, write to them in their journals, make a video of me talking to them, etc. I keep thinking about doing that, but I'm so busy with mundane things like paying bills and organizing play dates.

I can see why some people want to know how much time they have left so they can plan accordingly. But if I were to start taping messages to my kids, my friends and family would say I was being pessimistic and criticize me for having a negative attitude. On the other hand, if I keep carrying on like I have a normal life span ahead of me and I have a recurrence and go quickly downhill, I’ll panic about getting things ready for the kids and most likely not have the energy to do much.

So, is it better to know and plan for your death or live in blissful ignorance and just be knocked out of the game without warning?

Am I Done Yet?

I wonder if cancer patients every get to a point when they completely forget they ever had cancer. When it’s so far in the past that it seems like another life and they’re done with that life forever. I wonder if I’m nearing that point.

Of course, not really, because I’m still battling our insurance company about my cancer bills. I still have a post-chemo rug on my head and scars on my chest. And, sad to say, I now have about a dozen new friends who are fellow cancer patients/survivors. I see them fairly regularly, and of course, we talk about what we have in common: cancer.

I wonder if I’ll wake up one day and decide I never want to see another cancer patient again; never talk about cancer again; never have anything more to do with cancer. That is, go back to pre-cancer life and pretend nothing’s happened.

When people live through horrific accidents, near-death experiences, loss of someone they love, any traumatic event, can they ever wake up one day and say, “Okay, I’m done with that part of my life now.”

Is there such a thing as post-traumatic stress syndrome for cancer patients?

New Year, New Approach, New Wardrobe

I’ve adopted a new attitude about cancer and dying. Actually, not a new attitude, but a new approach.

I’ve been pretty open, sometimes even flippant in talking about cancer and dying. I believe that things take on unnecessary gravitas when we speak in whispers or don’t speak about them at all. I went around telling everyone about my cancer and weaving cancer into my conversations if there was any relevance at all. I would casually mention that I might not be around when talking about events ten, twenty years down the line.

But the other day, Tony told me this was a bad attitude. I disagree. My attitude was and is the same. Statistically, my prognosis isn’t good but I know I’m going to beat the statistics. I think I’ll be around for at least another ten years, maybe more, maybe even outlast Tony. At the same time, I’m not living in la-la land. I know that cancer is likely to come back someday and kill me. I don’t want to live in fear of it, so I treat cancer with complete disrespect. I will laugh it off and casually throw out comments about “when I’m dead and gone...”. But I see now that this isn’t necessarily a good approach for people around me.

So I’ve decided to change my approach to cancer. I won’t talk about it so much any more. Frankly, I’m a bit bored with talking about cancer, and I’m sure my friends and family are too. I won’t make flippant remarks about dying. I won’t talk about what will happen at the end. And I won’t put off buying things for myself thinking that I might not be around to use them for very long.

Armed with this new approach and a credit card, I went out this weekend and bought a new bag and a new pair of shoes. I’m going to buy new clothes because my closet’s full of clothes I’ve had for ten years. If I’m going to be around for another ten or twenty years, I might as well look and feel good.

Are People Afraid of Me?

I realized something today. People are afraid of people with cancer. And even cancer patients are afraid of other people with worse stages of cancer than they have.

I recently visited a friend in the hospital after her surgery for breast cancer. Let’s call her “Sally”. She and I have another mutual acquaintance from the waiting room of the oncologist we all go to. This mutual acquaintance has metastatic breast cancer -- it’s her second time around and it’s spread to her lungs and a few other organs. This, after having been given the all-clear eight years ago when she was first diagnosed. Despite her dreary prognosis, she’s bright and cheerful and rarely complains about the grueling treatment she’s going through.

I mentioned to Sally that I hadn’t heard from our mutual friend for a while and perhaps I should call her so we could all get together soon. Sally’s response left me speechless. She told me she was afraid of this other lady. We didn’t go into details because although I didn’t share this fear, I immediately knew what she meant.

I understand why non-cancer people are afraid of cancer patients. They don’t know what to say. They feel pity. It’s depressing to be around a sick, dying person. They’re faced with their own mortality.

For cancer patients, the mortality issue hits hardest when looking at other patients in worse condition. It’s hard to watch someone in the last stages of cancer without thinking that someday, you’ll be there too. And if the patient is visibly dying, like the bed-ridden, emaciated, bald cancer patients you see in the movies, it can be scary.

I was never that stereotyped patient when I was going through chemo. I was lucky enough to escape all the side effects (except the baldness). None of my friends stayed away or kept their distance. If anything, my friendships became stronger and more meaningful.

But what if I WERE one of those visibly dying patients, cloistered in bed in a dark room? Would anyone come to visit me then? And even if they did, would they only do it because they felt too guilty not to?

I don’t want to force anyone to face that dilemma -- to spend time with me out of obligation and pity. But really, why else would anyone choose to spend time with a sick, dying, bed-ridden person? I doubt I’ll be cracking jokes or laughing at that stage. Then I wouldn’t be me anymore.

I guess that’s the really frightening thing. Watching someone you care about becoming less and less the person you know and love.

End of a Bad Year

This year started with me getting progressively worse news about my cancer (It’s just the breast and lymph nodes under the arms. Nope! It’s in the neck! Oh! It’s also on the skin! No time for surgery! Get on chemo straight away!). And now the year is ending with a mysterious swelling that none of my doctors can identify for certain. Seems like two fitting bookends to a bad year.

2006 was the year of cancer. The year of living cancerously.

Here are some things I’ve learned after a year of having cancer:

1) Medicine is more art than science; more guesswork than certainty.

2) We DO have some control over cancer. We can’t prevent cancer, but we can greatly reduce our risk with daily decisions about diet, exercise, and exposure to harmful chemicals. (There is science behind this!)

3) Facing death has not made me sweat the small stuff any less. In fact, I’m micro-worrying even more. Why? I have more control over whether my kids eat enough vegetables than I have over whether my cancer comes back.

4) It’s easy to be brave when you have no choice.

5) It’s hard to be brave all the time.

6) Cancer patients should be allowed, nay, ENCOURAGED to throw a tantrum once in a while. Especially when those tantrums are aimed at building contractors and bad drivers on the road, rather than doctors and family.

7) People are capable of surprising acts of generosity, kindness, and understanding when dealing with cancer patients. People are also capable of surprising acts of insensitivity, callousness, and apathy when dealing with cancer patients.

8) Cancer has not been the life-altering experience I expected it to be. Is this a good thing or a bad thing?

9) I’m more afraid of how I’ll act in the face of death than I am of death itself.

10) I am going to die someday. (I USED to be immortal, really...)